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More Confused Than Ever

alexsami

By alexsami
in Coping with Celiac Disease

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alexsami Contributor
alexsami
Posted

A month ago, i had a celiac blood panel done, having had diarrhea and lots of gas for about 4 weeks. My results were Tissue Transglutaminase, 3<, immunoglobulin A, 223, and Gliadin Antibody (IGA) 16.....everything normal, except gliadin antibody, <11 normal, >17 positive. Nurse called me and said you have celiac disease, remove gluten from your diet. One month ago I did just that. I have an appt. with a GI next week.......after everything I have read...u cant be diagnosed on the one blood test alone.....is it possible I can just be gluten intolerant, and one day I can eat some of these foods again.....?? Please any insight would be greatly appreciated. very confused

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zus888 Contributor
zus888
Posted

Truth? I don't know. And I can't say that anyone truly knows. The tests aren't perfect - no test is. You *could* have celiac and have biopsy results showing absolutely nothing.

My story:

All tests negative except the IgG gliadin, which was just one point above negative. This was done AFTER I had a positive biopsy. And, guess what, I could, technically, not have celiac. There ARE other reasons to have blunted villi: soy or dairy intolerance, crohns, intestinal cancer, lymphoma, and a few other things. I had no symptoms when diagnosed. Nothing besides fatigue, but, really, that hasn't improved much after the diet. And my fatigue isn't really in the realm of abnormal when you consider the fact that I have 3 kids: 7, 4, and 2 years old. So, yes, I have my sights on the possibility that I, in fact, may not have celiac disease.

Statistically speaking, the chances are quite high that it IS celiac. First, I have a number of other autoimmune diseases and they seem to travel in packs. Second, the likelihood of this being something else with both the IgG gliadin and the biopsy coming back as positive is pretty slim. That doesn't mean it's impossible though.

So, the PROBABILITY of you and me having celiac is high, but the true test is going on the diet. I will be vigilant for a year and get retested (both endoscopy and blood). If my results are unchanged, I'll be insisting on other tests to rule out the worst of the possible culprits.

I probably haven't helped you at all. What it boils down to is the science hasn't caught up yet. We're still on the learning curve with celiac and gluten intolerance. What we DO know is that the treatment for both is EXACTLY the same. We also know that both involve the activation of the immune system, with a different pathogenesis. Additionally, BOTH are very serious and are associated with all the other awful symptoms, risks, associated diseases, etc.

Going on the diet is possibly the best test we have now. And, even that isn't perfect because there ARE a select few people out there who are silent celiacs. Though rare, they do exist.

Sorry I can't answer your question.

alexsami Contributor
alexsami
Posted
  • Author

thanks for the response

Skylark Collaborator
Skylark
Posted

A month ago, i had a celiac blood panel done, having had diarrhea and lots of gas for about 4 weeks. My results were Tissue Transglutaminase, 3<, immunoglobulin A, 223, and Gliadin Antibody (IGA) 16.....everything normal, except gliadin antibody, <11 normal, >17 positive. Nurse called me and said you have celiac disease, remove gluten from your diet. One month ago I did just that. I have an appt. with a GI next week.......after everything I have read...u cant be diagnosed on the one blood test alone.....is it possible I can just be gluten intolerant, and one day I can eat some of these foods again.....?? Please any insight would be greatly appreciated. very confused

It sounds to me like you need to go back on gluten and have an endoscopy with a biopsy to sort it out. I suspect your GI will say the same.

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