My Doctor said I Don’t Have the Celiac Gene but, I Feel Better on a Gluten-Free Diet - What should I do?

When your doctor orders the gene test because he or she believe you could have celiac disease they are looking to see if you have HLA-DQ2 and HLA-DQ8 (these are the genetic markers specifically for celiac disease). 93 to 97% of celiacs have one of these genes commonly referred to as DQ2 or DQ8. Now here is where it gets a little tricky, 45 to 50% of people with non-celiac gluten-sensitivity also have one of these genes. And so do 30% of the general population. What is really important to understand is that this test is really indicative of a gluten-related disorder not of celiac disease. 

It has been reported that up to 7% of the celiac population have other genes which are not tested and therefore the gene test is not 100% conclusive. So it is possible to have celiac disease and not have either DQ2 or DQ8 that is the first thing to understand.

There are additional tests that your doctor can order to confirm his or her initial diagnosis that you do not have celiac disease. My best recommendation would be to order an IgA, IgG and IgM test together, which will tell your doctor what is going on in your gut with IgA but also what is going on with the rest of your body with IgG and IgM. Not one test now and another later, all together it is important to have a clear picture how your body is responding. If your doctor will not order these additional tests after you have asked, then I usually suggest finding another doctor who will.

It is important to know and understand what is going on in your body and how to best help and support your body if you do believe that you are having a bad reaction to gluten as you mentioned. I should also tell you that you should not be jump on and off gluten as this can cause more and sometimes complications and damage. When testing, you typically need to be eating gluten for the most accurate results. So depending on how long you have been off gluten and eating gluten-free will determine obviously how your body is responding to gluten. Clearly your body will not be reacting as violently if it has been several weeks or months.

So stay persistent and follow-up with your doctors it is important to know what is truly going on with your health.

If your test results still come back negative it is hugely important to understand is that if your body is telling you that you feel better on a gluten-free diet than you should listen to it. You may be gluten-sensitivity which can have the same symptoms in the body you just won’t have the small intestine damage or develop the tissue transglutaminase (tTG) antibodies found in celiac disease yet. I say “yet” because if the testing was done incorrectly this very well could still be your issue and it will show up later in a much more advanced stage.

Hope this helps answer your question, dear reader. Feel free to share your thoughts and feelings on this below. And if you have a question of your own, click the ask a question button and I’ll do my best to answer soon.