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#275403 - 07/18/16 10:23 PM Re: Sticky wanted on Diet [Re: ]  
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maryshell Offline
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:-( It will be a difficult decision for me. I guess I hoped for a miraculous way, but I understand it doesn't exist.

#275433 - 07/23/16 10:37 AM Re: Sticky wanted on Diet [Re: ]  
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Jessie10 Offline
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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
#278639 - 07/26/17 01:40 AM Re: Sticky wanted on Diet [Re: Anonymous]  
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scubagirl Offline
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Skimmed through some of the posts here and there's a lot of discussion about studies on diet's effect on AS/autoimmune diseases, but has anyone had luck (or not) with any sort of restrictive diet? I've done a lot of internet research, and many alternative practitioners claiming they cure their patients with specific types of diets ("cure" raises lots of red flags for me), but I have heard a lot fewer anecdotes about the sufferers themselves actually having success with dietary changes.

Last year, before my diagnosis, I tried the "autoimmune paleo" diet, which I had no luck with. I couldn't get past the super low starch aspect of the diet - it made me feel worse (plus, I loathe squash and sweet potatoes, which were pretty much the only allowed carbs), and added in white rice after 15 days so that I could have enough energy to get through the day. After a couple of months, I tried slowly (total diet lasted over 6 months) introducing foods one "group" (or potential allergen) at a time, and noticed that highly processed wheat gives me anxiety. Otherwise, I noticed no differences to my symptoms. I have stuck with a lower sugar diet (as in, very few added sugars), mostly because I know I don't need it. I also have reduced my wheat/bread intake, and continued eating meat, since before, I was semi-vegetarian and only rarely (avg. of maybe 1x/month) ate meat. The increased protein helps my energy levels a bit.

So, how did those of you with food issues identify the problem foods? How long did it take before you noticed a difference? Has anyone tried diet(s) and failed to identify dietary connections to their flares?

#278645 - 07/26/17 04:26 PM Re: Sticky wanted on Diet [Re: scubagirl]  
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Tacitus Offline
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Reno/San Fernando LU PI

Hello, scubagirl:

The transition from carb-burner to protein and fat-burner takes several months and true there are times our energy is unacceptably low. But the long-term benefits are worth the efforts. I have never seen anyone use the word "cure." These Success Stories are really a minor sampling of how diet affects AS. There is plenty of literature that independently supports dietary control of AS; it is not new and not first discovered by Professor Alan Ebringer et al at Kings College, London.

DIET is not easily subjected to double-blind, multicentric, placebo-controlled experiments that are demanded by the drug-pushing hypocrites (they never meet their own standards). However, on a personal level we can each prove the diet connection to ourselves. I used to control my flares by fasting and did water-only fasts up to 20 days.

Control of my own AS through diet was a very spotty thing at first and I can tell You in no uncertain terms that eating yams and squash will not provide proper results; even condiments and supplements must be tested to confirm their starch-free status.

Because Ebringer et al found that AS is caused by a germ and identified that germ, they were able to do some preliminary small studies related to allowing the patient to control their own microbiome. Their "London AS Diet" was given to all of their AS patients at the Middlesex AS Clinic, London.

Upon learning of this work, I decided to combine extreme starch restriction with antibiotics and I got very lucky and after several cycles of bactericidal agents and bacteriostatic for maintenance, I was able to control my symptoms using diet alone. I found this was not very practical when traveling, so I returned to the combination of Carol Sinclair's (The IBS Low Starch Diet) essentially NO starch diet (NSD) with antibiotics. After about six years of this, I was no longer sensitive to starches, where at one time this was a provable S-R (stimulus-response) phenomenon, measured by ESR that I could get on-demand where I was living in Philippines.

I no longer have such a restricted diet and have not taken antibiotics regularly in almost 10 years.

Regrettably, I did not learn about diet and the germ-cause of AS until after considerable permanent skeletal damage had already been done, but my primary goal was to save my eyesight (iritis) and stop the kidney stones: Diet accomplished both of these.

Professor Ebringer suggested we could "turn the clock back about two years" through diet, but I needed twenty years.

There is no doubt that the practice of the medical guilds will one day catch up to the medical science, but most of us should not wait for our doctors, but take some initiative for ourselves.

Good Luck with whatever You decide.

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

#278653 - 07/27/17 01:38 AM Re: Sticky wanted on Diet [Re: Tacitus]  
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scubagirl Offline
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John,
Thanks for the information. Looking into the London AS diet and related research - quite interesting. The papers by Ebringer indicate that molecular mimicry between Klebsiella pneumoniae and HLA-27B cause (in short) activation or misbehavior of the expression of the gene, but my understanding (which could be wrong) is that this would only trigger issues if the infected person was HLA-27B positive. Do you mind me asking if you're positive or negative (I'm negative)?

Also, when you mention antibiotics, how did you find a doctor that was willing to prescribe them and experiment with you long-term to help you? Doctors these days are very adverse to prescribing antibiotics at the risk of increasing patient's risk of getting superbugs (having had antibiotic-resistant infections before, I do not think this is something I would even try, to be honest, but I'm curious).

Based on my personal experience and research, health issues can have multiple causes (e.g., not everyone's disease process is triggered the same way and thus a treatment may only work for a subset of the population). I wish the modern medicine had a better understanding of the human body and the mechanisms of disease, especially autoimmune. In the meantime, I'll experiment =)

#278660 - 07/27/17 05:07 PM Re: Sticky wanted on Diet [Re: scubagirl]  
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Tacitus Offline
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Reno/San Fernando LU PI


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

#278661 - 07/27/17 05:18 PM Re: Sticky wanted on Diet [Re: scubagirl]  
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Tacitus Offline
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Reno/San Fernando LU PI


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

#279527 - 12/04/17 01:47 AM Re: Sticky wanted on Diet [Re: Anonymous]  
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nealh Offline
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Having AnkylosisSpondylitis for a number of years now, I occasionally drop back to this site to see what's new.
Unfortunately I see the same problems with the same lack of the real help that I have offered on this site previously
After almost being killed by continued use of NSAIDS, I did my own research to find the cause of this autoimmune condition.
Noah Cranman describes Alan Ebringers research, in his book, and gives the answer that has allowed me to be virtually symptom free for 5 years.
Its all about controlling the bacteria in your gut, with a low starch diet, exercise, and supplements. You cannot take enough straight
Turmeric to provide any relief. 750 Mg of A good quality Curcamin (CURAMED by Terry Naturally) is part of my daily regimen.
My health has never been better. Its good for your body, your brain and even your gums.
Stay off the NSAIDS, Stay off the biologics. Go natural. There are many good food alternatives. The Paleo diet is a good basis.
No whining
Neal

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