This coming Thursday we have another GI appointment coming up, this time for my 15 yr old. We will also be making plans for my 2 yr old on the biopsy to find if he has celiac disease. One question that has been running through my head is do we really need to have it done? Can't we just cut out the gluten now and see what happens? At first suspicion of possible celiac disease why not cut out gluten? Cutting out gluten can give false reading's on test. So this is why I have not cut it out before. Now my question is now that I know he is at high risk should i go ahead with the biopsy or just cut out the gluten? The link below has help me with some of my question though I still plan to have questions ready for doctor on Thursday. Thanks for stopping by Simply Living, rroadwetravel ....

Confirming a Diagnosis of Celiac Disease

As a celiac, I often encounter people who have read or heard of celiac disease, cut out gluten and felt better. Then they have diagnosed themselves as celiacs. My understanding is that anyone who thinks they are celiac should NOT go on a gluten free diet, since it interferes with correct diagnosis. Could you comment on this trend?
Kathleen in Ottawa

Dr. Crowe responds: Monica, you ask a very relevant question, since the trend of going gluten-free before celiac disease is confirmed is becoming more and more common. The simple answer to your question is no, there is no one test that can confirm celiac disease once you have been on a gluten-free diet for a long period of time. Kathleen in Ottawa (my hometown) aptly labeled this as a “trend,” and she is also correct in pointing out that eliminating gluten before a diagnosis is made can indeed interfere with making a proper diagnosis of celiac disease.

Going on a gluten-free diet for many months, and particularly for a year or more, can lead to the most commonly used diagnostic tests for celiac disease to no longer being helpful. Even intestinal biopsies can go back to a normal or near-normal appearance if you have been gluten-free for a long time. Without an intestinal biopsy that shows the abnormalities of celiac disease, you cannot be diagnosed with celiac disease. (I know I have said this already but it is a key point to hammer home.)

Even if you feel better on a gluten-free diet, this does not mean you have celiac disease. One study showed that only 36 percent of patients who felt better on a gluten-free diet actually had celiac disease. Often, feeling better without gluten in your diet is transient, and then you are left not knowing the true cause of your problem.

Another reason for not going on a gluten-free diet without a true diagnosis of celiac disease is that it may encourage family members to be screened for the disease, even though you may not really have it. As Lara Field, pediatric dietitian specializing in celiac disease at the University of Chicago (http://www.feedkids.com) points out, going gluten-free can also lead to certain nutritional deficiencies, so you should be certain of the diagnosis before committing you — and perhaps your entire family — to this diet. Studies in the United States, Canada and the U.K. also show that the cost of eating gluten-free products is two to three times greater than comparable gluten-containing products. So taking on this extra expense without being certain such treatment is necessary may not be a wise financial decision.

Of course, if a diagnosis of celiac disease is confirmed, treatment with a gluten-free diet is mandatory. In that case, I encourage working with a knowledgeable dietitian/nutritionist to help you in your quest to eat a balanced and nutritious gluten-free diet.