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#172538 - 04/19/10 11:09 AM [Sticky] Diet and Ankylosing Spondylitis
Chris Miller Offline
Web / Design & SAA Multimedia Consultant
Registered Visitor

Registered: 02/27/04
Posts: 3335
Loc: Van Nuys, CA
Diet info from long time member Tacitus follows below...


Edited by Chris Miller (04/20/10 09:25 AM)
_________________________
"...We are going to relentlessly chase perfection, knowing full well we will not catch it, because nothing is perfect. But we are going to relentlessly chase it, because in the process we will catch excellence." ~ Vince Lombardi

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#172571 - 04/19/10 03:19 PM Re: Sticky wanted on Diet [Re: Chris Miller]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hey, Chris:

Would something like the following help?--

This material is an opinion, based upon the research done at Kings College, London, by Professor Alan Ebringer and colleagues and his 20+years clinical experiences at The Middlesex AS Clinic.

In 1983, Professor Ebringer began using a starch-excluding diet, The London AS Diet to help patients reduce symptoms of active AS. His subsequent studies, and vast clinical experience, provided clear evidence that such a diet was key in managing this disease.

Ebringer’s LSD (colloquially "Low Starch Diet") was easy to follow, long-term, and intended to be used in conjunction with conventional medical treatments and drugs, especially sulfasalazine-EN (enteric-coated), one of the best DMARDs then available for treating AS.

The diet focuses principally upon a scientific finding (not yet accepted by the entire scientific community) that the common bowel germ, Klebsiella pneumoniae, causes AS.

When eating a diet particularly rich in refined carbohydrates, the residue that makes it into the colon provides an optimum substrate for bacterial growth, and this germ blooms, increasing their numbers many times. Depending upon the character of the bowel contents, it is statistically more likely that the greater numbers of bacteria will infiltrate through the lesions and potentially increase disease activity.

Another factor in AS is a permeable gut, whether there are obvious lesions or “Crohn’s-like microlesions” as some researchers have observed. The germ has access to our secondary immune system through these lesions.

The mechanism of molecular mimicry accounts for the production of the features of AS, predominantly cellular death specific to those collagens rich in the outer surface protein HLA B27 (or structurally similar): Collagens I, III, IV, and V.


DIET and Ankylosing Spondylitis

The AS diets are essentially three degrees of inconvenience, depending upon an individual’s tolerance for the presence of this germ:

The London AS Diet (LSD) by Professor Alan Ebringer
The IBS Low Starch Diet (NSD; No Starch Diet) by Carol Sinclair
NSD and No Dairy by the Orthodox-strict AS Community

It should be apparent that results of diet are always subjective, unless there is a good gauge with which to monitor disease activity. The method employed by Ebringer et al monitored the antibodies to the bacterium, IgA-Kp (Immunoglobulin A, specific to Klebsiella pneumoniae). It was easy to establish a baseline and measure the hard numbers to see what affect diet or any drug was having on disease activity. Unfortunately, this method was never commercialized, but has been developed as a scientific laboratory standard measurement in almost twenty different countries.

In each of these regimens, the perceived goal is to eliminate the food upon which the germ that causes AS thrives: Starch. This germ can also ferment milk, so lactose, galactose and other milk components are potentially problematic for some individuals.

Well before 1978 Giraud Campbell also began using a starch-excluding diet in all types of arthritis, but especially interesting is some of his patients with wonderful results had “Marie-Strumpell’s” disease.

Campbell did not have the scientific reasoning behind why his diet worked for Marie—Strumpell’s patients, but he promoted his regimen for everyone with arthritis in general, as does Joseph Mercola, who has observed that grains or grain-based diets are particularly arthritogenic.

Also independent from these, Dr. Jean Seignalet had substantial results in his clinical experiences, excluding grains especially for his patients with AS.

And Jackie LeTissier ("Food Combining for Vegetarians") overcame her AS by managing the starch in her diet and perhaps managed to even remain vegetarian by a method of food combining.

There are even more references to starch-reducing diets and AS, Reiter’s Syndrome, and other diseases within this family, but these are the most recent and prominent.

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#172655 - 04/20/10 09:23 AM Re: Sticky wanted on Diet [Re: Tacitus]
Chris Miller Offline
Web / Design & SAA Multimedia Consultant
Registered Visitor

Registered: 02/27/04
Posts: 3335
Loc: Van Nuys, CA
Thanks John, was hoping you would pop in smile

I'll edit the original post and sticky this.
_________________________
"...We are going to relentlessly chase perfection, knowing full well we will not catch it, because nothing is perfect. But we are going to relentlessly chase it, because in the process we will catch excellence." ~ Vince Lombardi

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#174387 - 05/12/10 08:29 PM Re: Sticky wanted on Diet [Re: Tacitus]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
This is my “long, boring AS Story:”

“ In 1971, aged 21 years, I began having sciatic pain. I was diagnosed with Ankylosing Spondylitis (AS) in 1978, about seven years after onset of my symptoms. I was HLA-B27 positive, and had the characteristic SIJ fusion.

Initially, I had very severe sciatica that would come in waves and I complained to my physicians about right side buttock and thigh pains. These would then switch to the opposite side. The sciatica was so intense at times that I could feel it even past my knees, and along the outside of my calves.

Within a couple of years, the sciatic pain spread to the lumbar area and this lumbago was so severe that at times I was unable to get up from a chair normally, even after only sitting for a few minutes. Soon, I was not able to get out of bed, except by first sort of falling out and crawling onto the floor. I had to have a very hot bath in the mornings. I would crawl into the tub to soak for a couple of hours before I was able to move enough to go to work.

Sometime later I contracted pneumonia, and had severe ribcage pains upon coughing. About a year after recovering from this, I developed pleurisy of a strange sort in which I became unable to swallow. Within a week, I was taken to the hospital due to dehydration and for evaluation.

At this time, my AS symptoms relented somewhat and I was able to make the connection that fasting helped to control my symptoms of whatever yet-to-be-named disease I had.

My very core would always become painful, and I was unable to turn my body in any swivel motion, or bend over properly, without flexing my knees. Although I did not work in a physically demanding job, it was still very difficult to keep up to a demanding career in electronics with the continuing education required to remain current, along with the demands of family obligations.

Colleagues wondered why I spent so much time at work. It was not the work that was especially wonderful or even my home life that was terrible although later it became so, but I looked forward to the very act of walking out into the parking lot and getting into my vehicle with extreme trepidation. Such simple tasks were torture.

The doctor prescribed a drug called Butazolidin alka (phenylbutazone), but it did not seem to help me very much, and I could not stick to taking pills at that time, so I did not give it an honest chance.

He never told me that he suspected Marie-Strumpell’s disease, and even if he had it would not have meant very much to me at that time. Soon after taking this drug, I developed asthma, although it may not have been directly related; this is the timeframe.

The first attack was quite severe, the result of standing at the edge of a mustard field with the wind blowing in my direction but the asthma did not recur every allergy season, and would usually skip several years. I also noticed that I could reduce the symptoms by drinking potassium chloride, but I could trigger the asthma by eating either macadamia or Brazil nuts. I was at a party where macadamias were offered, and I had to look around for a banana before eating even one nut as an experiment. That asthma attack was somewhat moderated by the potassium in the banana, but it was still there, waiting to pounce.

Eventually, I joined a health club and spent nearly all of my free time there, soaking up what I used to term “BTUs or British thermal units”—it was the heat that helped very much with my mobility. Alternating hot and cold baths relieved the pains, to some extent. In that environment, I met others with various forms of arthritis and they were usually the last ones to clear out of the sauna every night.

One fellow in particular, seemed to understand what I needed to hear and do, and when. He was a student of the Edgar Cayce materials. We studied together at his home, not too distant from the health club. Through fasting and some workouts, I brought myself to a point where I was able to jog. However after doing a few miles on one especially cold night, I was going to have dinner with my jogging partner and he dropped me in the parking lot because I was rapidly freezing up at the hips, and could only “ambulate” by sort of throwing one leg in front of the other and pivoting forward. The next day at work, a girl told me she had seen me at that restaurant: “You looked plastered!” I had to explain to her that I was not drunk, but had just been jogging and could not walk after that.

About this time, I also met Dr. Max O. Garten, who encouraged me with respect to fasting. I had already been on a 20 day water-only fast which resulted in a level of remission that allowed me to begin running again in earnest. I did several 10K local runs, one even on day five of a seven day fast. I was able to begin playing racquetball regularly, after once previously trying to pivot at the trunk this way, and then doubling over in excruciating pains.

I began water skiing, then snow skiing. I spent more and more time at lifting weights and worked with some power lifters on the machines, but was still unable to fully switch to live weights, since I had lost too much muscle control to the disease by the time I was finally diagnosed.

Initially, after the AS diagnosis, I participated in an NSAID study and spoke to the physician who was coordinating the investigation. It was my own logic that made me suggest that if the pains were decreased, the disease activity or progression should also decrease accordingly. This doctor was much wiser than that, and suggested that although the pain might be reduced, this could be the result of something unrelated to the disease. They wanted the proof, either way. I must have gotten the placebo, because the pills had no effect against my pain or progression of this disease. The fusing process had begun, with sacro-iliac joints already involved. My doctor monitored my ESR, which began to increase and tracked the disease activity, to some extent. At one time there were encouraging results and he asked me the reason. So I told him that I had been fasting and was more careful with what I was eating, which was true. Since I had become a vegetarian and found some minor relief, but more importantly, I had been fasting. He BOOMED “There is NO DIET for arthritis!” and I knew that I would not be visiting him ever again.

There was a girl I was quite fond of, and she married a good friend and we remained very close, as she began having health problems, soon discovering that she had Crohn’s Disease. I spent hours studying this condition and found that this was more likely in persons who smoked, an unfortunate habit that I encouraged her to eliminate. After reading more about Crohn’s, I discovered it mirrored my own disease, except for the terrible bowel strictures. I saw this lovely young girl suffer terrible pains and one indignity after another, finally having the colostomy and perhaps all due to the habit she could not extract herself from. This was an early lesson for me, because I had my own habits, related to AS, that I could not so easily overcome.

Chiropractors know much more about nutrition, supplements, and herbs than most doctors, I suppose that the chiropractors really have to know more about diets, since they cannot prescribe drugs, so rely upon natural things.

I tried almost everything then available: High colonics, chiropractic adjustments, cranial plate alignments, radio-frequency heating, ultrasound, dietary cleansings, coffee and seawater enemas, prayer, Reiki massage, meditation, acupuncture, herbs, craniosacral adjustment, eliminating sugar, eliminating soda pop, every supplement and free-form amino acid, psychics, and aerobics. Nothing was ever nearly as effective as simply going without all foods.

After fasting, I would always feel better, but the pains would creep back and immobilize me once again. Shortly after diagnosis, I had a severe episode or flare-up only hours after eating some fried rice. I found that most fried foods could trigger a flare, but especially fried onion rings. It took me many days of fasting to recover from these flares to relent and enough to get me back to some normality. Tempura, French Fries, falafels, a vegetarian’s perfect food, and papad a fried Indian bread. each of these delicious foods, made me flare-up significantly. After one such meal, I developed extreme shoulder involvement, which was bursitis with adhesive capsulitis and excruciating pains. Just the lightest touch on my shoulder would result in sharp pains, and when I broke off the head of a screw while under great torque, the sudden jarring sent me on a berserk-like pain rampage. It ached for many days on.

I often had waves of deeply aching pains that lasted for many days. I was still going to the chiropractor, and she was a bright and funny German lady, large enough to get movement from my too stiff bones. When I fasted, however, she commented on how much more mobile I had become, wondering why and I informed her it was the fasting. Another of her patients had rheumatoid arthritis, and she suggested fasting to her. The suggestion was received with “Are you trying to KILL me?!!” When I returned for a treatment, the chiropractor related to me in her characteristic Teutonic inflection and cadence: “Zot fot fot vooman, auch! She couldt fast for a MONT—und she shouldt!” I was not aware at the time that there might be an entirely different diet for rheumatoid arthritis.

Despite everything I had tried, my hip bursitis increased to the extent where I was unable to walk. Sometimes after I had tried forcing myself to put weight on my left leg, odd rectangular-shaped blood patches or hematomas appeared on my upper thigh. Although I had been very anti-drug up until that time, AS began affecting my work, so that I relented and finally gave in to the quacks’ poisons. Within three days of taking Clinoril (sulindac), I was once again able to walk, but after two weeks I developed severe stomach pains and passed only blood upon going to the toilet. In an attempt to avoid a trip to the ER or Accident & Emergency sections of the hospital, I took about three handfuls of myrrh resin, and, exhausted as usual, went to bed. Upon finding myself alive and awake, I resolved to avoid that same medication in the future, and began learning about hip replacements; I had visions of myself taking my mineral pick to the joint which has caused me so much pain and grief. One experienced old orthopedic surgeon told me that there were others who might do such a surgery for me, but he would never do this because I was too young and he believed that I could somehow heal my hip because bone is a living tissue. I continued to switch rheumatologists and NSAIDs, but ended up with some extreme gastrointestinal tract damage. I realized that, after extended fasting, I could again often do without the new drug Voltaren (diclofenac), but when used, it metabolized out rapidly whenever I did even moderate workouts.

By this time AS had cost me my family and many other relationships and a long-term one that had lasted 15 years. My regular career, a side business, a portion of my home equity was confiscated by aggressive tax collectors, together with the later equivalent of several millions of dollars.

It has been said that, sacrificing your health to your job, no matter how hard you work and how much you are paid, there is no way to earn enough to buy back your health. The financial losses constituted the least of my regrets and pains, but there was more AS-related terror to come, for soon I developed kidney stones and then iritis and risked losing my eyesight.

Prior to taking NSAIDs, I had never had either kidney stones or iritis. The doctors would suggest that these were just conditions that resulted from advanced AS; they did not then understand the damage caused by NSAID’s.

Studying the Edgar Cayce material, I had found that his biographer, Thomas Sugrue, probably also had AS but they attribute his illness to some reactive arthritis. His symptoms were nearly identical to my own, but I had incorrectly reasoned that between Cayce’s era circa 1920s and ‘30s and fifty years on, medical science would have advanced beyond the frustrating suggestions in the Cayce readings for arthritis. Cayce told Sugrue that, regarding his disease “Diet is EVERYTHING.” And “…eat more vegetables that grow above ground than below, and if eating potatoes, eat the jackets and throw away the pulp!” I also mistakenly thought that “modern” medical science had even progressed beyond Giraud Campbell’s regimen of MEAT, MEAT and more MEAT and NO STARCHES, especially my daily bread. I never wanted to believe these things, so I relied upon my physicians’ advice, instead.

I began doing some consulting work, and one project demanded that I travel to India. While there, I was seen by The Hakim (doctor)—Sayed Hamid founder of Hamdard Corporation and then head of Aligarth University. He was 92 years old then, and came in, speaking only to my hosts, but he took my pulse for many minutes, then wrote out a prescription we filled at the on-site herbal compounding chemist. As we exited The Hakim’s offices, one of my hosts acted hurt, saying to me “John…do you know what this man has said.” I replied in the negative, observing and reminding him that I do not speak Hindi. “URDU!” “He told us that your mother is long dead and you have an older sister and a younger brother!” I curled my brow, but told my host that Hakim Hamid was exactly correct. “WHY have you not ever mentioned your brother to us?” I had to explain that my brother was a paranoid-schizophrenic, and it was too difficult to communicate with him, so I stopped trying. Certainly, I hold him no ill-will for his condition, which I believe is the result of in-womb abuse; my mother smoked and drank during her pregnancy with him in the late 1950s. She was a “registered nurse” (RN), and also had a medicine cabinet full of pills that did her no good at all. She expired only months after her 42rdbirthday. I wonder now whether her early demise could have been as a result of heart-related AS complications in combination with her terrible lifestyle choices, making it further difficult if not impossible to diagnose, with certainty, her condition.

