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MissyMouse

Symptoms Despite Clear Tests

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Hi all,

I have had a history of GI symptoms. I am 40 and my earliest memory of issues was in my early 20s (though I can recall some serious gas pains in my teens).

Almost 2 years ago, my symptoms worsened. I had diarrhea on and off for a couple of months. A series of tests were completed to rule out traveler's diarrhea, etc. All came back clear. Then the diarrhea worsened. I went a full month without a solid BM. After demanding treatment from doctor to no avail, I checked myself in to the ER. I had serious inflammation in my gut as evidenced by CT scan. I was subsequently scoped (endoscopy and colonoscopy) and both came back clear. Following the scopes (and intestinal cleansing), I began a wheat free diet. All of my symptoms ceased immediately. My GI diagnosed me with IBS.

I remained on the wheat free diet (not gluten free) for about 18 months. I had an blood allergy test completed and I was not allergic to wheat.

About 3 months ago, I bought tickets to visit a friend in Italy. I knew that eating here could be problematic. About 2 weeks before my trip I began re-introducing wheat slowly back in to my diet. I cannot describe the pain that followed. Now that I am in Italy and consuming wheat at almost every meal, the pain has stopped but the other symptoms have worsened. I have not had a solid BM in over 10 days.

It seems clear to me what the problem is. My confusion is related to the lack of confirmation through a variety of tests. Why do all of the tests come back clear? Is it possible that the issue lies in my small intestine and cannot be detected on standard tests? should I ask for a pill cam? I have not had the celiac blood tests but I was told by my doc that the endoscopy is more reliable.

I would love to hear feedback.

Suffering in Italy

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Would it be possible to see doctor in Italy? They are very knowledgeable about celiac there. If you want to go back on gluten free it's actually one of the best countries to eat gluten free as well. You just have to ask.

Pauliina

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Yes you could definitely have celiac and it not have been picked up. While you are still eating gluten you could try getting the blood tests (there are 5, referred to elsewhere on this site). Also you mention an endoscopy but not a biopsy. Celiac is often only visible at the microscopic level.

Finally, the testing really only picks it up after there is severe damage. So your dietary response is very significant, especially with the return of illness when you return to gluten.

It is interesting that you cleared totally with just being wheat free, but don't test for a wheat allergy.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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