Tested twice and feel like my doctor has told me wrong

[Scochran]

Tissue Transglutaminase Ab, IgA, 1.2 (Negative) 

IgA 393 mg/dLH High  Abnormal

second test

Endomysial Antibody IgA LCNegative

t-Transglutaminase (tTG) IgA 2

iga 488 abnormal

first test

Comment from doctor from test

 

Your Celiac Screening Test showed a positive IgA, which gives you a 93% likelihood of having Celiac Disease. The treatment for this includes a gluten-free diet. I would suggest discussing this with your primary care provider and consider follow up with Gastroenterology. If you have any questions, please notify the office.  Thank you.

She’s a nurse practitioner endocrinologist and told me I didn’t necessarily need to be eating gluten again after I had stopped for two weeks for second test but don’t avoid it. I felt that wasn’t correct from what I’ve read. Also she told me the total iga for this test is specific for celiac only. From what I’ve read that isn’t correct. She is diagnosing me just from elevated iga? Is this correct. My sister is celiac but her ttg iga is high and total iga. I feel so confused. My sister is definitely celiac and I have so many symptoms I believe could be but not the standard ones. I ache all over, off balance and dizzy, many health problems I feel could be related. Please chime in with your experience.

[trents]

Welcome to the forum, @Scochran!

You have had two antibody tests designed to detect celiac disease:

1. Tissue Transglutaminase Ab, IgA (aka, "tTG-IGA")

2. Endomysial Antibody IgA (aka, "EMA")

The tTG-IGA you have had done twice and it seems to have been negative the first time but there is no negative vs. positive note the second time. We can't tell from the numbers themselves because different labs use different scales. So, unless you include the range for negative vs. positive for the second tTG-IGA test we can't be sure if it was negative or positive. And there is a question as to whether the second tTG-IGA test was accurate because you had already started a gluten free diet.

The EMA was was also negative. This is an older test and not as sensitive as the tTG-IGA. It isn't ordered very often anymore. It is also relatively expensive.

The other test, the IGA, which was high both times, is what we call "total IGA" and is not a test for celiac disease per se. It's value is that if it is low, it can create false negatives in the individual celiac IGA based tests such as the tTG-IGA. Your total IGA is not deficient so that is not a problem in your case. If you are wondering if a high total IGA is a health risk, I am not aware that it is significant in that sense. But yes, you are correct and your nurse practitioner is wrong. Total IGA cannot be used to diagnose celiac disease.

It does not appear from the limited testing that has been done that you have celiac disease but it would have been helpful if an more complete celiac panel had been done and done at a time when you were consuming generous amounts of gluten. A more complete celiac panel would have included DGP-IGG antibody test. So, you might consider a "gluten challenge" and then ask for a more complete celiac panel

If you are convinced that gluten is causing you problems then you may have NCGS (Non Celiac Gluten Sensitivity) instead of celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

Edited September 24, 2024 by trents

[Scott Adams]

It's strange that the Nurse Practitioner might make a mistaken celiac disease diagnosis based on your total IgA, but to be sure you should request that your doctor look at the results and discuss them with you. If you did want to do an endoscopy for celiac disease you would need to keep eating gluten daily until all tests are completed.