The herbal pressings prescribed by the Hakim did not seem to do much right away, but soon I had other, more severe complications of “Delhi belly” to add to my misery. This severe episode of enterocolitis had me flat in bed for nearly two months. My hosts brought me medicine after consulting with the local chemists, and although I began to get a little better, it was fully two months before I could stand up for very long. The normally, obnoxious noises of New Delhi mornings, on one morning in particular, became the sweetest and most angelic music I could imagine. My ears had cleared, and I heard the bell of one of the recyclers ringing crisp and distinct, and I knew that I was going to survive. I even began feeling great, and went on long walks in the Saket District near Qutub Minar. On one occasion, I was being yelled at by some vendor, or so I thought, but when he came running up to me, he asked “Don’t you recognize me?!” YES, it was the owner of the best Indian restaurant in the San Francisco Bay Area—“Swagat” in Milpitas. Patronizing his establishment often, I certainly brought them a lot of business, since my company was also located in that same city. Out of a billion people, he recognized me, mostly due to the fact that I had a severe hunchback or kyphosis, thanks to AS. I also had zero articulation or rotation of my head, so cannot turn around to scan who is there.

Later, I moved to Simla and had a constant supply of food consisting of of pooris, a puffed Indian bread which comes with curries and the occasional dosa or pancake, but what really did me in was my birthday dinner of mayonnaise sandwiches with dill pickles. I got myself into a major flare-up or relapse , and could not understand why until much later, in retrospect, after learning the cause and best treatment for AS. I initiated a week long fast, to the chagrin of the cook assigned to me. At nights I had been hearing what I though was a woman in distress, but one night while fasting I was called out of my rooms with shouts of “SHER!” and I witnessed a snow leopard, bounding away after trying to peel off the tin shed roof to get to the pet dog kept by my hosts. A graceful, beautiful creature turned its head to gawk at me, without breaking stride.

By the time I returned to the US, the internet had become a more solid and reliable tool, as I had expected, and new search engines replaced the old code-heavy crawlers. One of the first things I typed was “ankylosing spondylitis,” and I found a support group founded by a patient with severe disease and wheelchair-bound. It was “Brian’s AS-web” and soon Brian was unable to keep up with basic site maintenance, so we contemplated starting another website.

The discussions on the old site were at first commiserations and drug comparisons, but I had mentioned my fasting experiences and the fact that fried foods caused flare-ups or relapses. I had wondered whether others had similar experiences. Most were totally lost, as most patients are to this very day, but one—George McCaffrey, an Englishman—was able to tell me the story about starches. He was gracious enough to send me technical papers written by his rheumatologist in England, Professor Alan Ebringer, and his colleagues. What I found out, through those many pages of difficult jargon, absolutely supported my many observations and the big flashing billion candle power strobe went off over my brain, along with high-decibel audio alarms: We FRY starches. FASTING reduces all gut bacteria.Antibiotics kill E. coli that cause Delhi belly, but also the K. pneumoniae that cause AS. The final connection: AS is CAUSED by a bowel germ acting across a membrane, the gut epithelium, which is too permeable and NSAIDs make this membrane even more porous, sometimes even causing bleeding and occasionally even death. The suddenly obvious explanation as to why my AS symptoms increased, and I had become hunched-over and fused within five years of starting these drugs, is that they damaged my gut enough to allow more bacteria to cross through the gut barrier, and trigger my too-familiar autoimmune reactions. This germ is a survivor that blooms exponentially in the presence of starches and the more of this bacterium, the more will make it across.

The problem was that, as a vegetarian, STARCHES were my main source of food; they were MY addiction. I tried to remain a vegetarian, but that only lasted about a year before I was too close to getting diabetes to keep my energy levels up. I met George during this transition, and although his ESR had been over 100 (Normal range 1-20) in the same year as my own, he had almost no kyphosis, yet I was very hunched over. The difference was that he had been on Ebringer’s “London AS Diet” for the previous ten years, while I had been eating starches and taking NSAIDs during that time. I recognized how important Ebringer’s papers were, so tried to some extent to reduce them to layperson’s terminology. My first attempt was “AS Dietary Primer,” but people were not flocking to the diet in droves, although one of the members from Spain translated it into Spanish, so I began hearing from fellow patients in Spain and Mexico. And the site freetranslation dot com has been wonderful and very accurate--enough to help many people.

There was much dissention on the website—people did not welcome the news that they would have to change so much about their lifestyle; there HAD to be an easier way! “PLEASE don’t tell me I have to give up food—it’s the only joy I have left in life!” It was difficult, and we had all-out battles that got rather personal.

Simple starch-exclusion did not work very well for me at first, only just well enough to let me know that I was on the right track, so after a couple of months I began taking antibiotics. First it was a week before I could again walk without pains, but it took yet another six months cycling through antibiotics and the strictest diet before my costochondritis totally relented. During the next year and more, I kept improving slowly, and I studied which foods to eat and which to avoid. “Let thy food be thy medicine—and medicine be thy food,” as Hippocrates is credited with saying. I worked up my own antibiotic protocol (AP) for AS, after consulting with many microbiologists and scientists at several universities I had access to through my consulting businesses, and had already met many students and faculty members, especially in the data-intense medical fields. Copies of the technical papers authored by Ebringer, et al were given to key individuals, and soon I had enough new supporting data to reinforce what I already knew worked, and by then many people had great results with dietary restriction of starches but I observed a funny thing: Every single scientist working in academia, when confronted with the Ebringer information, agreed with the conclusion about the cause of AS. However, almost every doctor, and especially every rheumatologist, is totally dismissive, if not outright derisive of diet and none invested any time to even try to understand the AS mechanism which is adequately explained by Ebringer and coworkers. There was a long battle ahead, but we obtained some financial support, and I was able to correspond with many people, all over the world, and they had fantastic results.

George not only helped to fund the KickAS.org website, but also several seminars, bringing both Professor Ebringer and Carol Sinclair out from England to teach those of us who are interested. Carol does not yet have fused sacro-iliac joints because although she has AS and her father was severely hunched over, her primary symptom was “Irritable Bowel Syndrome” (IBS) and she, discovered, independent from Ebringer, her own “very low starch” diet. It is the wheel being discovered over and over again: At least six independent researchers and patients have published about the starch connection with AS, and many others have published about grains and other foods that cause or exacerbate inflammation.

The founder of KickAS, Pete, was able to go starch-free for a few months, then low-starch for perhaps a year, and, as we both believe, since he had never taken any NSAIDs, except for the odd aspirin for headaches, having watched his father die from these drugs used to treat AS, healed his intestinal tract enough to backslide into a near-normal diet with no consequences of AS. This is the opposite of what happens to many of us who become more sensitive to smaller amounts of starch at first, and must even eliminate dairy foods.

Almost feeling TOO good, I broke my back while hanging a front door, so required Harrington rods, to be inserted into my lumbar spine. Later, I fell down the stairs at my house and was unable to get my chin off of my chest, always looking as far forward as the tips of my shoes. I consulted a neurosurgeon and he showed my pre-op X-rays to his colleagues who all thought they were medical curiosities, since I was obviously dead; I had a 93 degree bend in my spine!

I was suggesting to him that I thought my bones were in pretty good shape, since I had been on the starch-excluding regimen for many years. After my 20 hour surgery, a record for that hospital, he complained that “…drilling into your spine was like drilling into wet drywall.” I was in a halo for a couple of months after my C7 cervical vertebra was totally removed and C6 shaved at an angle so that I could look to the front once again. Much bone paste was squirted into my spine to rebuild it, but I required mechanical brackets on each of the other cervical vertebrae. Then I noticed the lower back pains once again; perhaps I re-broke my back during the tumble down the stairs.

AS is a runaway freight train, difficult to stop and impossible to predict exactly when and where it will stop, even when diet and the correct drugs can be employed.

Today, I can eat some limited starches but AS is not finished with me, for if I eat too much starch or bad food combinations, I will get the familiar pains of temporo-mandibular joints (TMJ) or my iritis will reemerge and then I take antibiotics and fast or become much more strict with the diet.

Dieting, over the previous nine years, is certainly not a placebo. When I am hit with unexpected sources of starch, often in commercial salad dressings that I have not tested with iodine, but sometimes in supplements, I begin getting AS symptoms again. I am resigned to the fact that the drugs have damaged me to the extent that I might never be able to eat a normal diet again. Staying symptom-free is well worth this small sacrifice: I eat to live, instead of live to eat.

Before the strict diet and antibiotics, I averaged at least three kidney stones and between one and two severe episodes of iritis annually. I had constant severe ribcage pains, terrible heel spurs, hip bursitis, TMJ, and even shin splints. There were days I was disappointed that I awakened, and when a close friend died I told another friend in common that I wished it had been me, instead.

Since then, I have not had a single kidney stone, my asthma is totally gone, and I have had only one episode of iritis, when I ‘experimented’ with “natural” antibiotics in 9 years, and one episode of knee edema at the same time. No costochondritis, no plantar fasciitis, no periostitis, two minor episodes of TMJ and one of bursitis when antibiotics I began taking were not active, but the situation was rapidly corrected by taking known good agents, samples of which were retained for just such an eventuality.

I have remarried, and my new wife demands that I remain healthy, so I have her constant support in eating correctly. The only pains I now have are from existing damage, although I know that AS is not done with me, and had I not become informed and acted upon Ebringer’s work, AS could have claimed my heart and my dignity. (I have read that Cauda Equina Syndrome is especially nasty). Annie, my wife, is from The Philippines, and we built a home there and remain actively engaged in helping some of those less fortunate people in the area of San Fernando, La Union, who now have trouble meeting even with their basic necessities of life. I certainly saw too much of this while I was in India. Also I maintain an active correspondence around the world with other people who also have AS and are interested in treating this disease using diet or better drug choices. I regret very much that doctors are so dismissive of the power of diet to control AS progression, which has been proven even before Ebringer and coworkers, published their compelling data. It is terrible to find out that rheumatologists are even today just as clueless about AS as they were so many years ago when they offered me the damaging drugs and terrible diet ‘advice.’ I have found out that Ebringer’s work is appearing in newer textbooks, so perhaps future generations of physicians will adjust their thinking, since I am certain Max Planck’s axiom will hold: “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is more familiar with it.”

In view of the fact that diet, and specifically starch, has been linked with AS over the past seventy-five years by at least six separate and totally independent observers, even to the point of publication, I have my own modified adage: “Those who decide to remain ignorant about basic statistics are condemned to become one.”

Beyond any other regret I have in my life, I most sincerely regret ever taking my first NSAID! These drugs allowed me to continue eating starches, only reducing the pains while my bone damage, and especially intestinal damage, progressed unchecked and mostly unnoticed. At least before NSAIDs, when I needed to fast, the mechanism causing the AS was arrested, if only temporarily.”
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#174420 - 05/13/10 09:20 AM Re: Sticky wanted on Diet [Re: Tacitus]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Originally Posted By: Tacitus

There are even more references to starch-reducing diets and AS, Reiter’s Syndrome, and other diseases within this family, but these are the most recent and prominent.


Can you give the references to the scientific journals that these results (especially clinical trials of the diets) are published in, so people can read the articles themselves? Thanks.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#175196 - 05/23/10 10:06 AM Re: Sticky wanted on Diet [Re: ]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI

Hi, Stuart:

Quote:
do you reckon the low starch diet would curb the damage to my spine in the long run?


I absolutely believe that diet can prevent the spinal damage; I have met at least two people with AS who avoided severe skeletal changes: Carol Sinclair and George McCaffery (George introduced Carol to Professor Ebringer, and she was subsequently diagnosed by Ebringer with "Pre-AS" because she has no SIJ deterioration).

For my own case and advanced disease, diet alone was not very effective, but it took strict diet in combination with antibiotics to eliminate typical AS symptoms. I regret that I could not avoid more skeletal damage and I'm stuck with osteoporosis after so many years of mis-treatment.

Most drugs offer a false economy, and while I was taking the NSAID Voltaren, I read and re-read the literature inside the boxes and the numbers changed radically from one month to the next and I charted out the implications. Ok, start with a six week trial and 11% of subjects experience severe gastrointestinal complications, then 18 weeks and 25% and so on learning more with larger sample sizes. It was my conclusion that, eventually, almost every person taking these drugs would experience "severe gastrointestinal complications."

At that time, I did not know that AS was caused by the bowel germ, but in damaging my gut with NSAIDs, I knew that my AS greatly accelerated--only five years after starting NSAIDs my neck locked up and I had kyphosis. Regret also that I was a vegetarian, as in my story, exacerbating the already bad effects of the NSAIDs.

I do encourage You to try and eliminate as many starches from Your diet as possible, and You can perhaps monitor this, if Your ESR is related to disease activity (in over 40% of ASers this is not the case), since this would be a solid--non-subjective--measure of the value of these dietary changes. You should not need any drugs, but if You decide that something is required, sulfasalazine (enteric-coated; Azulfidine-EN) is a very useful DMARD.

My opinion of NSAIDs versus the biologic drugs is that NSAIDs are really much more dangerous--yes the anti-tnf-a drugs do result in some complications, but these are many times more rare than NSAID problems. If something like Enbrel can work as an adjunct with diet, it can be a very successful treatment. I know a lady who has been on Enbrel for over ten years with great results because she decreases her dosage around times when she is more strict with diet, and she has not developed any resistance to Enbrel. These are very clever drugs that offer great results for some people. However, they do not treat the cause of AS as do antibiotics and diet.

Have a HEALTHY and fun winter down there,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#175198 - 05/23/10 10:35 AM Re: Sticky wanted on Diet [Re: ]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Originally Posted By: rivercanoeist
I refuse to take a pill until absolutely necessary,


Stuart, with a spondylitis diagnosis, you have ongoing inflammation. Even if your symptoms aren't terrible, almost everyone with knowledge of this disease would agree that it is necessary to take medication to control the inflammation and the damage it will cause if it continues unchecked. There is no evidence published in peer-reviewed journals that supports a diet-alone approach to reducing inflammation.

The statements here about the low starch diet are opinions, not proven facts, although people who state them claim them as facts. They cannot be backed up by rigorous research. That said, the diet probably won't hurt you. Good luck with your journey.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#175484 - 05/25/10 07:19 PM Re: Sticky wanted on Diet [Re: ]
winelover Offline
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Registered: 12/29/08
Posts: 2183
Loc: Perth, Western Australia
Originally Posted By: rivercanoeist
.......I have always been tremendously active, swimming most days around 1-2kms, paddling competitively in river canoe races- I have stopped all exercise besides walking and swimming. I am 25, able to stay off any kind of pills for months without any pain unless I run or lift something heavy......


the activity/exercise will help keep you flexible

it's not unusual for the disease to stay away, maybe for weeks or months, then come back - that is a flare

DMARD - Disease Modifying Anti Rheumatic Drug (e.g. methotrexate)

have fun with the soccer, we've been getting bombarded with it on TV for days already

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#175499 - 05/25/10 10:00 PM Re: Sticky wanted on Diet [Re: ]
Tacitus Online
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Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hi, Stuart:

ESR is also called "sed(imentation) rate" and it is considered a key measure of inflammation. CRP might be a better test, but since You have AS Your physician should order BOTH tests, at least at first. And best if the test is done while disease is active, if possible, as there can be wide fluctuations in the numbers.

winelover answered about DMARD drugs; these can be important, as an adjunct to diet, but I counsel always to avoid NSAIDs (Non-Steroidal Anti-Inflammatory Drugs); very bad for anyone with AS, long-term.

HEALTH,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#175500 - 05/25/10 10:57 PM Re: Sticky wanted on Diet [Re: Tacitus]
winelover Offline
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Registered: 12/29/08
Posts: 2183
Loc: Perth, Western Australia
I think this article will be of interest

Continuous NSAID use beneficial in ankylosing spondylitis

Jun 2, 2005
"We conclude that a strategy of continuous use of NSAIDs decreases the radiographic progression in patients with AS without substantially increasing toxicity. While awaiting confirmation of these results, we carefully recommend that if patients need treatment with NSAIDs to reduce the signs and symptoms of AS, they should take NSAIDs continuously instead of as needed based on symptoms."

http://www.rxpgnews.com/ankylosingspondy...1607_1607.shtml

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#175586 - 05/26/10 06:21 PM Re: Sticky wanted on Diet [Re: winelover]
Tacitus Online
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Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Ah, Yes--

This article rears its ugly head again. I did an analysis concerned about their basic lack of standards--like a control group!

