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Joined: Jul 2011
Posts: 26
Hanna Offline OP
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Yes I think gluten is my problem, but I am not coeliac. I have not tested for sensitivity, because I do not want to eat gluten again. The tests are also unreliable I've heard. And I've read that whenever you eat gluten, the antibodies (that I suspect attack my tendons and joints) stay in the bloodstream for up to 6 months.

Some articles states that as much as 80% (of the US population) does not tolarate gluten, but it is difficult to trace symptoms to gluten because they come so slowly (unless you have coeliac).

I still eat a low-starch / low-carb paleo diet, but since the last time I was here, I have eaten glutenfree bread, potato etc with no reaction. I am planning to exclude dairy products as well.

Some references:
http://chriskresser.com/the-gluten-thyroid-connection

http://www.ncbi.nlm.nih.gov/pubmed/22082016

http://www.glutenfreesociety.org/gluten-...uten-free-diet/

And this book: http://www.amazon.com/Dangerous-Grains-Gluten-Cereal-Hazardous/dp/1583331298

Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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i tested negative for gluten / celiac in the following ways:

1. duodenum biopsy when they were scoping me for my gastritis

2. food sensitivity blood work testing (tested very positive for casein and mildly positive for egg (probably protein as well i'm guessing).

3. HLA genes

4. antibodies

and i don't seem to have any (at least really obvious) affects to gluten.

however, with all of that said, (some of) my doctors say you can test negative and still have a sensitivity.

but i was also told by my gastroenterologist that the combination of the antibodies and HLA genes he tested for have been shown to give a 99% accuracy rate.

so if you really wanted to be tested properly, you could find a good doctor, up on the latest research, and have the proper testing done.

however, i'm always of the mind that real life data is the most important thing. if something bothers me, i don't worry about why, whether it should, etc, i just know it does, and avoid it.

a food - symptom diary told me the things that bothered my stomach. the worst was dairy. i always thought it was the calcium causing the stomach to produce more acid. now i think it must have been the casein causing the inflammation.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Apr 2002
Posts: 2,485
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Thanks Molly & Sue, I am quite curious about LDN smile

>> Zark - where ya been ?

I don't know why I haven't been on kickas more. Busy working I suppose!. Have stayed on the diet as a matter of necessity for years now. But there is always more to learn smile


what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)
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Am I in remission???

I started with half a spoon full of glutinous rice (black sticky rice desert with coconut cream on top at a thai restaurant). No reaction. I tried several spoonfuls a few days later, still no reaction. I had a whole bowl full yesterday, still nothing.

Right now I am wondering whether I am in remission, or if the glutinous rice could really be this safe..?
It is likely I am in remission as I have been eating out a lot with friends and haven't had a bad reaction for about a month. Eating out is usually a game of russian roulette for me (even though I try to be careful).

Time to visit starch-ville and give it a real test.

If I am in remission then perhaps the following changes may have caused it:

* started taking "soil based organisms" (Swanson brand) - a variant of probiotics. I mix it in with yoghurt, honey, half or quarter tsp of inulin, 2 tsp of fiber supplement (XFG : xylo oligosaccharides, fructo oligosaccharides, galacto oligosaccharides)

* started Tai Chi lessons

* cut out red meat - may have a sensitivity?


what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)
Joined: Jan 2004
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Very_Addicted_to_AS_Kickin
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Cutting out the red meat will have helped that's for certain. And then all the rest of what you are doing helps matters along. Good news - Go well


MollyC1i - Riding OutAS
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When I first went gluten free I was joint pain free for about a year, but it gradually came back, and now I need to do minimal starch. Carol Sinclair reports the same experience in her book, I believe she was okay for 2 years after going gluten free.

I am convinced that gluten has a role in some cases of AS, maybe gut damage contributes to the problem, or maybe gluten intolerance increases inflammation and so worsens symptoms, or maybe something else. I thought I was cured when I went off gluten, I was devastated when all my symptoms began to recur.

The thing I always try to keep in mind is that this disease is effectively like an living organism, since it is the Klebs causing the problem. I ate starch every now and then for a while and thought I was fine with that, but after a while my symptoms began to increase and then I had to endure a few weeks of being back to the awful deep bone aches while I starved the Klebs back down. Not fun.

Also, as others have mentioned, there is the issue of how well the starch is digested. Maybe you digest rice well, so undigested starch isn't making it to your gut in as large an amount as when you eat wheat, for example.

In my case I react very clearly to starch. I have not been diagnosed, in fact I tried a low carb paleo diet and went into remission, after experimenting I found starch was the culprit, and when I posted asking how on earth starch could be the cause of my joint pain, someone told me about AS and suddenly my life story made sense!

I am interested about taking OS, as I thought that was to be avoided? It is very hard to find probiotics without FOS.


Symptomatic since 1996
Gluten free since 2008
Paleo since 2010
NSD since 2011
Joined: Apr 2002
Posts: 2,485
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>> Maybe you digest rice well

Perhaps, perhaps smile

I normally react to starchy bananas & rice even though they are an easier to digest starch from my experience - evidence from the fact that the reaction is smaller /doesn't last as long.

Had 2 starchy unripe bananas and no reaction. So yeah I seem to be in remission. At least somewhat.

I tried an indian curry sauce last night that appears to have been starchy - it was very tasty smile (I didn't test with iodine as it had tomato puree in the sauce and thus would have reacted regardless). Became pretty sore and stiff.. slipped into a "food coma" (very tired & fell asleep, not a real coma hehe). By morning the stiffness was gone and I felt fine!. Well, most starches would take me 3 or 4 days to recover properly from.

So yep, kinda in remission.

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Originally Posted By: DragonSlayer
Hi, Hanna:

At this stage of my healing (14 years into NSD+antibiotics), no starches affect me anymore ....



So you are in remission, with or without the starch diet ?


Age 56. Psoriatic spondylitis. HLA B27 negative. MRI negative.
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Hi sue22,

Have you had the blood test transglutaminase ?

See link below

transglutaminase test for celiac


Age 56. Psoriatic spondylitis. HLA B27 negative. MRI negative.
Joined: Apr 2002
Posts: 2,485
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Had another (half) bowl of black sticky rice pudding last night. Feeling fine today smile

I am wondering if these "Soil Based Organism" probiotics I am taking are making me less sensitive. I believe they are the most likely reason I am not reacting lately.


what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)
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