Positive EMA, weak positive TTG, negative biopsy?

[Hartelively]

Hi all,

I got my endoscopy/biopsy results this morning and they were negative, but in April I tested positive for the EMA and weak positive for TTG. I’m not total IgA deficient but was on the low end of the normal range for that. I went mostly gluten free (still had contaminated food and ate from restaurants though) as per my GI’s recommendation for five months and then did the blood work again: EMA and TTG were totally negative then. I then did a six week gluten challenge eating tons of gluten every day and got my biopsy last week.

My GI took three biopsies which were all negative.

I talked to him on the phone today to ask for clarification and he said he thinks the one positive EMA test was a lab error since I showed absolutely zero signs of celiac in the biopsies and all the contamination I got in my “gluten free” period would have created TTG elevation in my second blood test. He thinks I should be gluten-free but do NOT have celiac.

I later messaged the office asking to have the EMA test again ASAP while I’ve still been eating gluten. I’m so confused because I thought having a positive EMA at all was basically a 100% guarantee of celiac. Is it possible for the lab to just incorrectly report it? Should I get a new doctor if he refuses the new EMA test request?

Thank you 

[Scott Adams]

To me it sounds like you are in the non-celiac gluten sensitive category, which may make up to ~10% of the population. The good news is that you don't have gut damage, but the bad news is that it means that you should still be 100% gluten-free, as some believe that it can develop into full blown celiac disease at some point.