Here is MY OPINION (for what it is worth): NSAIDs

Regards,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#175644 - 05/27/10 07:59 AM Re: Sticky wanted on Diet [Re: Tacitus]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Where is the study on diet, with a control group?
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#175660 - 05/27/10 09:21 AM Re: Sticky wanted on Diet [Re: JenInCincy]
Tacitus Online
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Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI


WE are (I WAS) the control group.
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#175688 - 05/27/10 01:35 PM Re: Sticky wanted on Diet [Re: Tacitus]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
You can't be in both the control group and the treatment group, John. The truth is there ARE no studies with matched subjects in control and treatment groups.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#175737 - 05/27/10 10:54 PM Re: Sticky wanted on Diet [Re: JenInCincy]
Tacitus Online
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Posts: 2860
Loc: Reno/San Fernando LU PI
The truth is that Ebringer had over 600 patients. He wanted all to be on his London AS Diet, but he knew only a few followed it very well. He did studies, but the baseline controls were the patients at his Middlesex AS Clinic who did not follow diet.

Over 20 years all he saw from steroids, MTX, and NSAIDs was severe deterioration and lives devastated by AS, but his preferred combination therapy using diet plus sulfasalazine prevented much suffering and disabilities. He regretted that 30% or more did not tolerate sulfa drugs and so many were still inattentive of diet, so these were his controls.

You want 9 months doing London AS Diet in about 40 individuals and only two have increasing ESR (and he later found out that one of these had a potato every night with dinner). Now Ebringer has how many controls? HUNDREDS. Their ESRs increase with fish-and-chips dinners, pasties, bread puddings, etc etc. But ESR decreases in group following his diet. And in his clinical practice he has almost no drug complications in this group and they do better by every measure--even subjective Bath criteria.

Ebringer had the experience--much more than any other scientist, and he can afford to tell the truth about AS. And I cannot afford to hear more B.S. from the commercial medical establishment; they already damaged me beyond repair!

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#176076 - 06/01/10 04:02 PM Re: Sticky wanted on Diet [Re: ]
Banana Offline
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Loc: New York
Stuart, stick with your doctors advise. The diet isn't healthy for many people and can cause extreme weight loss.

NSAIDs are the only treatment plan that completely stops fusing. The only medication.

Anna
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#176530 - 06/07/10 10:43 PM Re: Sticky wanted on Diet [Re: Banana]
north Offline
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Loc: N Z
I have heard that doxycycline brings down the inflammation and sticking of the cartilage. That rings true with the news of another member who said that his AS went away whilst he was taking doxy for malaria when he was staying in Singapore, but the AS returned afterwards. There is another record of it reducing the spine-sticking in someone else. [sorry I do not have a ref. just now]
Doxy has been suggested in another place as a helpful therapy for cartilage [heart] for its anti- ? and ? properties. [darn that memory!!] Theres going to be a trial I think. ...perhaps someone else can fill in here....
I have never taken meds. for AS - the diet has been sufficient. My spine stuck for a short time in a couple of places but I was able to free it up.
The diet does not cause extreme weight-loss as there are plenty of other carbohydrates available. I think the difficulties only relate to ones lifestyle - if you are used to eating highly manufactured foods instead of basic vegetables, fruits or proteins separately, then it is hard [if not impossible] to separate out the starch.
Factories even add starch to bacon theses days!!!!!!


_________________________
North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place

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#186897 - 10/09/10 07:04 PM Re: Sticky wanted on Diet [Re: winelover]
Twynducky2 Offline
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Registered: 10/09/10
Posts: 193
Loc: Alabama, USA
Wow...that is some life story. Thanks for sharing. My story is not so involved with the failures of the medical world. I am sorry you had to experience all of that, John.

I was almost 18 when I had my first flare. I didn't know what it was at the time, of course. My mom had to help me out of bed that morning and every morning after that for several months. I had severe lower back pain that ran down my legs. It caused weakness in my legs and I would just fall down the stairs without advanced notice.

Mom took me to the military doctor who treated me for muscle spasms, as did the next two doctors. I was put on ibuprofen. 500mg, 1000mg, 1500mg three times a day for several months. No relief came. Then I was referred to an orthopedic specialist. There were XRays, leg length studies, scoliosis screening, reflex testing...and finally a diagnosis...it was all in my head. The doctor actually said that. He left me on the ibuprofen and told my mom that he was recommending that I be seen by a psychiatrist. I never went back to the military doctors. My mom did finally convince them to refer me to a rheumatologist from a blood test that showed positive for an arthritis factor. Unfortunately, by the time that happened I was nearing my 24th birthday. By the time the appointment came around I was 24 and was no longer eligible for insurance coverage under my dad. So, that chance slipped away...I still had no diagnosis.

Until I was 27, I just learned to live with the pain. Once I left home, if I couldn't get out of bed, I called into work, sick. When I was 27 my uncle was diagnosed with AS and he told me that I should be tested. I tested HLA-B27 positive. That bought me a referral to a rheumatologist. I got a partial diagnosis...no xray confirmation, but because of the consistant signs and symptoms the doctor began treatment. She didn't set up another appointment and she told me to follow up with my regular doctor.

I had three months of sulfasalazine, but my regular doctor wouldn't refill it. He said I should go back to the specialist. And so it went. I had some awesome relief with Vioxx until they yanked it off the market. Nothing before or since has worked the way Vioxx did...

Started using a chiropractor after an injury to my knee and shoulder while I was working a car accident as a paramedic. I got more relief from him than everything else combined (except Vioxx). It was the first time in almost 8 years that I had an extended time free of pain. It didn't last, but it was nice while it lasted.

I had six pain free months last year and early this year. Then I had a flare that involved my ribcage...that was a first. I had an injury a couple of months later and the pain has not subsided since then. Over the years I have had involvement in my neck, back, ribcage, shoulders, hips, knees, wrists and hands, heels...I recently learned about the jaw connection...didn't know TMJ could be part of it, but that was one of my earliest problems. It started when I was 19. My family doc recently began treating me for some GI trouble...he thinks its because of all the NSAIDS over the years. Last year he finally ruled out everything else and diagnosed me with asthma. I have had signs and symptoms of asthma since I was about 14. With treatment for asthma and severe allergies I had my first almost normal summer in, well....maybe ever. But, then that's another story.

I have good days and I have bad days. I get depressed sometimes, especially when I have been hurting for a while without relief. But each day when I get up, whether in pain or not, I thank God for another day to live and another day to walk and throw the ball for my little dog, Boo. He doesn't even care if I throw it far or not, as long as he can go and get it. smile

I wish this wasn't my life, but it is. So, I will live it to its fullest for as long as God allows me to be here...pain or no pain.

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#187778 - 10/20/10 05:37 PM Re: Sticky wanted on Diet [Re: winelover]
north Offline
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Registered: 01/25/06
Posts: 1176
Loc: N Z
Stop Press! Eureka!!

I would like to hear if Tacitus [John] has any relief with a change to Vitamin B6 [Pyridoxine]

I have discovered that vitamin B6 is bringing down my sensitivity to starch, and subsequently the progression of the AS. ...Early days yet [GSD typeV disrupts the pyridoxal genetic site]

I also had a deficiency of carnitine.
I discovered that the initial large dose of B6 on its own brought a shredding of the inner lips surface and a prickling of the intestine. That I assumed was a lack of other B vitamins [B2? B3?] and the beginning of bowel problems [IBD? chrons? leaky gut syndrome?]
There are many types of Mcardles variations that are genetic glitches, probably causing at their extreme, some types of AS. [my theory] These are seriously under-diagnosed conditions.

Whats your theory John?
_________________________
North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place

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#188110 - 10/26/10 09:49 AM Re: Sticky wanted on Diet [Re: north]
Tacitus Online
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Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hey, North:

During the previous 11 years solid remission, I have very aggressively taken supplements, especially the Linus Pauling patented mix: Lysine, vitC, vitE, and niacin/niacinamide.

And I have eaten "gut-friendly food" like yoghurt, okra, lychee fruit, sauerkraut, etc.

I have NO DOUBT:
1) VitD, especially from sunlight, has considerable gut-healing capacity
2) Supplements, in general, are very helpful but not the answer
3) AS is related to starch consumption but also the status of the intestinal tract; whatever compromises this can trigger flare episodes and whatever heals this can help eliminate symptoms.
4) I have developed considerable starch tolerance, but it took at least four years of strict diet and
5) Total abstinence from NSAIDs is required again for good gut health.

I do not know about B2/B3 beyond the fact they are somehow related to carbohydrate metabolism and also promote tissue healing and in this they utilize amino acids, so they are co-factors.

The B complex are a class of vitamins that are each very similar one to another and perhaps it is instructive, relative to niacin in particular, that the habit of smoking is extremely inimical to NIACIN--that is even a few drags on those cancer-sticks destroy all of the active niacin in circulation.

Couple this information with the observation that Crohn's Disease is 4-500% more frequent in the population of smokers (and because AS and CD are, IMHO, caused by the same thing, this has implications for AS; stated another way it would be foolish to continue such a preoccupation with a diagnosis of AS and I will expand this to ReA, Behcet's, UnDiffSpond, and others in our five arbitrary Seronegative Psoriatic Spondylarthropies).

I don't know about McCardles, sorry--but there are easily over 200 sequelae of AS and these observations can also have multiple names.

We have a stock market with perhaps over 3500 corporations listed, but that number is dwarfed by the actual number of funds (groups of stocks), so You see the permutations can be in the billions--same with names of diseases we can rack up with AS, so why not call every symptom one disease and two symptoms together call that another disease and these plus a third, well maybe that starts to look like yet another disease.

Well, I like Hippocrates' idea better. When I had AS, it was "John's AS" not fibromyalgia looking like adhesive capsulitis with occasional deQuervain's and TMJ, iritis, and renal calculi...I could go on and on but suffice it to say--

"MY NAME IS AS AND WE ARE MANY"

HEALTH,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#189206 - 11/10/10 07:17 PM Re: Sticky wanted on Diet [Re: Tacitus]
north Offline
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Posts: 1176
Loc: N Z
John, you said -"I don't know about McArdles, sorry--but there are easily over 200 sequelae of AS and these observations can also have multiple names."

I confess....I had to look up the word 'sequelae'! However, I think that AS is the result of the other diseases - as an end stag of them. I think AS will become obsolite as a name simply because noone will develope that damage long enough to be able to identify it,
as the identification is reliant on a positive MRI of the hip.
I am wondering if the lack of the enzymes reliant on those vitamins are the starting point [certain Genes]
This is the kind of research that researchers will be involved in with AS.
http://jnnp.bmj.com/content/81/2/231.abstract
Quote-"Methods Nineteen consecutive LSM patients collected during 1995–2007 in our

Neuromuscular Laboratory who were dramatically responsive to riboflavin and presented

with proximal muscle weakness, exercise intolerance and elevated serum CK but without

episodic encephalopathy were subjected to pathological, biochemical and molecular

analysis."

It might not be exactly this glitch but something similar I am suggesting things to do with NAD or Pyodoxal [Genetic] sites.

I suspect McArdles is a cause - not a result of AS.
Research needed.
_________________________
North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place

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#190887 - 12/02/10 12:56 AM Re: Sticky wanted on Diet FINDING A CURE? [Re: Tacitus]
nightofstars Offline
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Registered: 03/07/09
Posts: 23
Michael Cranman claims to have cured his own ankylosing spondylitis, by diet, at this website, and I was wondering if anyone has any experience trying the things he has published? He wants $79 for the book and an audio mp3 book.

Here's the website:

http://ankylosingspondylitisdiet.com/
_________________________
UNIVERSAL DIVINE POWER: PLEASE FIND US A CURE.

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#190888 - 12/02/10 01:06 AM Re: Sticky wanted on Diet [Re: Twynducky2]
nightofstars Offline
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Posts: 23
This story makes me so sad you tell, because it is mine exactly, all of it. I was told to get counseling for 'anxiety.' For about 10 years I suffered until I became totally paralyzed working seafood lines in Bristol Bay, Alaska. Then the HLA-B27 was tested positive. Wrists, facial bones, ribs front and back, mid-to-lower spine, tailbone, sacroiliac joints, all of it hurts like those blazing red heater coils in those expensive olden day plug-in heaters and I end up in the emergency room paralyzed unable to hold myself up or walk. It's disgusting. It makes me think it is over for me and I don't have very long to live. It has caused damage in the body, xrays show significant damage from mid-spine to tailbone and sacroiliitis in my sacroiliac joints.

I am going to try some hints at some pain triggers that are in the book, "Alkalize or Die" and get on a diet that stops acidity (celery, lots of it, has an alkalizing effect on the body), NO CAFFEINE, I can flare within 2-3 days of drinking one 2 shot white coffee per day for 2-3 days, and it gets ugly in the spine then. And, there is a new thing I found that has given some hope and energy I get at www.afforable-essiac-tea.com, called Essiac Tea from a Chippawa man that has passed but it is still made available. That with an alkaline diet may help you. I have trouble being consistent but it is taking away my ability to walk for good so I am looking for strength to give just about everything up. I can't walk in a couple days of eating raw broccoli, raw almonds, horsetail, silica, these things are disabling triggers. Please try to remain strong and get consistent onto something so you can see if trials prove useful to your overall life, like I'm going to try to do. Discipline can be so hard when you cook for everyone in the house and they expect what they consider "normal." It isn't normal to you though, it is really bad on our system, damaging.
_________________________
UNIVERSAL DIVINE POWER: PLEASE FIND US A CURE.

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#190889 - 12/02/10 01:10 AM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Tacitus]
nightofstars Offline
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Registered: 03/07/09
Posts: 23
I think some of us need a really thorough education on just what are starchy foods, because in one ankylosing spondylitis book on starches, it says even zucchini squash, something like that, has starch in it, and bananas! That is not just breads, potatoes, pasta, things like that. If anyone knows a really thorough starches education place, please let us know.

Thank you.
_________________________
UNIVERSAL DIVINE POWER: PLEASE FIND US A CURE.

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#191174 - 12/04/10 05:31 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: nightofstars]
Tacitus Online
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Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hello, nightofstars:


The definitive book was written by Carol Sinclair: The New IBS Low-Starch Diet. Although she calls it "Low Starch" it is what I call NSD; No Starch Diet; Ebringer wrote the foreword and was splitting hairs "You cannot remove ALL starches" (lol)Ok well it is as low as one can get while still eating!

She has been on her diet with no ill effects for nearly two decades and although her father was very hunched over from AS, she does not even have fused SIJ (she is B27 positive) yet, thanks to her diet. Regret her book is available only in UK.

Despite severe osteoporosis, I am doing very well and planning another extended trip to Philippines, so take heart; there is hope. Years ago, I was doing Edgar Cayce diets (alkalizing diets) and they did not cure me--but I have Glyco-Thymoline to immediately alkalize myself whenever a cold or flu is coming on and it really works wonders.

HEALTH,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#191331 - 12/06/10 07:12 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Tacitus]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
John, again I have to say - shame on you.

You know you cannot make a statement like:

Quote:
she does not even have fused SIJ (she is B27 positive) yet, thanks to her diet


There is NO way to assign causality between those two variables.

Further, who cares? SIJ fusion has nothing to do with disease severity or prediction of later outcomes.

Furthermore, her father's hunched-over-ness has nothing to do with her own status or prognosis either, diet notwithstanding.

If you stick to FACTS people might possibly consider you TRUSTWORTHY.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#191341 - 12/06/10 09:02 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: JenInCincy]
Tacitus Online
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Posts: 2860
Loc: Reno/San Fernando LU PI
Jen, let me clarify something for You:

These are HER words; not my own. Several people have made this observation not only about her (she was not at the AS Clinic, btw) but about others who were part of Ebringer's patient groups.

She made this statement and I not only happen to believe her--both unashamedly and enthusiastically; my own RESULTS and my own observations support this claim. And here is the FACT: I stand by my support of Ebringer, Campbell, Cayce, Sinclair, LeTissier, Seignalet, and Mercola. If I am in untrustworthy company, I will stick with these who got and still get RESULTS.

I have seen plenty of "scientific" papers written with much more "ambitious" conclusions.

