Celiac Tests

[Judithg]

Hi, I'm new to this board, but not completely new to living gluten-free. Several years ago I tested positive for gluten intolerance during some routine allergy testing. However, when I was tested for celiac disease (blood tests and endoscopy), the results were negative. I went on a gluten-free diet anyway, because I felt better without gluten. But because I wasn't celiac, I wasn't always careful. Whenever I would cheat a little bit, I didn't feel that bad. But if I started eating wheat everyday, I would get sick again (digestive problems, headaches, fatigue). So I was fairly careful but not strict. For the past year, I've had terrible digestive problems. When they started I realized that a couple of foods I was eating regularly had hidden gluten in them. I tried to be stricter with my diet, and I would get better than get worse again. Sometimes getting worse was directly traceable to eating some hidden gluten. Since there are more accurate tests now than there were when I was first tested for celiac, the doctor tested me again. However, he told me I didn't need to do a gluten challenge. Again I tested negative for celiac. Now I'm wondering if the fact that I was essentially gluten-free at the time of the test may have affected the results. I suppose I should just be as strict as possible about gluten and not worry about diagnosis, but I really would like some closure on the issue.

So how accurate can the test be if you're gluten-free at the time? Do people test negative sometimes for years than eventually test positive? Should I just give up on finding the answer and maintain a strict gluten-free diet?

Sorry this is long--I appreciate your feedback!!

[celiacfreeman]

yes you have to be have it in your system to get proper diag.

Also make sure they run the tTG test that mayo clinic recommends.

[Judithg]

Yep, it seems that my doc didn't quite do this right. The day that he gave me the order for the tests, he said just to go ahead and have them done that day. I knew I hadn't had any gluten for quite some time, but he said it wouldn't matter. And the two tests were fairly expensive, even after my insurance kicked in their portion. This is so frustrating! I guess I either have to have the tests done again, or I just have to go forward not knowing whether I have celiac disease or not.

[mcalister14]

In fact our small intestine heals rather quickly after going gluten-free. I read an article on this site suggesting that in order to receive an accurate diagnosis, one must be eating foods with gluten for 3-6 months prior to biopsy. That sounds like such a long time though!