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Misinformation from GI?

Sanders

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Sanders Rookie
Sanders
Posted

I just got back from my first appointment with the GI, and of course, feel more confused :) Anyone have input on the following?

1) I had blood work done through my primary care doc, and had positive EMA and positive GDP, but negative TTG (which I understand is weird, and my doc today couldn't explain why that would happen, and said the TTG is a better indicator, which I thought wasn't the case). Is TTG the best indicator?

2) He said the endoscopy is the "gold standard", of course, and scheduled me to get one next week. I am fine getting one done, in fact I would like to have 100% confirmation if possible, but he told me that if it's negative, that it means I "haven't developed Celiac yet", which from reading these forums, I know to be possibly inaccurate.

3) I pressed him about more info regarding the positive EMA, and that I have read that that is a pretty solid indicator of Celiac, with a very small margin of error. He still seemed to be of the mindset that it could also indicate just a gluten sensitivity. That isn't correct, right? EMA is specific to Celiac, not to gluten sensitivity? I said "so, with my positive blood work, and a positive response to a gluten elimination diet, if I had a negative biopsy, would that mean I don't have Celiac?" and he basically said it could just mean I'm sensitive to gluten, and they would keep an eye out.

I have made an appointment with another GI, and I'm hoping to get some better answers. I'm just frustrated that answers are so hard to get at this level.

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RMJ Mentor
RMJ
Posted

Some doctors won't give a celiac diagnosis without a positive biopsy, no matter what.  I was high positive on five different blood tests (TTG IgA and IgG, DGP IgA and IgG and EMA).  All values went down to normal or very near normal on a gluten free diet. I could not have a biopsy due to other health problems.  My GI will not give me a celiac diagnosis.

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nora-n Rookie
nora-n
Posted

The EMA is only positive with celiac

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