So, I do not temper or modify my statements and if it does not matter (apparently it does not and frankly I do not agree that SIJ damage has nothing to do with disease severity--whether You can find phonied-up pseudo technical papers to prove such a ridiculous claim what is shameful is that YOU would actually believe such nonsense) then it is more hair-splitting anyway--right? Your unique spotlight of truth should be turned around on occasion.

Regards,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#193459 - 01/02/11 05:03 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Tacitus]
north Offline
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Posts: 1176
Loc: N Z
John, I am intrigued with your comment in your life story, about having a mentally ill brother.
I have a relative with a similar problem. There is a strong association with the group of nutrients Manganese, zinc, magnesium, B6, NAC, B2 , carnitine and others I am not sure of. It is a disease of city living - assumed to be environmental [accentuated by nutritional deficiency, and I agree].
Diet plays such a role in our AS and also that illness is dietry [yours and my experience plus someothers]
Particular Fats are a problem for me. They crucify the brain. My memory is bad.
Have you identified with a particular genetic group? Do we have ? in common?
I really want to find my roots.

THE DIET IS THE KEY
_________________________
North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place

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#193540 - 01/03/11 02:36 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: north]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hey, North:

Well, I am nearly certain my brother's condition is related to FAS (Fetal Alcoholic Syndrome) due to our mother's increasing use of whiskey and there must also be something to her smoking (I call them 'monoxide brains') while he was in the womb. There is a link between smoking and Crohn's and I am certain this exacerbated her undiagnosed AS, but absolutely led to her death at age 42 from aortitis and inflammatory cascade causing stroke.

As far as I know, I am only Irish, English, and Scots; a rather too narrow mix, I suppose.

My brother's P-S could be articulated around age 8, but certainly he had an "acute strangeness" since birth.

I suppose there are some things that city dwellers are more prone to. As a child I had terrible allergies and when I went to cousin's farm I nearly died haying a field once!

HEALTH,
John



_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#194650 - 01/13/11 03:52 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Tacitus]
north Offline
Registered Visitor

Registered: 01/25/06
Posts: 1176
Loc: N Z
john - you said" As far as I know, I am only Irish, English, and Scots; a rather too narrow mix, I suppose."

hmmm, mine is English, Scots with the B6 problem stemming from a germanic tribe genetic 'glitch' ;-) The alcoholism makes it difficult to see a connection - a red herring. i think it is in the genes.
I see a lot of these arthritic type diseases in those here of Scots or northern European discent.
I suspect that a lot of it is in the lack of pyridoxine B6] which seems to lay the base for everything else to decline. It is very common.
In my experience it is the lack of B6. Certainly it is true in my case Adding the B6, is changing everything. My sensitivity to starch is declining. I think it is the base cause of AS. It is in a great many enzymes.
If your folks had had adequate B6 and niacinamide [= less appetite for the drink] maybe the outlook might have been very different.
???
Schizophrenia is less common in the countryside. I suspect that the more highly processed foods of the city deny B6, and the manganese and zinc.


Edited by north (01/13/11 03:57 PM)
Edit Reason: more info

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#219835 - 10/19/11 06:09 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: JenInCincy]
Cloclo
Unregistered


Originally Posted By: JenInCincy
John, again I have to say - shame on you.

You know you cannot make a statement like:

Quote:
she does not even have fused SIJ (she is B27 positive) yet, thanks to her diet


There is NO way to assign causality between those two variables.

Further, who cares? SIJ fusion has nothing to do with disease severity or prediction of later outcomes.

Furthermore, her father's hunched-over-ness has nothing to do with her own status or prognosis either, diet notwithstanding.

If you stick to FACTS people might possibly consider you TRUSTWORTHY.


WOW! I hadn't read this until now. I am so turned-off by your attitude, Jen.
Shame on YOU, not John, and the rest of you who think alike!
I am signing off for good from this forum even though there are some great people here.
I just don't want to deal with the others.



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#219846 - 10/19/11 08:27 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: ]
gbash Offline
Registered Visitor

Registered: 05/08/11
Posts: 22
Loc: Oklahoma
Cloclo,

I agree! Some people seem to have control issues and want to jump in on topics for which they have no direct experience. They then want to use "scientific thought" to refute others' personal experiences and observations. I've come across quite a few people on other forums who were so disenchanted with this SAA forum that they quit it. The people who put out such rude and snide posts just need to relax and understand that very few of the users here have scientific or logic training. Let the people speak and butt out! On a good note: there's really just a few such arrogant people on this forum...most are really kind-hearted and willing to look past errors in logic, grammar, and usage.
_________________________
AS symptoms started 1991. Official dx in 2006, with HLA-B27+, SIJ totally fused, bone spurs in back, and extreme rib/hip pain. Other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage. Now getting good results with no-starch diet.

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#220012 - 10/22/11 07:30 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: gbash]
Ubik Offline
Registered Visitor

Registered: 08/06/07
Posts: 13
Loc: Oregon
I just re-read this topic and found myself thinking ...."remember when I had enough money to actually choose my diet".

Seems less relevant in the times we're in now. I do equate proper nutrition with good health, but let's be frank, things in America are not set up to deliver you proper nutrition.
There are conglomerates, corporate lobbies, hell the farm I used to work on used chemicals b/c if we didn't, we wouldn't have gotten a nice subsidy check.
I'm just saying, it's darned hard to really even feed one self reliably well in this day and age. That's not an excuse, that's a reality.
I wish I had the luxury of these diets sometimes. The simple fact is, my budget is not that of a meat eater, and starch is cheap. I know it's probably not doing my condition any favors.
I guess collectively, we all do what we can to get along. I know my disease has left me, financially, feeling really, really vulnerable. I think diet is really totally overlooked by most physicians, yet I usually can't seem to stick to (or afford) any variation from what I've known.
_________________________
HLAb27+,Dx'd 2004, started in 97'.

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#220069 - 10/24/11 11:47 AM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Ubik]
gbash Offline
Registered Visitor

Registered: 05/08/11
Posts: 22
Loc: Oklahoma
Ubik,

You are so right about the lack of nutrition in affordable foods. I rarely eat beef and only occasionally eat chicken. I even more rarely eat out. My pantry is stocked with mostly generic or stored-labeled foods. The following have added to my food budget (based on NSD and able to have dairy products, and reducing sugar):

fresh vegetables (zucchini, kale, carrots, broccoli, celery)
fresh fruit (apples, grapes)
dried fruit (prunes, raisins, cranberries, shredded coconut)
protein (almonds, coconut flour, eggs, chicken, pork sausage,
cheese)
oils/fats (olive oil, vegetable oil, coconut milk)

But, my budget is lowered by the removal of many items (mostly low-nutrition or empty calories anyways):

snacks (chips, pop corn, peanut butter, granola, candy, bananas)
drinks (sodas, fruit juice) I never drank alcohol anyways
purchased foods (pizza, hamburgers, pasta, fried chicken)
desserts (pudding, sweets, cake, pie)
breakfast (cereals, pastries, bagels, cinnamon rolls)

So, all in all, my food budget isn't too much more on NSD, but more time is required for all food preparation. My wife and I bake bread, cookies, and muffins with coconut flour or almond flour (I grind almonds to make flour). I also make my own almond butter. The adjustment took a while, but it's now just an accepted part of our lifestyle.

--Greg
_________________________
AS symptoms started 1991. Official dx in 2006, with HLA-B27+, SIJ totally fused, bone spurs in back, and extreme rib/hip pain. Other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage. Now getting good results with no-starch diet.

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#226960 - 02/08/12 04:55 PM Re: Sticky wanted on Diet [Re: winelover]
Jacquie Offline
Registered Visitor

Registered: 01/16/12
Posts: 24
Loc: Tucson, AZ. USA
How does one start this diet?

A.S. is killing me. Simponi, methotrexate, melexocam, vicodin... Not helping
_________________________
AS dx'd 7 years, Simponi, methotrexate, meloxacam, lidaderm Patch, valtorin cream, Vicodin

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#227102 - 02/10/12 03:14 PM Re: Sticky wanted on Diet [Re: Jacquie]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hello, Jacquie:

The best book to own for anyone with AS is Carol Sinclair's "The New IBS Low-Starch Diet," now available as an e-book via Amazon.

The NSD and Diet Forum at www.kickas.org has recipes and basic quick-start information. There are few resources here at SAA as most members are not very interested in this type of treatment which is only 'alternative' now because it remains outside the experience of most practitioners. However, there are over 150 peer-reviewed and published papers by Ebringer, et al suggesting 'substrate modulation' as an important treatment adjunct, along with more traditional medications.

However, beyond this point, I made the decision to further challenge the Ebringer claims and combined dietary starch restriction along with antibiotics and I had great results within four days--which turns out to be a primary time constant related to the disease mechanism. I have thus and thereby not had active AS for over a decade, but still contend daily with the permanent damage so many years of (mis/no)-treatments left me with.

You can avoid the damage, if You will,
HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#227135 - 02/10/12 07:00 PM Re: Sticky wanted on Diet [Re: Tacitus]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Originally Posted By: Tacitus
There are few resources here at SAA as most members are not very interested in this type of treatment which is only 'alternative' now because it remains outside the experience of most practitioners. However, there are over 150 peer-reviewed and published papers by Ebringer, et al suggesting 'substrate modulation' as an important treatment adjunct, along with more traditional medications.


That is not factual. SAA has little info on this diet because

"To date, none of these claims have been substantiated by rigorously controlled studies." (source: http://www.spondylitis.org/about/diet.aspx)

The published papers are theoretical in nature. They do not report on actual studies of the diet - using a control group. From http://www.spondylitis.org/about/diet_lowstarch.aspx

"In 1996, in a paper supporting his theory, Dr. Ebringer published the chart of one of the patients that he had been following over a period of time. The patient’s sedimentation rate (ESR) showed a clear decline from 1983 to 1995, during which time he had followed the special diet. It is important to note that although ESR is sometimes used as a measure of disease activity in patients with arthritis, it is recognized that ESR levels in AS are not necessarily indicative of how well a patient feels. Dr. Ebringer believes that the lowering of said patient’s ESR level demonstrated the success of the diet.

"Other studies have failed to duplicate the results of Ebringer’s research into how a low starch diet influenced the growth of klebsiella in the gut and have found that the diet has little or no effect on symptoms." [emphasis added]

All that said, I am of a mind that although there's no evidence for it, it is unlikely to hurt anyone (provided caloric intake is adequate.) Jacquie, I hope that if you give the diet a try, it helps you!!
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#227166 - 02/11/12 10:12 AM Re: Sticky wanted on Diet [Re: JenInCincy]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Quote:
"In 1996, in a paper supporting his theory, Dr. Ebringer published the chart of one of the patients that he had been following over a period of time. The patient’s sedimentation rate (ESR) showed a clear decline from 1983 to 1995, during which time he had followed the special diet. It is important to note that although ESR is sometimes used as a measure of disease activity in patients with arthritis, it is recognized that ESR levels in AS are not necessarily indicative of how well a patient feels. Dr. Ebringer believes that the lowering of said patient’s ESR level demonstrated the success of the diet.

"Other studies have failed to duplicate the results of Ebringer’s research into how a low starch diet influenced the growth of klebsiella in the gut and have found that the diet has little or no effect on symptoms." [emphasis added]


[btw-WHAT A SURPRISE!]

Regret this kind of mis-direction and misinformation is typical of the detractors.

The female patient who was followed in the Ebringer study had kept her ESR lower through her dietary choices, but also IgA-Kp was lower.

Ebringer is not the only researcher who believes ESR is related to disease activity--MOST recognize the connection. Very few are as confused as physicians: Elevated ESR is fully indicative, but non-elevated ESR in a DIFFERENT patient does not mean there is no disease activity; around 40% of AS patients do not track--the majority do: "MRS B" does, but she still maintained low ESR as of 2009, due to diet.

1996?

There has been NO INFORMATION after 1996??!!

That's the BEST they can do to try and discredit Ebringer and diet?

Soon enough SAA will have to face the REAL facts about AS--that molecular mimicry is real and has been substantiated in laboratories of over 17 different countries.

And the sooner Ebringer's work is accepted there can be real advances in treatment for AS instead of just hand-me-down RA drugs.

Quote:
"Other studies have failed to duplicate the results of Ebringer’s research into how a low starch diet influenced the growth of klebsiella in the gut and have found that the diet has little or no effect on symptoms." [emphasis added]


This is LAUGHABLE! True, "other studies" have failed to duplicate the results of Ebringer's research...[blah] BECAUSE THERE HAVE BEEN NO "other studies!" What is such misdirection except a LIE?

Apparently ANYONE can get away with saying anything they want, and be believed by the most gullible. THEY produce NO RESULTS, but all they can do is TALK DOWN about researchers who found it first. Let them be consumed with envy when the headstone is put on this disease and the the epitaph has room for one name: Alan Ebringer.

A person can only truly believe by DOING. Until they achieve RESULTS they should not support any therapy. Once they have the results, there might be no other therapies worth doing--yes, I have RESULTS and there are no other therapies I could be sold on and I support only what has worked for me and HUNDREDS of others: I have their additional success stories, and will make these public soon.

Keeping AS a mystery might be good business for some, but it is a terrible disservice to the patients, who suffer and die even thinking their doctors 'did all they could for me.' What a pathetic racket!




_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#227196 - 02/11/12 11:56 PM Re: Sticky wanted on Diet [Re: JenInCincy]
drizzit Offline
Registered Visitor

Registered: 02/18/06
Posts: 1927
Originally Posted By: JenInCincy


That is not factual. SAA has little info on this diet because

"To date, none of these claims have been substantiated by rigorously controlled studies." (source: http://www.spondylitis.org/about/diet.aspx)

The published papers are theoretical in nature. They do not report on actual studies of the diet - using a control group. From http://www.spondylitis.org/about/diet_lowstarch.aspx

"In 1996, in a paper supporting his theory, Dr. Ebringer published the chart of one of the patients that he had been following over a period of time. The patient’s sedimentation rate (ESR) showed a clear decline from 1983 to 1995, during which time he had followed the special diet. It is important to note that although ESR is sometimes used as a measure of disease activity in patients with arthritis, it is recognized that ESR levels in AS are not necessarily indicative of how well a patient feels. Dr. Ebringer believes that the lowering of said patient’s ESR level demonstrated the success of the diet.

"Other studies have failed to duplicate the results of Ebringer’s research into how a low starch diet influenced the growth of klebsiella in the gut and have found that the diet has little or no effect on symptoms." [emphasis added]


Have to admit that the main way my doc tells if the TNF is working is by the CRP numbers. That is an inflammatory number just like ESR is. There is no question we use blood work on inflammation for some people to let us know how effective treatment is. However there are those who show no inflated ESR or CRP and definately are suffering from AS. Seems to be one of those it works for me to indicate disease activity but certainly not all. For me ESP and CRP are definately indicators of disease activity and how I feel.

I would also like to read those other studies to see if they were rigorous and double blind or just as non controlled as Ebringers was and thus no more reliable in saying the diet doesn't work. To me the Jury is still out


Edited by drizzit (02/11/12 11:58 PM)

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#244506 - 11/27/12 11:53 AM Re: Sticky wanted on Diet [Re: JenInCincy]
KarenW Offline
Registered Visitor

Registered: 11/24/10
Posts: 11
You wrote: The statements here about the low starch diet are opinions, not proven facts, although people who state them claim them as facts. They cannot be backed up by rigorous research.

Why can these claims not be backed up by rigorous research? I realize that these claims have not until now been backed up by research, but is there a reason why they cannot be?

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#244512 - 11/27/12 01:14 PM Re: Sticky wanted on Diet [Re: Chris Miller]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
No, of course not. You misunderstood what I wrote. I didn't mean that it will never be possible to back up the claims with research. They cannot be backed up at this time by rigorous research that has been conducted and published in peer reviewed scientific journals - because no such research exists. Of course, there is also no published research that shows the diet does NOT work as claimed by some. There is really no scientific data at all - only theories, opinions, and beliefs.

I am not making any claims of fact; I'm not "against" the diet or anything like that. I just think it's important to be clear on the difference between known facts and speculation, wishes, hopes, etc.

