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Sanders

Misinformation from GI?

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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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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


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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The EMA is only positive with celiac


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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