Newbie With A Question

[~Tinkerbell~]

Hello everyone, i'm looking for some advice about celiac disease. For the past 3 years I have had a lot of trouble with my stomach, and just not feeling well all together. I went to many doctors and specialists but with each one was given some new type of medicine or was basically told it was "all in my head". Last month, feeling desperate, I decided to try the gluten free diet. Within a week I had felt better than I have in years. But now I have two questions. 1- Do I need to go to the doctor to get tested for celiac disease? and 2- If I do will I have to go back to eating gluten food? Thank you for your help!

[RiceGuy]

Welcome to the board!

It is up to you whether to seek an "official" diagnosis. Some feel that they need a doctor to tell them not to eat gluten in order to make a firm resolve to stick with a gluten-free diet. Others are content with knowing what foods to avoid, and have no desire to go through the discomfort of eating gluten for several weeks or months just to be told what they already know. It is very common for symptoms to be considerably worse when going back to eating gluten, which you'd need to do.

The tests are not very reliable, and since the antibodies and intestinal damage should diminish on a gluten-free diet, the chances of a false negative increase dramatically if you're not eating gluten. It is usually suggested to eat gluten for at least six weeks before getting tested.

Some doctors will give a diagnosis based on blood tests alone, though most insist on a biopsy, which is basically hit and miss.

There are places that offer testing without going to a doctor, and I know of at least one which claims accuracy up to a year after going gluten-free. I don't know how reliable the results really are, but it might be a way to avoid having to eat gluten to test for the antibodies. AFAIK, that doesn't in itself indicate Celiac, but gluten intolerance still means you need to avoid gluten anyway.

[~Tinkerbell~]

Thank you very much for your help!

[JamMama]

Hello Tinkerbell,

I've been mainly glutenfree for 7 months, and feel dramatically better, unless I have some hidden gluten in diet. All the doctors say I need to do the gluten challenge, and I'm just not convinced that is the answer. I, too, am choosing to continue gluten free because the results are obvious - I may never know if I'm celiac or gluten intolerant. My only concern is for family members - and I, too, don't know if any of the genetic blood tests are accurate or not. Any other advice on that issue - or other ways to determine celiac? My antibody test was negative but I had been off gluten for 6 months when I took the test.

Jamama