Research is definitely needed to provide evidence to support or refute such claims. Until that research exists, however, the statements about the low starch diet are opinions, not facts.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244540 - 11/28/12 05:15 AM Re: Sticky wanted on Diet [Re: KarenW]
SeanP Offline
Registered Visitor

Registered: 04/11/12
Posts: 30
Loc: uk
Hi Karen

I am in the UK and new to this forum.

The UK - NASS Website goes one stage further and follows the line that Jen was alluding to. They actually say that diet cannot be studied!

It says of the Ebringer Research -

"It is difficult to research into diet. When new medicines are tested the researchers might give one group the new medicine and another group a dummy or placebo medicine. Even the doctors treating the patients in the medical trial might not be told which patients are taking the trial medicine and which the dummy medicine so that this knowledge does not influence the results. This is known as a double blind trial. We know from research that double blind trials, in which neither the patient, nor the observer knows which treatment has been given, is the best way to show if a treatment actually works.

However, when researchers experiment with diet and try to look at how diet can influence disease, it is impossible to carry out certain research protocols such as using controls or dummy treatments. Neither the person eating the diet nor the person taking measurements after the diet can be blinded as to which diet has been used. It's also not possible to confirm that someone is sticking rigidly to the diet without any lapses.

For this reason NASS can neither give its sanction nor refute the hypothesis that the low starch diet will help patients with AS. It remains a hotly debated subject among doctors. We do however offer the main principles below. It is always important to check with your doctor or member of the rheumatology team before trying any new diet."


And this is tucked away at the bottom of the NASS pages on diet, underneath their primary advice to eat a balanced diet with grains etc. Their stance on any diet research is effectively condeming any success on diet as 'anecdotal'. In light of the pain being sufferred by 10's possibly 100's of thousands - this is truly criminal.

Even their advice on the NSD is dreadful - 'No restriction on beverages'. Beer and Guiness (grain based) caused my hips to flare for weeks. I just have to live with wine and chocolate for my treats instead grin

We are all being duped in to the authoratative nature of these big budget sometimes 'pharma' backed websites.

I urge anyone reading this to give diet a go - I am not NSD but have had good success on strict elinination of Corn, Wheat, most dairy, barley, rye etc. I do avoid all starches for periods if I have a flare and it works - not always immediately and as Tacticus said on another one of his passionate posts might take 200 hours or more. I recognise that I am one of the lucky ones - and am committed (as I can see others are on this thread) to help others.

If you have Crohns - do NSD or look up SCD. Heal the gut first then work eliminating possible food allergies that you may have developed from the damaged gut.

I have a question for others on the this thread - do you think that there are other factors to the autoimmune than just Klebsiella. From my experience I think there might be other "Molecular Mimicry" responses to food proteins?

My observations are that my ongoing semi-contained now mild AS effect certain joints (back, sometimes ribs, sternum), yet if I ingest wheat it throws lots of other joints and organs off. Dairy attacks my skin.

There is a chap that posted on another site that has a website blog called 100percenthealth.us and he has been eliminating allergies with some success as well as a LSD.

I saw some of Tacticus earlier posts - from back in 2006. Classic work and the softer sell is starting to bite!

Strength to you all - there is not a cure but there is another way!


Edited by SeanP (11/28/12 09:12 AM)
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244552 - 11/28/12 10:11 AM Re: Sticky wanted on Diet [Re: Chris Miller]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
What you quoted from NASS is correct. It IS pretty much impossible to do a double-blinded, placebo-controlled study on the NSD the way you would with a drug. It is pretty easy to give a placebo substitute for most pills, injections, etc. But it obviously would not be feasible to keep someone in the dark as to whether or not they were on the diet. If certain foods are not permitted, they have to know it so they don't eat it.

That doesn't mean that all study is impossible; and NASS didn't say that, either. They said double-blind placebo-controlled studies are the best, and that is true. But prospective observational studies can be done, and they're better than nothing. Ideally a study of the diet would include subjects who agree to be randomly assigned to a normal diet, or the NSD.

You can't expect the NASS or any other legitimate organization to endorse the NSD when there is no research backing up its efficacy. That would be irresponsible of them. What you quoted is clear - they can neither endorse nor refute it. Seems reasonable and fair. That said, it is also irresponsible for them to give incorrect "guidance" on the diet!
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244563 - 11/28/12 01:33 PM Re: Sticky wanted on Diet [Re: SeanP]
NotMeToo Offline
Registered Visitor

Registered: 07/12/04
Posts: 1107
Loc: United States
Originally Posted By: SeanP
Even their advice on the NSD is dreadful - 'No restriction on beverages'. Beer and Guiness (grain based) caused my hips to flare for weeks. I just have to live with wine and chocolate for my treats instead grin
Sean, the NSD dietary advice on the NASS website is the same as Ebringer's "London AS Diet" as published on the KickAS.org website. http://www.kickas.org/londondiet.shtml
Originally Posted By: KickAS.org
"NO RESTRICTIONS ON BEVERAGES OR SPICES (Pepper, salt or herbs)"
Although you may feel that you have problems with drinking beer/Guiness, that was apparently not Dr Ebringer's advice in the "London AS Diet". NASS, like the SAA, has been pretty careful to take a neutral position on the diet - as is appropriate for an as yet unproven (though not apparently harmful) theory.
_________________________
Not Me Too!

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#244570 - 11/28/12 04:31 PM Re: Sticky wanted on Diet [Re: NotMeToo]
SeanP Offline
Registered Visitor

Registered: 04/11/12
Posts: 30
Loc: uk
Thanks - I stand corrected on the Ebringer Diet. I confuse my own regime with the original NSD.

For me this raises a few red flags - as I have strong view that a factor in the initial damage to the gut is linked to gluten intolerance, as this is too common to be ignored in non AS sufferers let alone us more sensitive soles.

I have followed a strict grain free (including beverages) for about 20 years now - my AS kicked in at 19 - but I caught it at 26 with my diet and supplements. I think the supplements - especially magnesium may not only help to keep my bones and ligaments (manganese too) stronger against the disease but it also creates a high alkaline gut thus creating a hostile environment for klebsiella to thrive.

I found the SCD diet by Elaine Gotterscall before I first saw the NSD diet and this too eliminates all starches including complex sugars polysaccharides that can feed the klebsiella and other gram negative bacteria. It differentiates grain based beverage from other alcohol like wine and apple cider.

These are some of the many reasons why I would not recommend beers on an elimination diet for fighting AS.

As for the neutral position taken by NASS and SAA on "the diet" - it is not what it says it is how it says it - I would say it damns with faint praise.

For reading further to inspire anyone who might want to understand how what we eat impacts health -

[*]Google Dogtorj.com - an amazing vet that improved his own health once he realised what was making dogs ill!

[*]Also search for Terry Wahls - who treated her own advanced MS with diet

[*]Lastly - seek out the 100's of success stories on Kickas.org and plenty here too - we are not anecdotes we are fact - each one of us is evidence of another way to try and fight this horrible disease. It's not an easy way...

I have a question for the non diet followers here - what do you think an initial AS sufferer at age 17 or a JIA suffering 12 year old should be advised first by the medical profession? I see children with sore knees being prescribed Methodrexate by doctors that because of the unproven (unstudied) diet options - although well meaning might be initiating the common cycle I see of 1 drug then the next drug - then the experimental drug later on - damaging the gut lining of that child as they attempt to "do good".

If Ebringer and others are right then I think his protocols should be attempted at the very first stages before we potentially go down these well trodden paths. I must also add that Ebringer has published other Molecular Mimicry work in 2010 related to Rheumatoid Arthritis and cross reaction to a bacteria "proteus mirabilis". Similarly the streptococcus bacteria is implicated in Psioratic arthritis. Let alone auto-immune reaction as a result of complex food proteins such as casein and gliadin.

The genie is out of he bottle and It will be difficult to cover this up much longer - I believe the real saviours will come from the celiac and gluten research areas as their focus is diet - although I am beginning to doubt some of their motives too. They are developing a pill that allows people to carry on eating foods that cause celiac - they have also proved that there are many prior stages to celiac and they want all potential celiacs to take this pill too. Clever so and so's making money out our addiction to our western diet. Ref - Dr. Fasano - University of Maryland.

Strength to you all - whatever you try!
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244592 - 11/29/12 07:05 AM Re: Sticky wanted on Diet [Re: SeanP]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Originally Posted By: SeanP
I have a question for the non diet followers here - what do you think an initial AS sufferer at age 17 or a JIA suffering 12 year old should be advised first by the medical profession?


Initial treatment recommendations for these and every disease should be based upon the available evidence. If certain treatment options are supported by strong evidence they should be tried first. If the most strongly supported options do not work, cause side effects, etc. then you move on to other treatments with less supporting data.

Quote:
If Ebringer and others are right then I think his protocols should be attempted at the very first stages....


I agree - IF they are right. The trouble is that using a dietary approach as the initial treatment is unsupportable based on the existing evidence (or, in this case, due to the LACK of evidence recommending this approach.)

Quote:
The genie is out of he bottle and It will be difficult to cover this up much longer


What genie? Nothing is being "covered up." Ebringer's theories are out in the world. We just need the research to provide an evidence basis for whether or not (or when) the dietary approach should be recommended/tried.

Quote:
They are developing a pill that allows people to carry on eating foods that cause celiac .... Ref - Dr. Fasano - University of Maryland.


Fascinating!! Can you provide more info on this? I'd love to read more.

Although I'm not an adherent to the diet, I'm not against it; maybe I'll even try it one day! I see no reason informed adults shouldn't try dietary approaches if they so desire. Like NMT said, the NSD is unlikely to be harmful provided the person trying it is careful to meet their basic nutritional needs.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244617 - 11/29/12 02:53 PM Re: Sticky wanted on Diet [Re: Chris Miller]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Jen - I find your answer interesting. All I can say is that we are poles apart on this.

It is a shame to hear that you would submit a child to the possible treadmill of drug treatment - I don't know how representative the horrendous stories of drugs not working that I see and hear from others I know - do you know the stats?

I have a 13 year old and 10 year old - if they ever get any autoimmune disease then I am 99% sure i would put them on an elimination diet - before allowing a doctor to give any of the strong stuff. I've seen my Dad suffer too much on meds - and I've seen too many stories apart from my own that provide me sufficient evidence that a few weeks perhaps 4 of a trial would be much much safer than starting meds. For me meds would be the last resort not the first.

If there are no studies done on dietary approaches then shame on the medical profession for that - we can have this debate forever and you will use the same "no evidence" put down time and time again. The genie is the truth - the cover up is the lack of study in the face of 1000's of success stories.

I am slightly confused by your presence on most posts on diet - especially as you have not given it a good try yourself. It would be a bit like me going on to one of the other threads and telling someone considering Humira that I didn't really think it was any good - I won't do that because I have no experience. Are you diet curious - your persistence is muddying the waters for anyone that wants to give dietary approach a try?

There is a lot of debate in the world as to what a balanced diet is - Paleo is proving to be quite successful with many people feeling better than ever.

I admit that for me the Ebringer research is not cut and dried - and there are more factors in play, including food intolerance / allergy and other bacteria apart from klebsiella. So instead of saying Ebringers research has not been replicated - take a look at the success of elimination diets of different types on all sorts of auto immune diseases. You will see a pattern. There are more than just the AS success stories out there.

For me the research of Dr Fasano is interesting - but is also hugely disturbing, suggesting that up to 10% of the western world should take a pill to allow them to keep eating wheat - when there are other researchers proving that anti-gliadin antibodies are common in many non celiacs - especially those with auto immune diseases - why not just stop eating it! Links as requested -

http://www.webmd.com/digestive-disorders/video/pill-celiac

http://celiacdisease.about.com/b/2011/03...sensitivity.htm

http://www.direct-ms.org/sites/default/files/Fasano%20Celiac%20other%20autoimmune%20disease.pdf

When put with this - Juvenille Arthritis

http://europepmc.org/abstract/MED/1764847

I am sure those researchers were happy that gut permeability was present before the meds.

There does not seem to be any one group trying to link different research and studies they all have there own narrow aim!








Edited by SeanP (11/29/12 03:29 PM)
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244646 - 11/30/12 08:03 AM Re: Sticky wanted on Diet [Re: Chris Miller]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Sean, I agree that our opinions on the dietary approach are very different. I prefer to rely on interventions backed by research showing their efficacy and safety. And yes, I know the stats.

I don't need to have experience with the diet to post about it. I post about it to clarify misconceptions - that opinions and experiences, wishes and hopes, are not the same as valid scientific data and evidence. My own personal experience & opinions are irrelevant on the topic. I'm here to remind people that any support of the diet is not based on scientifically established fact.

If you went out there and expressed an opinion that Humira was bad it would be just that - your opinion. There is evidence behind Humira's claims of efficacy that can be used by anyone weighing the decision to use it or not use it. Opinions are more or less irrelevant unless they are solicited - but if solicited your opinion would be valid as anyone's would be; you just couldn't claim personal experience as the reason for that opinion. But people have a lot of reasons for the opinions they hold - their personal experience is just one part of it.

You may not be aware of how judgmental your post was. You see, I am also a parent - of an 11 year old and a 13 year old. My 11 year old DOES have an autoimmune diagnosis - Crohn's disease. She was diagnosed a week after her 3rd birthday but was symptomatic starting in her (exclusively breastfed) infancy. There is a lot of evidence regarding the efficacy and safety of all the medications she has been on over the years.

Lucy's first med post-diagnosis was prednisolone - obviously a scary one but given the state of her health at that time and the known remission-inducing capability of steroids for this disease, the choice was not a hard one for me. Fortunately she was able to taper relatively quickly and did not suffer any untoward side effects in her growth & development (or otherwise.)

At that time she also started an immunomodulator, 6-MP, which worked well for years and then started to fail, so was augmented with a 5-ASA medication (mesalamine) and a delayed-release steroid, Entocort, specifically formulated for IBD. Those things didn't do so great either so we brought out the big guns and started Remicade about 2.5 years ago. It has been AMAZING for her. I did all my homework on Remicade - I started reading the scholarly work on it years before she went on it, because I knew it was pretty likely she'd eventually require anti-TNF therapy (at diagnosis her disease was categorized as moderate-to-severe.) It was a VERY informed decision. The possible serious side effects are scary but thankfully very very rare. Fortunately she has done well on Remicade - great efficacy and no complications.

Obviously the LSD/NSD diet is pushed for IBD as for SpA, if not more. I would have LOVED to use a dietary approach. I own, and have read, Sinclair's book, believe it or not. However, there was simply no way to justify even a few weeks of a dietary approach. In the face of months of delay to the diagnosis, frequent bloody diapers and a child with daily stomach pain, we needed an approach supported by data. Sure, all the drugs had potential risks but they were outweighed by the potential benefits, and in the end, those have been good decisions.

So please do not think that you know what you would do if your child had one of these diseases. It is easy to blithely say you would do the diet first. Maybe you would feel differently if you had to change a few bloody diapers.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244679 - 11/30/12 06:00 PM Re: Sticky wanted on Diet [Re: JenInCincy]
butters Offline
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Registered: 05/16/12
Posts: 66
Just seeking some clarification as I think I must be missing something.

Quote:
I would have LOVED to use a dietary approach. I own, and have read, Sinclair's book, believe it or not. However, there was simply no way to justify even a few weeks of a dietary approach.


I can completely understand and agree with not delaying evidence based pharmaceutical treatments in order to experiment with unproven dietary approaches. What I don't understand is why taking medications and experimenting with diet would be mutually exclusive events and why a risk/benefit analysis of dietary approaches that you consider to be "unlikely to be harmful" would not come out in favour of giving them try.

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#244683 - 12/01/12 02:12 AM Re: Sticky wanted on Diet [Re: butters]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Butters

I agree and I did not say diet only for chronic conditions - all I said was don't roll out the strong stuff for less chronic onset conditions. Which is what I have seen testament to on other forums. Try a diet approach soon enough and hopefully you would not need to resort to strong stuff in some cases.

The "unlikely to be harmful" phraseology might leave enough doubt regarding a dietary approach for some viewers of this site to put them off trying. Lets try "it won't be harmful to try" - and before I get pounced on - whilst you are trying then , if conditions worsen enough to warrant involving stronger medication then as Jen says it would obviously be incorrect to let anyone suffer.

