Confusing test results

[maggiemaay]

Hi! New to this website and concept of potentially having celiac. I've been having gastrointestinal issues, headaches, and some nausea since January. It's been a wild ride but at this point, we're potentially looking at celiac disease. My grandfather and 1st cousin have it as well. I've seen 2 functional drs and will be seeing a gastro soon.

My tTg-IgA came back at a 1.7 (seemingly a negative result).

Did the genetic testing, I did test positive for the DQ2 gene, homozygous. My "risk" is "elevated", at 1:10 (10%).

My cousin is convinced I have celiac and that the tTg-IgA isn't the most reliable source because it's just a scale. Thanks!

[Scott Adams]

Welcome to the forum. Can you provide the reference range for your tTg test? Each lab has a different range so knowing more would be helpful.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[maggiemaay]

9 minutes ago, Scott Adams said:

Welcome to the forum. Can you provide the reference range for your tTg test? Each lab has a different range so knowing more would be helpful.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

I'm unsure how to post pictures in here, so I'll do my best to translate:

Quest's Celiac Disease Comprehensive Panel

Tissue Transglutaminase AB, IGA: 1.7 U/mL

<15.0 = antibody not detected

>/=15.0 = antibody detected

My overall IgA is high, 364 (ref: 47-310 mg/dL)

[Scott Adams]

The test means that it's unlikely that you have celiac disease, but normally a full panel is done that includes a couple of other tests, and it is too bad those were not done.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[trents]

Stay on liberal amounts of gluten until all testing for celiac disease is complete or the testing will be invalid.