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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
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)
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Joined: Apr 2002
Posts: 2,485
Colonel_AS_Kicker
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Colonel_AS_Kicker
Joined: Apr 2002
Posts: 2,485 |
Thanks Molly & Sue, I am quite curious about LDN >> 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
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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Joined: Apr 2002
Posts: 2,485
Colonel_AS_Kicker
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Colonel_AS_Kicker
Joined: Apr 2002
Posts: 2,485 |
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)
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Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
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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Joined: Jul 2011
Posts: 128
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Jul 2011
Posts: 128 |
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
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Joined: Apr 2002
Posts: 2,485
Colonel_AS_Kicker
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Colonel_AS_Kicker
Joined: Apr 2002
Posts: 2,485 |
>> Maybe you digest rice well Perhaps, perhaps 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 (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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Joined: Mar 2012
Posts: 126
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Mar 2012
Posts: 126 |
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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Joined: Mar 2012
Posts: 126
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Mar 2012
Posts: 126 |
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.
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Joined: Apr 2002
Posts: 2,485
Colonel_AS_Kicker
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Colonel_AS_Kicker
Joined: Apr 2002
Posts: 2,485 |
Had another (half) bowl of black sticky rice pudding last night. Feeling fine today 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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