Also when trying diet - I am not saying no medication but I would say that any medication that damages the gut should be avoided - otherwise you would never know if a dietary approach was ever going to work for the individual. On some of the medications it would probably be irrelevant as until you heal the gut - disease will prevail.


Edited by SeanP (12/01/12 06:32 AM)
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244715 - 12/02/12 03:47 AM Re: Sticky wanted on Diet [Re: Chris Miller]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Found this to support -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3085976/


Conclusion from this report was
"In this case report, a patient with a two-year history of enthesitis-related arthritis experienced a total resolution of symptoms after avoiding certain inciting antigens and correcting her nutritional deficiencies. Although the conventional approach to enthesitis-related arthritis manages to control patient symptoms and maintain function, years of chronic disease and reliance on medications is not ideal if remission is possible with less toxic measures. Enforcing dietary changes and taking required supplements to address specific nutritional deficiencies requires a high level of commitment on the part of patients and their families, but may offer a better quality of life than the current standard of care. Thus, prior to commencing potentially toxic pharmaceutical interventions, the authors suggest that it is reasonable to consider a detailed assessment and remediation of nutritional biochemistry; an eight-week trial of avoidance of common inciting antigens; and exploration and management of any underlying bio-accumulated toxicant load resulting from adverse environmental exposures."

Why cant this be the normal approach rather than the exception!
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244721 - 12/02/12 08:18 AM Re: Sticky wanted on Diet [Re: Chris Miller]
seekonk Offline
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Registered: 12/06/10
Posts: 1254
There is probably no harm in trying, but case reports should always be taken with a grain of salt, since they are just anecdotes. One problem is that there is no consensus that "inciting antigens" in the diet have anything to do with AS. Many people have flares and spontaneous remissions anyway without dietary changes, and for every story like this case report you will find many people who tried to get better with dietary changes but failed. Better studies should be done on this, but they won't unless funded by governments, and good luck with that in this increasingly cutthroat capitalist society. By the way, the standard of care pharmaceutical interventions for AS, such as TNF blockers, have little or no toxicity.


Edited by seekonk (12/02/12 08:23 AM)
_________________________
Spondylitis since '08, finally diagnosed Feb '11.
Enbrel 50mg/week.

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#244765 - 12/03/12 09:57 AM Re: Sticky wanted on Diet [Re: butters]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Originally Posted By: butters
What I don't understand is why taking medications and experimenting with diet would be mutually exclusive events and why a risk/benefit analysis of dietary approaches that you consider to be "unlikely to be harmful" would not come out in favour of giving them try.


If you start meds and mess with the diet at the same time you don't know which change resulted in improvement (if it is seen.) For this same reason I resist making more than one change in medications at a time, in order to isolate the impact of each drug.

A diet that is unlikely to be harmful to a consenting adult may not be so harmless in a 3 year old. In my reading the only conclusion I could reach was that dietary changes were unlikely to result in an improvement in my daughter's disease - so while the risk of harm may have been low, so was the risk of benefit. Some people with IBD see improvement after removing certain specific foods due to difficulty with digestion etc. but we have yet to find any food or foods that produce problems for her, so we have not seen any need to mess around with her diet.

Also from a pragmatic standpoint, I'm divorced and my kids are with their father 3 days a week. He has a hard enough time keeping up with doctor-prescribed medication regimens for things like ear infections. He would never consent to a special diet based on my wishes; and even if he did agree to try it he would not be capable of carrying it out.

As for the pubmed link - case reports are not evidence, as seekonk explained.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244791 - 12/03/12 02:54 PM Re: Sticky wanted on Diet [Re: JenInCincy]
butters Offline
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Registered: 05/16/12
Posts: 66
Quote:
A diet that is unlikely to be harmful to a consenting adult may not be so harmless in a 3 year old.

Definitely agree with this, I wouldn't put a child on an extreme starch restrictive or carbohydrate restrictive diet, was thinking more along the lines of the more low risk options like gluten-free/dairy-free, elimination diet, elemental diet etc. There are quite a few studies that suggest that dietary interventions (mostly elemental liquid diets) could be effective for crohn's -

'Diet in the management of Crohn's disease' - http://www.ncbi.nlm.nih.gov/pubmed/6526690
21 of 33 patients remained in remission on diet alone, the most important foods provoking symptoms were wheat and dairy products.

'Treatment of active Crohn's disease in children using partial enteral nutrition with liquid formula: a randomised controlled trial' - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856067/
42% remission rate on liquid formula diet.

'Chronic intermittent elemental diet improves growth failure in children with Crohn's disease' - http://www.ncbi.nlm.nih.gov/pubmed/3123302

'Remission induced by an elemental diet in small bowel Crohn's disease' - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1778272/

'Improved Growth and Disease Activity After Intermittent Administration of a Defined Formula Diet in Children With Crohn's Disease' - http://www.ncbi.nlm.nih.gov/pubmed/1494204

'Mucosal healing and a fall in mucosal pro-inflammatory cytokine mRNA induced by a specific oral polymeric diet in paediatric Crohn’s disease' - http://www.ncbi.nlm.nih.gov/pubmed/10735920
After 8 weeks 79% of children were in complete clinical remission.

'Polymeric nutrition as the primary therapy in children with small bowel Crohn's disease' - http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.1994.tb00338.x/abstract

'Improvement of abnormal lactulose/rhamnose permeability in active Crohn's disease of the small bowel by an elemental diet' - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1433221/

'Controlled trial comparing an elemental diet with prednisolone in the treatment of active Crohn's disease' - http://www.ncbi.nlm.nih.gov/pubmed/2179093
The present study strongly suggests that elemental diet is superior to steroids for treating active Crohn's disease.

Quote:
Also from a pragmatic standpoint, I'm divorced and my kids are with their father 3 days a week. He has a hard enough time keeping up with doctor-prescribed medication regimens for things like ear infections. He would never consent to a special diet based on my wishes; and even if he did agree to try it he would not be capable of carrying it out.

Thanks for explaining, can definitely see how that would make it virtually impossible.

Quote:
As for the pubmed link - case reports are not evidence, as seekonk explained.

How is a documented and published case report not a form of evidence? I understand that no strong conclusions can be drawn from anecdotal evidence and case reports, that they are subject to many potential sources of bias and error and are inferior to double blind placebo controlled trials, but I don't see how they can be completely disregarded as evidence. It's bit like saying that a chihuahua isn't a dog - it may look more like a rat and be useless at hunting and chasing burglars, but it is still a dog.


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#244806 - 12/03/12 09:24 PM Re: Sticky wanted on Diet [Re: butters]
NotMeToo Offline
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Registered: 07/12/04
Posts: 1107
Loc: United States
Originally Posted By: butters
Quote:
A diet that is unlikely to be harmful to a consenting adult may not be so harmless in a 3 year old.

Definitely agree with this, I wouldn't put a child on an extreme starch restrictive or carbohydrate restrictive diet, was thinking more along the lines of the more low risk options like gluten-free/dairy-free, elimination diet, elemental diet etc.

I have to agree that dietary restriction that may be "unlikely to harm" an adult may not be harmless to a child - or a developing body of any age. Unlike adults with relatively stable dietary needs, children have different dietary needs at different stages of development. Even things that sound harmless like "dairy free", may not be harmless to a child in a developmental stage that requires higher amounts of fat, calcium, protein, vitamin D, etc. (pick one...) without an appropriate dietary replacement. I have no issue with appropriately medically supervised dietary modification for children when diagnosis or symptoms warrant it. I do have a problem with encouraging parents to try dietary change without involving a qualified medical doctor.

Human males stop growing in height when the epiphyseal plates (or growth plates) close - somewhere between the ages of 17 and 22. As most men on here will attest, the male body continues to develop and build strength and muscle mass well into the mid to late 20's. Females stop growing in height much sooner - about 2 years after they hit puberty (at about age 12 - 16). They too continue to develop and mature into their 20's. An ill-advised dietary restriction at the wrong point in a developing body's life could cause irreversible harm. Seeking the advice and guidance of the child's (or young adult's) doctor should be the first step - as it appeared to be in the case report cited above.

Originally Posted By: butters
Quote:
As for the pubmed link - case reports are not evidence, as seekonk explained.

How is a documented and published case report not a form of evidence? I understand that no strong conclusions can be drawn from anecdotal evidence and case reports, that they are subject to many potential sources of bias and error and are inferior to double blind placebo controlled trials, but I don't see how they can be completely disregarded as evidence.


You have essentially answered your own question. Case Reports are a medical professional's way of reporting or retelling anecdotal evidence. They are primarily a record of an individual patient’s progress. Case reports are valuable in terms of documenting and conveying what is seen in actual medical practice. They should not be disregarded entirely, but they also should not be used to draw assumptions about either causes or cures/treatments. While a collection of case studies may well lead to in depth medical studies, standing alone, they are simply "stories".

From The Guidelines To The Writing Of Case Studies" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2597880/
"While case studies cannot provide specific guidance for the management of successive patients, they are a record of clinical interactions which help us to frame questions for more rigorously designed clinical studies."

Originally Posted By: butters
It's bit like saying that a chihuahua isn't a dog - it may look more like a rat and be useless at hunting and chasing burglars, but it is still a dog.


A different way to look at it would be to have a yard full of an unknown (but large) number of dogs. Since the first dog that the dog-catcher scoops up in their net happens to be a chihuahua, should the observer assume that all of the other dogs are chihuahuas? Most of the other dogs? Any of the other dogs? No. Without further information (studies - or classifying the dogs) you can not make that sort of assumption - or really any assumption at all.
_________________________
Not Me Too!

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#244818 - 12/04/12 12:14 AM Re: Sticky wanted on Diet [Re: NotMeToo]
butters Offline
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Registered: 05/16/12
Posts: 66
Quote:
Even things that sound harmless like "dairy free", may not be harmless to a child in a developmental stage that requires higher amounts of fat, calcium, protein, vitamin D, etc. (pick one...) without an appropriate dietary replacement.

Unless you are talking about a child at breast feeding age who cannot breast feed for whatever reason then I don't see how there is any risk to a dairy free diet. Up until recently the majority of cultures consumed no dairy products e.g. most African and Asian cultures, Native Americans, Polynesians, Australian Aborigines. Even Europeans have only been consuming dairy products for around 10,000 years which is a blink of an eye on an evolutionary scale so I struggle to see how humans could have developed any sort of nutritional requirement for dairy products outside of the weaning phase.
Quote:
I have no issue with appropriately medically supervised dietary modification for children when diagnosis or symptoms warrant it. I do have a problem with encouraging parents to try dietary change without involving a qualified medical doctor.

I certainly wouldn't encourage leaving doctors out of the loop. I would have assumed that any dietary changes for a child would be discussed with their doctor or a qualified nutritionist.
Quote:
A different way to look at it would be to have a yard full of an unknown (but large) number of dogs. Since the first dog that the dog-catcher scoops up in their net happens to be a chihuahua, should the observer assume that all of the other dogs are chihuahuas? Most of the other dogs? Any of the other dogs? No. Without further information (studies - or classifying the dogs) you can not make that sort of assumption - or really any assumption at all.

I agree with the logic there. I guess it all depends on what claims are being made. Some people make ridiculous claims about the efficacies of particular diets, their mechanism of action, and their applicability to different diseases. I don't think starch-restrictive diets are the be all and end all. I think there are many different dietary factors that can play a role and that individuals will respond differently to different foods/diets. If I was to make a claim it would be along the lines of - "Dietary modification may be beneficial to spondyloarthropathy patients. A rational analysis of the potential risks of dietary changes (very small) compared to the potential benefits of dietary changes (very large) would suggest that this is something that is worth experimenting with."

Evidence that diet changes may be beneficial for spondyloarthropathy patients
- One small published diet study of 36 patients with statistically significant decreases in ESR, the majority experiencing a reduction in symptoms and some experiencing complete elimination of symptoms.
- Published claims that over 450 patients were treated with diet Middlesex Hospital with over half no longer requiring medication.
- Published case reports of improvements following dietary modification.
- Many anecdotal reports of improvements following dietary modification.
- Evidence that spondyloarthropathy is related to gut inflammation and many plausible mechanisms by which diet can affect gut inflammation and also systemic inflammation.

Obviously at this limited level of evidence, a practitioner of evidence based medicine isn't in a position to prescribe any specific dietary recommendations although doctors sometimes suggest experimental diet treatments that have a theoretical rationale such as in the case report above. So until better studies are done, each spondyloarthropathy patient has to decide how to proceed under the current conditions of incomplete information and decide what dietary changes they think are worth experimenting with.

"Understanding how to act under conditions of incomplete information is the highest and most urgent human pursuit" - Nassim Taleb

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#244831 - 12/04/12 06:11 AM Re: Sticky wanted on Diet [Re: JenInCincy]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Jen

I saw one of your other posts regarding a treatment that reacted with you - you said

"I once had a systemic hypersensitivity reaction to EYE DROPS (antibiotic, not steroid, but still - amazing how things can go body-wide!)"

http://www.ncbi.nlm.nih.gov/pubmed/22825366

and not least

http://www.biomedcentral.com/1741-7015/10/13

More than few chihuahuas there for the naysayers.

Wait 5 years and "evidence based" will have to get their heads out the sand and start revealing the evidence that I am sure many have known about for 10+ years.

I joked with a colleague about 15 years ago (he used laugh at my no wheat stance, before I we had Internet!) - I said that within my lifetime there will be a recognition of the damage that some of our staples are doing to us.




Edited by SeanP (12/04/12 06:42 AM)
_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

Top
#244834 - 12/04/12 06:59 AM Re: Sticky wanted on Diet [Re: butters]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
All the article links have to do with the use of parenteral or elemental diets in IBD. I'm familiar with this approach. The benefit is not conferred by it being a NSD/LSD, but is mainly due to the "bowel rest" such a regimen permits. Though this may encourage mucosal healing/induce remission in IBD, most people won't maintain that remission upon reverting to a normal diet. The authors of the 2nd article you referenced below concluded as much: "[L]ong term nutritional supplementation, although beneficial to some patients, is unlikely to suppress inflammation and so prevent disease relapse."

Interesting that all the articles you linked to (but one) are over 20 years old. Here is a nice (free access) summary of the evidence from 2009, which supports the use of enteral nutrition for induction (but not maintenance) of remission - especially in children with growth retardation due to IBD: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2691486/

As my daughter was diagnosed in 2004 and had not had growth problems, nutritional approaches were not part of the treatment plan discussion. There is no way I would abandon the Remicade now, as it has worked so well, and since it IS working, I feel no need to mess with her diet. As it happens, she has had a hydrogen breath test and she is not intolerant to lactose.

Originally Posted By: butters
How is a documented and published case report not a form of evidence?


Technically it is a form of evidence, but it is a very low level of evidence. Here are two examples of the types of scales commonly used to grade evidence. The first has many levels but non is "single case study." In the second, case study is the weakest type of evidence listed.

Evidence Grading Scale
M: Meta-analysis
A: Randomized controlled trial: large sample size (n >100)
B: Randomized controlled trial: small sample size (n <100)
C: Prospective trial or large case series
D: Retrospective analysis
O: Other evidence
S: Review article
E: Expert opinion or consensus
F: Basic Laboratory research
L: Legal requirement
Q: Decision analysis
X: No evidence


Levels of Evidence
I Good-quality patient-oriented evidence.
II Limited-quality patient-oriented evidence.
III Other evidence including consensus guidelines, opinion, or case studies.


The difficulty with relying upon case reports and anecdotal evidence is that for every success story there are other stories of failure; but we don't know how many. So an author publishes a case report; but suppose s/he had 99 other patients with the same problem, given the same treatment, who did not respond positively? That would start to look like data/evidence - unless it wasn't published because it didn't support the author's hypothesis/bias.

Case studies should only be relied upon as evidence when there is essentially NOTHING else to inform a decision.


Originally Posted By: butters
Unless you are talking about a child at breast feeding age who cannot breast feed for whatever reason then I don't see how there is any risk to a dairy free diet.


