3 Yrs gluten-free, What Tests To Do?

[lcarter]

Been gluten-free for 3 1/2 yrs [and DF for 25yrs] except for rare accidents. I went on the diet on my own out of pure desperation and frustration with doctors after years of their neglect and lack of knowledge about digestive disorders. The final motivation to hunt for an answer on my own was an ER visit with intestines almost totally swollen closed -- fortunately, I talked the surgeon out of removing part of my intestine at the time. Before starting the gluten-free diet, I could check off nearly all the Celiac symptoms listed, including seizures and peripheral nueropathy. I feel very certain that it is Celiac, and not just Gluten Intolerance, because my symptoms were so dramatic and varied. But, sometimes I think it would be nice to have medical verification. Enterolab looks like a possible alternative to having to go back on gluten for 4-6 weeks so that an endoscopy can be done...but which test do you all recommend in a situation like mine?

[tarnalberry]

After 3.5 years gluten free, you can't test for celiac disease. Because, technically (if you're gluten free), you're in remission. (Celiac disease being the only autoimmune disease we can *stop occurring*, by eating strictly gluten free.) The tests all look for antibodies (whether in the blood or in the stool) or the damage caused by the antibodies (via biopsy). If there are no antibodies circulating (and haven't been for a while, in the case of stool testing), there's nothing to detect. It's not that you don't have celiac disease, it's that you can't test for it, because it's only active if you eat gluten.

You can do a genetic test, but there are severe limitations for using that to determine if you've got the known genes, but there is a small percentage of biopsy proven celiacs who do not have the currently known genes, and most people who have the genes do not test positive for celiac disease. (30% of the population have the genes, only 1% of the population has celiac disease.) And, that doesn't even begin to cover trying to determine if you're "merely" gluten intolerant, which seems to be a similar, but slightly different beast.