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sfm

So Does This Mean I Am Celiac After All....?

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So I've been gluten free since November 2006, but since neither my house nor my office is not gluten free, I have had occasional 'second hand glutenings'.

Recently I switched GIs, and he wanted to have an upper endoscopy and a colonoscopy done, to rule out any other conditions, and biopsy the small intestine (despite the fact that I've been gluten free). I agreed, as I was still getting sick, and thought it was prudent to check other things as well.

So I had both tests, and the first thing he discovered were two ulcers in my stomach, which he feels are related to excessive ibuprophen consumption (for migraines). So no more advil for me!

When the biopsy came back, there was inflammation in the small intestine, but he did not find clear evidence of sprue. Which to me sounds like I have some residual inflammation, but am doing a decent job of healing. Am I reaching, or does that sound about right? Or is the inflammation also from the advil?

My GI didn't seem to feel it is from the gluten, but it seems like it could be related. I'm just interested in feedback, I guess - I know I'm gluten intolerant whether I am a true celiac or not, so it's more a point of curiosity with me.

Sheryll

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My first question is why did you go gluten-free in the first place? Were you diagnosed then as having celiac disease/gluten intolerance? Are you having symptoms with these second hand glutenings?

My GI has told me he will do a recheck if the bloodtests to see if my numbers come down to make sure I am relatively gluten-free. I can't say where your inflammation somes from but if you have been rmostly gluten-free for almost a year you should not have signs of celiac disease on your biopsies.

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My first question is why did you go gluten-free in the first place? Were you diagnosed then as having celiac disease/gluten intolerance? Are you having symptoms with these second hand glutenings?

My GI has told me he will do a recheck if the bloodtests to see if my numbers come down to make sure I am relatively gluten-free. I can't say where your inflammation somes from but if you have been rmostly gluten-free for almost a year you should not have signs of celiac disease on your biopsies.

Sara,

No, I went gluten free as an experiment, after my daughter was tested, and the symptoms the pediatrician described fit me to a tee. I had no tests until I had been gluten free for four months. My blood tests were negative, but Enterolab still showed elevated levels for both the antigliadin IgA and the transglutaminase IgA.

My former GI never tested for celiac, only for reflux, which is why I switched GIs in the first place. It was my PCP who ran blood tests at my request. So this is my first small bowel biopsy. It is entirely possible, with how sick I was before going gluten free, that a small bowel biopsy at that time would have showed damage to the villi. I have no way of knowing since I refused to go back on gluten for testing; it wouldn't be worth it to me. I have never needed a diagnosis to know.

My reason for seeing a new GI was that I was still sick on and off; I thought maybe there was something else going on. It may be that I was just impatient, as I've heard people say that it took them up to a year or more to get over the occasional reoccurence of symptoms. Recently I've eliminated tree nuts, as I have tested positive for an allergy to walnuts and macadamias, which seemed to manifest as digestive symptoms first. And lately I feel pretty great, actually, so it is possible that the nuts were the issue.

The knowledge that I cannot tolerate gluten comes from my dietary response, both the improvement in my health since eliminating gluten, and my violent reaction when I do accidentally ingest gluten.

Sheryll

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