Come on ... don't be so literal. NMT was just using it as an easy example of something people might eliminate, not saying a dairy free diet is, in general, risky. In the USA most people consume a lot of dairy products, which can make up a large portion of a person's dietary fat consumption. Dietary fat is crucial for brain development and absorption of fat-soluble vitamins such as vitamin D. So, if you were to eliminate the primary source of dietary fat from your child's diet you would want to think carefully about replacing it.




Sean, I am already familiar with this information but don't understand why you are connecting it to my drug hypersensitivity reaction?

The new classification of wheat/gluten related health issues is a clarification of what was previously known. It is hardly a sweeping indictment of wheat or an indication that wheat is fundamentally bad - though I'm certain it is a larger problem than is even yet realized. Not at ALL clear what this has to do with SpA, IBD, and the LSD/NSD. I do believe that if people respond to the reduction/elimination of a particular food (or if they have a clear bad reaction to a certain food!) they may want to look into testing for hypersensitivity - or at a minimum, avoid the food.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#244835 - 12/04/12 07:04 AM Re: Sticky wanted on Diet [Re: butters]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
duplicate - deleted

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#244861 - 12/04/12 04:49 PM Re: Sticky wanted on Diet [Re: JenInCincy]
SeanP Offline
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Registered: 04/11/12
Posts: 30
Loc: uk
Jen

Vitamin d is only present in milk due to fortification with vitamin D2 - which is not a particularly absorbable form. There is more absorbable calcium in broccoli and other green vegetables than milk - partly due to its balance of protein and magnesium. I haven't had a drink of milk for 20 years and have black coffee - my children do not drink milk either. If I eat ice cream or cream then my skin erupts - for me and others dairy = eczema. In the UK some people have started to move to goats milk to avoid the casein.

As you said - if you have a reaction to a food then remove it - especially if its poisoning you.

The reason I attached those links to your previous post was to highlight that there is gut damage from gluten even in non-celiacs - and there are other studies that show flattening of villi in non celiac and seemingly healthy people. I guess from your posts that you are already aware of this stuff - but given your wonder and surprise that a small amount of something can have such a systemic reaction in the body - made me think about your scepticism and reluctance to try diet & supplements for yourself and to some degree deter others.

My view is that as the research points towards for a lot of us

Susceptible genes + diet = gut damage = malabsorption = triggers allergy to some dietary proteins

Gut damage + some dietry proteins / bacteria = inflammation and autoimmune

Therefore removing the offending dietary allergens (might be different in each person - wheat, corn, dairy, eggs) and then if necessary reducing levels of bacteria that we might have developed auto-immune responses to. In AS the research has focused on Klebsiella but my AS came back out of 2 year remission following a severe tummy bug. In Rheumatoid the focus is Proteus Mirabilis and in PSA the target culprit is Streptococcus (also implicated in Autism nearly all have crohns).

As others have said - autoimmune reactions can work across the gut and other mucous membranes (nostrils) so there can always be a battle.

I can see that many that many on medication for a long time or have lots if damage from their arthritis - do not have as many options - but I feel very strongly that newly diagnosed or even undiagnosed people reading this thread should be aware of his information before buying wholesale in to standard medical treatments.

_________________________
Strength to you all! Whatever you try...

About 75% better than the worst I have been... but still flare from time to time - I do NSD or LSD in emergencies but always restrict wheat, corn, rye and other grains. Have helped friends with my experiences - 20 years now!
Here is a link to my story -
http://www.arthritisforum.org.uk/stories/storysean.html

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#244870 - 12/04/12 07:03 PM Re: Sticky wanted on Diet [Re: JenInCincy]
butters Offline
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Registered: 05/16/12
Posts: 66
Quote:
All the article links have to do with the use of parenteral or elemental diets in IBD. I'm familiar with this approach.

None of the articles were about parenteral nutrition, they were about enteral, elemental and polymeric nutrition.
Quote:
The benefit is not conferred by it being a NSD/LSD, but is mainly due to the "bowel rest" such a regimen permits.

I am not an advocate/supporter of starch-restrictive diets or claiming that these studies are evidence of their efficacy, the point of linking to the studies was to show that gut inflammation can be affected by variations in the type of food entering the intestines. The 2nd article addresses the idea of "bowel rest" -

"In the past, the effect of “bowel rest” on active Crohn's disease was studied in adult patients. Patients were randomised to TEN, total parenteral nutrition, or a combination of parenteral nutrition and normal food, and remission rates in each group were not significantly different (approximately 65%). Although the study was underpowered, it was concluded that “bowel rest” was not an important factor in nutritional therapy for active Crohn's disease."
Quote:
Though this may encourage mucosal healing/induce remission in IBD, most people won't maintain that remission upon reverting to a normal diet.

Yes that's right, indicating that the changes in diet can have a dramatic effect on disease activity.
Quote:
The authors of the 2nd article you referenced below concluded as much: "[L]ong term nutritional supplementation, although beneficial to some patients, is unlikely to suppress inflammation and so prevent disease relapse."

What they were referring to was a diet that was 50% enteral nutrition and 50% unrestricted diet. The effects of a 50% unrestricted diet negated most of the benefits of the 50% enteral diet. Using intermittent periods of a 100% enteral diet seems to be much more effective.
Quote:
Interesting that all the articles you linked to (but one) are over 20 years old.

Actually 3 of them were from the 2000's. Some of the old research from the 70's and 80's is awesome. My favourite is the crazy Canadian researchers that deliberately inoculated themselves with ureaplasma to test the effect of antibiotics on reactive arthritis - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1049094/
Quote:
Here is a nice (free access) summary of the evidence from 2009, which supports the use of enteral nutrition for induction (but not maintenance) of remission - especially in children with growth retardation due to IBD: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2691486/

Thanks. Why do you say "but not for maintenance" when the study seems to be pro EN for maintenance - "the available evidence suggests that supplementary EN may be effective for maintenance of remission in CD."
Quote:
Technically it is a form of evidence, but it is a very low level of evidence.

Agreed

Quote:
The difficulty with relying upon case reports and anecdotal evidence is that for every success story there are other stories of failure; but we don't know how many. So an author publishes a case report; but suppose s/he had 99 other patients with the same problem, given the same treatment, who did not respond positively? That would start to look like data/evidence - unless it wasn't published because it didn't support the author's hypothesis/bias.

Agreed, the success/failure rate for any particular dietary regime is unknown and will naturally be biased toward over reporting success and under reporting failures. This can also be true of pharmaceutical treatments as drug companies aren't obliged to publish trials which have negative outcomes -

"Sometimes, drug companies conduct lots of trials, and when they see that the results are unflattering, they simply fail to publish them... And this data is withheld from everyone in medicine, from top to bottom. NICE, for example, is the National Institute for Health and Clinical Excellence, created by the British government to conduct careful, unbiased summaries of all the evidence on new treatments. It is unable either to identify or to access data on a drug's effectiveness that's been withheld by researchers or companies: Nice has no more legal right to that data than you or I do, even though it is making decisions about effectiveness, and cost-effectiveness, on behalf of the NHS, for millions of people.

In any sensible world, when researchers are conducting trials on a new tablet for a drug company, for example, we'd expect universal contracts, making it clear that all researchers are obliged to publish their results, and that industry sponsors – which have a huge interest in positive results – must have no control over the data. But, despite everything we know about industry-funded research being systematically biased, this does not happen. In fact, the opposite is true: it is entirely normal for researchers and academics conducting industry-funded trials to sign contracts subjecting them to gagging clauses that forbid them to publish, discuss or analyse data from their trials without the permission of the funder." - Ben Goldacre


Quote:
Come on ... don't be so literal. NMT was just using it as an easy example of something people might eliminate, not saying a dairy free diet is, in general, risky.

Sorry, I must have interpreted it wrong. I guess I have a bee in my bonnet about the idea that dairy products are an essential food group, which seems to be quite wide spread.

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#251954 - 05/09/13 09:00 AM article on AS and diet therapy
bamboospine Offline
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Registered: 08/03/12
Posts: 6
Hello all.

Here is an article I wrote about my experience treating AS with diet:

http://www.thepointmag.com/2012/essays/plea-human-food

It was published in January, but the magazine has just now made it free online. It's a kind of layman's introduction to autoimmunity and diet therapy.

I am trying to spread the word about using diet to treat AS as best I can, so if anyone out there has a way of getting this link to more people, please help!

Thanks,
Charlie

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#251976 - 05/09/13 02:57 PM Re: article on AS and diet therapy [Re: Chris Miller]
RAHMBA Offline
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Registered: 06/27/12
Posts: 474
Loc: Los Angeles, CA
Hi Bamboospine, That's quite a story. It's so long, I'm afraid that I haven't yet read it in detail... I did a bit of skimming in parts :-) I hope people find relief from modifying their diet. I've found a food sensitivity that sets off flares. I did notice that 'Sinclair recently discovered via genetic testing that she had AS all along.' I see that concept confused a lot. There is not a genetic test that determines AS. Most people that have AS have certain genetic markers, but the reverse is not true. Most people with those same genetic markers do not ever get AS. Oddly, having the gene alone (without other signs) means that you are statistically likely not to have AS. So, having a genetic test alone can't tell if a person is going to get or had AS. Also, as a long time member of the SAA, I personally think the wording was a bit harsh with the SAA. Before the SAA, there was no support for people with AS, next to no information on AS and very, very little being done to find a cure. Diet is an issue that comes up at my SAA support group meetings and people discuss their experiences openly. Thanks for bringing awareness to AS and for writing the article. I really found the history very interesting and thought provoking.
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#251979 - 05/09/13 03:34 PM Re: article on AS and diet therapy [Re: bamboospine]
seymour Offline
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Registered: 06/20/12
Posts: 418
Originally Posted By: bamboospine
Hello all.

Here is an article I wrote about my experience treating AS with diet:

http://www.thepointmag.com/2012/essays/plea-human-food

It was published in January, but the magazine has just now made it free online. It's a kind of layman's introduction to autoimmunity and diet therapy.

I am trying to spread the word about using diet to treat AS as best I can, so if anyone out there has a way of getting this link to more people, please help!

Thanks,
Charlie


Great article!

Do you really have bamboo spine or is it just a nickname like that?

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#251997 - 05/09/13 09:18 PM Re: article on AS and diet therapy [Re: RAHMBA]
Tacitus Online
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Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
RAHMBA:

Quote:
Oddly, having the gene alone (without other signs) means that you are statistically likely not to have AS.


This is a scientific impossibility, as-stated. Ebringer has claimed that, with the antigen, the chances for developing Crohn's Disease are reduced considerably. Or, if You mean that, with the progression of age after perhaps frequency peak 19-23, the potential becomes less likely a person with the antigen will develop AS...well that should also be disputed!

It is worth noting that FIFTY percent of HLA B27+ males (in Holland) at some time during their lives seek medical attention for severe "back pain." This compares with FIVE percent in the verified HLA B27- population. AS is transient and variable and often causes no pain even while severe damage progresses.

In re Carol Sinclair: She cannot get an "official" AS diagnosis because she has refused to allow her SIJs to fuse; she does not need the diagnosis anyway, but it would be helpful--and is of considerable value--to know that she is HLA B27+, as was (probably) her hunched-over father and nephews, who also have enough knowledge and sense to properly treat their AS before 'benign neglect' results in obvious easy diagnosis.

The condition of "PRE-AS" should be recognized in the near future, and by then the medical guilds might be capable of preventing the characteristic fusion (permanent damage). The antigen makes PRE-AS much easier to diagnose, but the challenge is to the patient now to prevent AS (99% of rheumatologists are helpless in this quest).

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#252046 - 05/12/13 10:43 AM Re: Sticky wanted on Diet [Re: ]
saltire Offline
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Registered: 05/09/13
Posts: 38
Loc: Scotland
Originally Posted By: rivercanoeist

Hi John, thanks for your feedback. I am sorry to hear of what AS has done to you, it has given me a monstrous wake-up call- AS does not burn out and miraculously disappear- it needs to be treated or it will get the better of you.

Regarding the NSAID issue, as a new AS sufferer, I am caught between Joel Godin's low starch diet (which, for someone active is tough because I need carbs to perform in the pool etc) and NSAIDs.

I copied this from the website of the brand of NSAID that I am using:

"Traditional NSAIDs, such as ibuprofen or diclofenac, block the action of both COX-1 and COX-2, and this is why they can sometimes cause side effects such as stomach irritation and peptic ulcers. Etoricoxib belongs to a new generation of NSAIDs that selectively block the action of COX-2. This means that it stops the production of inflammatory prostaglandins, without stopping the production of prostaglandins that protect the stomach and intestines. It therefore reduces pain and inflammation, but is less likely than traditional NSAIDs to cause side effects on the stomach and intestines (although such side effects are still possible).

This medicine can be taken with or without food, but may start to work quicker if taken without food."

2 things: 1stly, what do you think about the promise of cox 2 being blocked? and avoiding the severe damage like you have experienced? granted that your damage was caused by NSAIDs, I am assuming that these are the traditional ones referred to, this may be naivety on my part, but it could just be that arcoxia (with Etoricoxib as the chief ingredient)- may avoid what you went through. I have been on arcoxia for 2 years on and off now, and have considered going for blood tests that could reveal organ damage (apparently they can do this sort of thing- incredible)- if not for piece of mind, it could be the kind of thing that makes my life with AS more bearable.

Secondly, the company (still referring to the quote),is so cocky about the fact that the stomach isnt damaged that they are willing to say "This medicine can be taken with or without food, but may start to work quicker if taken without food."

anyone with half a brain cell knows that you dont take medication on an empty stomach- this is asking for trouble- this kind of statement concerns me because ppl may actually adhere to this advice and get long-term damage because of it. The cockiness of this comment makes me wonder if they aren't trying to hard to show that the stomach isnt damaged.Like they have something to prove because of criticism about long-term use.

but seriously, what options do I have? The diet is incredibly difficult to start, let alone stick to- everything has starch in it- most vegetables will become starchy when cooked, one is reduced to becoming a mixture btw a rabbit and a carnivore- I would love to know what health implications apply to depriving the body of starches in general and to consuming higher quantities of meat (obviously not as bad as AS, but still a factor to be considered)

I look forward to hearing what you have to say,

regards,

Stuart


no no no AS can and does go into remission all by itself sometimes WITHOUT the so called wonder diets.....mine went into remission for a whole ten years and diet played no part whatsoever.i am so sick of the hard sell

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#260260 - 11/03/13 05:53 AM Re: Sticky wanted on Diet [Re: saltire]
southafrican Offline
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Registered: 11/03/13
Posts: 12

"no no no AS can and does go into remission all by itself sometimes WITHOUT the so called wonder diets.....mine went into remission for a whole ten years and diet played no part whatsoever.i am so sick of the hard sell"

Saltire.....thanks for the response to my post...how old were you when you went into remission? and have you had a relapse?

many thanks,

the Southafrican

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#263917 - 01/28/14 01:07 PM Re: article on AS and diet therapy [Re: Tacitus]
RAHMBA Offline
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Registered: 06/27/12
Posts: 474
Loc: Los Angeles, CA
Hi Tacitus,

Perhaps I am misinterpreting this. If approx 6% of the population is HLAB27+, and only 1/2% of that same population has AS. Included in that 1/2% are people that have AS and are HLAB27-. Doesn't that mean most of the people that are HLAB27+ do not have AS?

How do you understand this?
Thanks!


Edited by RAHMBA (01/28/14 01:08 PM)
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#263945 - 01/29/14 11:41 AM Re: article on AS and diet therapy [Re: RAHMBA]
Tacitus Online
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Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hi, RAHMBA:

Not certain the crux of the question, but I will try to answer it as I interpret this.

IF 6% (world population?) are HLA B27+, and some percentage of these develop severe AS...but for arguments sake let's say 50% develop clinical AS: We have pre-filtered the population: B27+/AS+ only.

The assessment for B27-/AS+ individuals is separate and will add to the overall AS population, but not affect the original sample. I don't know how, for instance, knowing the ultimate population of AS patients, it would break down, but I think about 8% would be B27-/AS+

It is kind of splitting hairs because AS is a disease which is difficult to diagnose, especially in the early stages, and its prevalence within the overall population is not easily estimated because of myriad misdiagnoses--especially fibromyalgia for women and "growing pains" or injury-related "referred{" pains in young men.

