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SandraLAVixen

Any Other Tests I Can Do Besides These?

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I've exhausted every test my doctors can think of for Celiac's, so far I've had the following done:

Celiac complete panel (blood, genetic and antibody), NEGATIVE.

Endoscopy and biopsy, both NEGATIVE (saw the video myself).

Pillcam, NEGATIVE for just about everything.

Celiac stool antibody test, NEGATIVE.

I still have insane thrashing pain 1-2 hours after eating any amount of bread lasting 4-8 hours (once lasting 48 hours).

Drs say that I'm not in the genetic susceptibility range (native Siberian) and I've always eaten moderate to large amounts of breads/pastas my whole life. A few drs claim that Celiac's usually does not cause this much pain.

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I've exhausted every test my doctors can think of for Celiac's, so far I've had the following done:

Celiac complete panel (blood, genetic and antibody), NEGATIVE.

Endoscopy and biopsy, both NEGATIVE (saw the video myself).

Pillcam, NEGATIVE for just about everything.

Celiac stool antibody test, NEGATIVE.

I still have insane thrashing pain 1-2 hours after eating any amount of bread lasting 4-8 hours (once lasting 48 hours).

Drs say that I'm not in the genetic susceptibility range (native Siberian) and I've always eaten moderate to large amounts of breads/pastas my whole life. A few drs claim that Celiac's usually does not cause this much pain.

Have you had your gallbladder tested?

Could you be reacting to whatever you're putting on your bread? Dairy, peanut butter, soy or MSG in deli meats?

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All celiac tests are usually negative with non-celiac gluten intolerance, and it is not limited to people with DQ2 or DQ8. With the intolerance, symptoms can be quite extreme too. I'd suggest going gluten-free, particularly since bread is causing you such pain.

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Have you had your gallbladder tested?

Could you be reacting to whatever you're putting on your bread? Dairy, peanut butter, soy or MSG in deli meats?

Bili was normal, also ultrasound of liver and gallbladder was spotless (NEGATIVE).

I only eat plain bread/pasta, and it still hurt insanely bad. the ONLY cereal I can eat is mini-wheats, I just put it in milk. White rice is plain.

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I echo Skylark's post. Non-celiac gluten intolerance is a very real condition, with symptoms which can be as bad as or worse than celiac disease. The only difference is that you do not pass the tests, the problem with gluten is not an autoimmune reaction in the small intestine. Researchers are still trying to determine the mechanism, but it is very real and just as disabling. The medical profession is rather slow to catch up with this, having told their patients for years that if it is not celiac it is okay to eat gluten.

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I echo Skylark's post. Non-celiac gluten intolerance is a very real condition, with symptoms which can be as bad as or worse than celiac disease.

If it exists, is there only one type? where can I learn more about it because even searching online there is only mention of Celiac-caused bread pain.

I am trying to avoid gluten, but avoiding or not avoiding it does not seem to make much of a difference. It only hurts when I eat breads/pasta and the rest of the time I'm starving as if the other "safe" foods are not giving me any energy.

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Read this. http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html

Have you gone truly gluten-free? It can take weeks to months for your system to recover and it requires a proper gluten-free diet with no cheating. Not only avoiding breads, mini-wheats, and whatnot, but all forms of gluten including wheat in soy sauce, thickeners in soups, sauces, and stews, processed foods with wheat-derived additives, and even making sure your food is not cross-contaminated in a crumb-filled toaster or on a dirty cutting board.

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