Help with diagnosis

[laura622]

I've struggled with "IBS" for 20 years now (since I was 17). However, I've always thought it HAD to be more. In 2019 I had some blood test ran ttg and iga (?) And they were normal range. Now, I also had some genetic tests ran that show I carry a gene making me high risk for celiac. I am miserable almost every day and spend a good 50% of my time in the bathroom. The bloating, the terrible gas, and now I have these strange sandy type bowel movements. Has anyone else had normal serum blood work but still have celiac? What can I do??

[trents]

Welcome to the forum, laura622!

The tTG-IGA is the most common antibody test that doctors order when checking for celiac disease. It combines good specificity with good sensitivity, at least for those from white European descent. It is much less reliable when used on those of black African descent. But even for whites, it misses 20% of those who are confirmed to have celiac disease by endoscopy with biopsy. There are other antibody tests that can be run to detect celiac disease and it is too bad more docs either are unaware of them or don't feel they can justify the extra expense. One size doesn't fit all and some people show atypical immune system responses to the tTG-IGA. What the one misses may be caught by others. Here is a primer on celiac antibody tests: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It is also possible that you have a gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity) for which there is no test. celiac disease must first be  ruled out if celiac-like symptoms are present. celiac disease and NCGS share many symptoms in common but NCGS is 10x more common than celiac disease.

[Scott Adams]

Below is some more info on blood testing for celiac disease, and at this point you have two choices: 1) Try getting re-tested, and to do this you need to continue eating gluten daily until all testing is completed; OR 2) Try a 100% gluten-free diet for a few months to see if your symptoms go away, and if they do you are likely in the NCGS area.