From the data Professor Ebringer has provided, about 25% of persons with AS develop clinical symptoms of the disease (lower for non-"AS already" family roots and higher for disease already appeared within blood relatives).

In his experience at the AS Middlesex Clinic over nearly 20 years 50% of patients who were B27-/AS+ actually retested B27+; the cheaper 'serological' method is flawed and produced many false negatives. To avoid obfuscation, Ebringer et al did not do their studies on B27-/AS+ subjects, because the B27 architecture was well-documented and molecular mimicry explained that mechanism adequately. I am certain that B60, B39, others even B51 (Behcet's Disease) all have the same hexamer sequence--exposed--just as in the B27 Osp, but these are relatively rare compared with B27.

SIMPLE ANSWER: I believe that Your final statement is correct--that "most" people with B27 do not develop AS, but 50% of them will at some time during their adult years seek medical assistance for severe backache, compared with 5% from non-B27 groups.

When I last saw Professor Ebringer, I told him I have become the "other twin"--the one without AS!

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#263980 - 01/31/14 10:45 AM Re: article on AS and diet therapy [Re: Chris Miller]
RAHMBA Offline
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Registered: 06/27/12
Posts: 474
Loc: Los Angeles, CA
Thanks Tacitus, Thank you for your thoughts. I wouldn't go as far as you, but I get where you are coming from. I think the differences between the USA and the UK population may explain some of this. Congratulations on being the 'non AS twin'! I have the pleasure of meeting Dr. Ebringer at the ACR conference. We certainly have some very dedicated researchers & rheumatologists working on AS. I just wish there were more of them and there was more funding.
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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#264480 - 02/24/14 09:31 PM Re: article on AS and diet therapy [Re: Chris Miller]
SamW Offline
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Registered: 02/22/14
Posts: 5
Loc: Los Angeles
Hi All, New to this site and forum. I wish I could have found this site long time ago or at least the internet was much more popular 30 years ago. But my spondylitis has done it’s damage and it’s still not letting off any steam till this point.
A little history of myself. My name is Sam, I have ankylosing spondylitis for almost 30 years now. The pain started when I was 12 years old, as far as I remember. It started suddenly and the pain was pretty extreme. Within a few weeks, I have so much pain, I was unable to walk. That’s when I started to see doctors at children’s hospital. I was diagnose with juvenile arthritis and was treated with pain killers and vioxx. Over the next few years, the pain has been on and off as it progress. At this point, doctors has diagnose with rheumatoid arthritis. At this point, the doctors had giving me more medication, Pain Killers, NSAID (some already been taking off the market, due to extreme side effects), and steroid and even try Asian herbal medicine and acupunctures. Medications has done some of it’s job to allow me to move on without much pain, but it’s only a cover up. It really does not cure the problem. As my problem progress, the medication started be less and less effective. Finally at about 20, my doctors finally said it was ankylosing spondylitis.
At the age of 23 years old, I was no longer able to walk. In 1995 and 1996, I already have both of my hips replaced. My doctors had gone through everything with me, know I was so young, going through both 2 major surgery like that it’s very unheard of and I it’s unreverseble, but I did get the best surgeon that did the replacement for me. As a matter of fact, I was the youngest person he operated. Also I was the first person he used the new titanium hip for my replacement. My surgeon posted my hip in a medical magazine article. Doing my second surgery, I had complications and blood pressure has been getting extremely low. The hospital had to pump 4 bags of blood in me to pull me out of the danger.
After my surgery, I felt like I have new legs, they work so great, I was able to walk again, go places I wanted to go. Felt so great. Thou my hips are fixed, but the AS disease continues to eat me up. Currently my whole spine has been fused from my neck down to the last bone in my spine. All my orthopedic can do was to play around with my medications. Over the years, I have tried pretty much all the medications out there and more. NSAID did work for a certain amount of time, than I started to bleed in my stomach if I take too much. Steroids didn’t really do much. Than move on the Biologicals. First started with Enbrel, didn’t really do much. Than switch over to Remicade, had to pushed up to the max allow for my weight before it has any effect. Remicade was doing really well for about 5 years, than I had an insurance issue and had to go off it for about 4-5 months. But when I finally got insurance again, went back to remicade, it didn’t have the same effect, and after the 3 dose, I develop an allergic reactions. I was unable to breathe doing my infusion. My doctor had to took me off of it right away. Next he try Orancia, had 4 infusions and didn’t really have much effect. Next try Humira, Humira works right away, I can feel the med working in my body, but I had a short blackout from it. So had to stop that too. Currently I am only on Celebrex, taking the least dosage as possible, because if I take more, my stomach starts to act up again and bleed as well as my colons. Now my Doctor wants to try a new mec call Cimzia, but I have yet to start, because I cannot afford it, even with insurance, I still have to come up with a few hundred.
This is not the last I heard from my AS. Over the last 7-8 years, I had develop my anxiety and panic disorder, which has sent me to the hospital many times thinking I was going to die from a heart attack, because it gave me all kinds of chest pressure and many more symptoms. I had been through so many more other test of the heart and follow closely by a cardiologist; all the test came back negative. Thank god. But the anxiety disorder has taking the rest of my happy life that was left over by my AS problem. Since my Anxiety kick in years ago. I also had develop a major sensitivity against medications. Now every time a doctor give me a new med, it scares the heck out of me. Maybe that is what happen with Humira that gave me a blackout. It’s really weird. Ever since the Anxiety, even the slightest dose and the same meds I had been taken before will cause issues. Even Celebrex, which I had been on and off for many years. Sometimes the smallest dose would give me some sored of weird pressure like sensation in my chest, but sometimes I have no issues at all. I can’t figure out why is that and neither my doctors.
For the last few years, all my chest pressure, short of breath, etc. was completely blamed on my Anxiety, cause all my heart test came back negative, until recently there’s been more problems than usual, so I had a very long talk with a few of my doctors, specially my cardiologist, psychologist and my rheumatologist whom all agreed there are some problem with my chest. They all agreed that the anxiety is a problem, but there is an underlying problem that is bringing on the anxiety rather than just the anxiety that is causing the chest discomfort. Recently just had a lung CT and a breathing test. As for the result, My spondylitis has cause my lung to shrink due to limited expansion of the chest and ribcage. Currently I only have 58% capacity in my lung due to my AS.
Sorry for the long story, but I see this is an old post and it’s still going on for a few years with many interesting things. I just started to realize and found that some diet can slow down my AS progression and some food such as sugar can cause my AS to flair much faster. All these times since I was young, I had never knew why sometimes my days are better and sometimes the days are extremely bad. Especially when the medication are working, it does not matter what I eat, I do not feel the pain as painful because the medication just covers it up, until the last couple of years when the biologicals are not really working. I realize if I pop a soda that day, I would have a really tough time getting through without popping another pill. Just recently I started to experiment with changing my diet to low starch and low carb. I do realize that my pain is not as aggressive with the low starch. As for Carb, I’m not sure that’s plays a roll, but most of the starchy foods are also very in carbohydrate as well. Thou I still have pain and stiffness, but if I can cut my medication down, it’s already beneficial to me. If anyone else has any diet suggestions, please share it with me. I’m just about to hit the end of the road already with my AS.
_________________________
40 with AS, total Spine fusion, Both Hips replaced at age 24-25 years old and a Right shoulder replaced in Jan. 2013. Also with multiple Health issues, Anxiety and Panic Disorder, High Blood Pressure, and very sensitive to Medications.

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#264483 - 02/24/14 09:49 PM Re: article on AS and diet therapy [Re: Chris Miller]
SamW Offline
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Registered: 02/22/14
Posts: 5
Loc: Los Angeles
Sorry, I also forgot to add. I also had a right shoulder replaced in early 2013 and my left shoulder is also not functioning too well.

Also, being an Asian, cutting starch and carb is specially hard, because mostly all of our food group are consist of some kind of starch and carb. so frustrating.
_________________________
40 with AS, total Spine fusion, Both Hips replaced at age 24-25 years old and a Right shoulder replaced in Jan. 2013. Also with multiple Health issues, Anxiety and Panic Disorder, High Blood Pressure, and very sensitive to Medications.

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#264494 - 02/25/14 10:13 AM Re: article on AS and diet therapy [Re: SamW]
Tacitus Online
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Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hello, SamW:

Quote:
. If anyone else has any diet suggestions, please share it with me. I’m just about to hit the end of the road already with my AS.


The best source of recipes is Carol Sinclair's "The New IBS Low-Starch Diet," with foreword by Professor Alan Ebringer that describes his opinion of the mechanism for AS which has been reduced to practicable employment.

Every culture has the same opposition to going starch-free: Italians and their pasta, Irish with their potatoes, but Indians are the worst: Vegetarians by religion and primary tendencies.

For those of us who have had AS for so many years duration, I am certain that diet is not enough, but a proper AP should be undertaken and finding a cooperative physician, perhaps recommended by the Road Back Foundation, can be very helpful.

The link in my signature to the dropbox page "AS Resources" also has, by way of example, my own AP (Antibiotic Protocol) to use as a guideline in designing Your own, if that is what You are interested.

I experienced the shoulder bursitis and inability to walk, and almost begged for a hip replacement, but the old doctor just advised against that and told me to get well on my own--many years later, I did just that. And I hope You are able to avoid much more--I finally had to have an extensive osteotomy and earlier, Harrington rods and hope I don't have more surgeries in future (the recent broken leg might be another part of AS bone-wasting issue), but today my AS activity is very close to zero and ESR is between 1 and 9 whereas it was >100 BD (Before Diet).

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#264565 - 03/01/14 02:02 AM Re: article on AS and diet therapy [Re: Chris Miller]
SamW Offline
Registered Visitor

Registered: 02/22/14
Posts: 5
Loc: Los Angeles
Thank you John for the information. I understand just the diet is not going to fix or control my AS, but if I can get some relief from it, that certainly beats taking more meds or more surgery down the line.
My damages had been done and surgeries had been performed many years ago. I just want to see if I can cut the medication down to the minimal simply because of the side effects.
I have to agreed with you on every culture has the same opposition. It's really not easy to go starch freend I really don't think I can either, but to cut it down is a benefit already.
It's sad that I will have to under go another 2 major surgery to replace the replacement hip, because they only last for 15-20 years.
I'm also taking a trip over sea to search for other alternative next week. We'll see how that's going to turn out.
Thanks again, I will look up the diet link.

Sam
_________________________
40 with AS, total Spine fusion, Both Hips replaced at age 24-25 years old and a Right shoulder replaced in Jan. 2013. Also with multiple Health issues, Anxiety and Panic Disorder, High Blood Pressure, and very sensitive to Medications.

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#266331 - 05/13/14 08:48 AM Re: article on AS and diet therapy [Re: Chris Miller]
TomLandry Offline
Registered Visitor

Registered: 05/08/14
Posts: 5
I have just recently been diagnosed with AS, although it still needs to be confirmed by MRI in two weeks. My symptoms right now are moderate lumbar pain and stiffness and I just had a bout of iritis.

After reading this thread I think it is worth while to start the LSD and will do so ASAP. My question is since the rheumy wants to start me on humeira in two weeks should I take the humeira? In other words I would love to control it by diet but should I be concerned with missing a window of opportunity by not starting humeira right away? My understanding is it actually slows progression of the disease.

I do not take NSAIDs and have had no gut issues to date.

Thank you for any responses!!!

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#266354 - 05/14/14 08:18 AM Re: article on AS and diet therapy [Re: TomLandry]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hi, TomLandry:

Diet is an adjunct to be employed along with conventional therapy but especially the LSD was intended as a long-term solution when used with enteric-coated sulfasalazine or other drugs besides NSAIDs; Humira would be wonderful.

In a scientific study, it is important to not change more than one thing at a time, but we are not doing some classroom statistical project where we can do SPC (Process Control), but there is only one sample--and we should throw anything and everything at AS; treat this as aggressively as possible.

So Good Luck with diet and the tnf-a drug; I am certain that, together, they will be synergistic as was proven myriad times at the Middlesex AS Clinic by Ebringer, et al.

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#274858 - 06/04/16 03:47 AM Re: article on AS and diet therapy [Re: ]
Shippingnews Offline
Registered Visitor

Registered: 10/11/15
Posts: 332
Originally Posted By: Serafin
33 years old, white male currently suffering from A.S. for nine years. I had to give up working last year. For about a year afterwards, my stress level decreased significantly that lead to a decrease in pain. Additionally, since Feb 2014, with guidance from my primary care physician, I have been on a low-carb, low-fat, high protein diet and I've lost about 50 lbs doing it. I no longer consumer soda, refined sugar and anything that has flour in it. I put myself through agonizing gym/swimming exercise 3-5 days a week. I've tried every medication except the TNF inhibitors ... I'm currently looking into it because even with the decreased weight on the joints, the exercise, the new diet, I still feel pain when standing/walking/sitting/laying (sleeping). Everything I've changed has helped but it doesn't solve the problem.

Medical conditions that were resolved or lessened due to my changes were Depression better managed, Sleep Apnea lessened, Acid Reflux resolved, High Blood pressure resolved, no longer Pre-Diabetic.


Hi Serafin,

Sounds promising. What was your ESR/CRP before and after your diet?

Thanks
_________________________
Male, early 30s. AS diagnosed Sep 2015. HLAB27+
Current medicines: Omeprazole, Vit D3, Celecoxib(1 tab)/Zorvolex(2 tabs)(alternatimg between these two every week), Pyridoxine, Isoniazid, MTX(3 tab) every wednesday, on humira every two weeks since Dec 2015, Weekly Humira since June 18th 2016

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#275045 - 06/20/16 07:39 PM Re: Sticky wanted on Diet [Re: Chris Miller]
nealhoffman Offline
Registered Visitor

Registered: 01/22/15
Posts: 2
For those already finding success with LSD, and exercise as a positive way of controlling AS, I have found that the addition of a Curcamin supplement is an easy addition, that completes the treatment. There are a number of companies that produce this Turmeric based concentrate. I have found the Brand name Curamin by Terry Naturally to have the best formula.
Some companies do not make as pure or potent a formula, and seem to charge less. But the cost equals out in the need to ingest several capsules instead of one 750mg capsule.
Standing straight for four years after twenty, of pain, stiffness, and medication that almost killed me.
Neal H

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#275371 - 07/15/16 05:30 PM Re: Sticky wanted on Diet [Re: Chris Miller]
maryshell Offline
Registered Visitor

Registered: 07/13/16
Posts: 6
Is here anyone who is a vegetarian and trying LSD? I have to eliminate meats and mild products due to another medical issues and I'd like to go on LSD, but now sure how it's going to look. ((

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#275388 - 07/17/16 09:19 AM Re: Sticky wanted on Diet [Re: maryshell]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hello, maryshell:

When I started NSD, I tried to remain vegetarian but after speaking with Professor Ebringer I resolved to resume eating meats after 22 years! It was a difficult transition, but vegetarian/vegan is not compatible with AS!

Now that I have no active disease, but developed gout (perhaps due to long-term AS-related kidney issues), I have become vegetarian once again. The foods I like are mostly vegetables, properly prepared with a little hard cheese sometimes. Tofu is good, nuts (except obvious ones like legume peanuts and especially cashews), halvah, coconut, raisins, properly tested fruits, etc. There are many options, but it is difficult even still to find the variety we need.

I have been working on a protocol--some suggestions--for AS guys in India--which is worst-case as far as diet is concerned.

HEALTH,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#275403 - 07/18/16 03:23 PM Re: Sticky wanted on Diet [Re: Chris Miller]
maryshell Offline
Registered Visitor

Registered: 07/13/16
Posts: 6
:-( It will be a difficult decision for me. I guess I hoped for a miraculous way, but I understand it doesn't exist.

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#275433 - 07/23/16 03:37 AM Re: Sticky wanted on Diet [Re: Chris Miller]
Jessie10 Offline
Registered Visitor

Registered: 06/09/16
Posts: 56
Maryshell, I hoped for that too when I was first diagnosed. I kept waiting for it to disappear! I will say changing my diet has helped a great deal in combination with the right medicications!
_________________________
26 y/o female. HLA-B27 negative. Dxd AS 4/2016
Enbrel, naproxen

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