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Misinformation from GI?


Sanders

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Sanders Rookie

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

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.

nora-n Rookie

The EMA is only positive with celiac

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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