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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 patientís 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 patientís ESR level demonstrated the success of the diet.

"Other studies have failed to duplicate the results of Ebringerís 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 patientís 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 patientís ESR level demonstrated the success of the diet.

"Other studies have failed to duplicate the results of Ebringerís 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 Ebringerís 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 patientís 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 patientís ESR level demonstrated the success of the diet.

"Other studies have failed to duplicate the results of Ebringerís 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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