MAYBE you have just been diagnosed with celiac disease, or maybe you were diagnosed several years ago. You’ve been told what it is so many times, you can dutifully recite it by rote: an autoimmune condition in which the body reacts to the presence of gluten, a protein in wheat, rye and barley, by damaging the villi in the intestine that are essential for absorbing nutrients.
It may have taken years for you to be diagnosed with celiac disease as you were treated for other conditions. And now that you know what you have and that you need to follow a strict gluten-free diet to feel well, you find that’s not so easy. You have questions about everything from what nutrients you need, to how much damage accidental glutening does, to what the future holds for treatments. Or, you may want to know why you are still experiencing symptoms, even though you have been eating gluten-free.
To help with these issues, Allergic Living consulted three professionals – gastroenterologists Dr. Joseph Murray of the Mayo Clinic and Dr. Alessio Fasano of Massachusetts General Hospital, and Shelley Case, a registered dietitian who is an authority on the gluten-free diet. Their thoughtful and commonsense responses should help you understand and manage your celiac disease better than ever.
Why don’t I feel better even though I’m on a gluten-free diet?
Dr. Joseph Murray: I often have patients ask, “I’ve invested so much into this diet so why has it helped some symptoms and not others?” It depends on whether they have been gluten-free for six months or six years and how long they’ve gone before they were diagnosed in the first place.
I just saw a patient the other day who had neurological symptoms and wanted to know if those had been caused by her celiac disease. But her intestine had healed. We use blood tests to screen for [elevated] celiac antibodies and follow-up biopsies to look for damage. If those tests are negative, then we tell such patients that we have no basis to blame celiac disease, not even for symptoms such as diarrhea. And if blood tests are positive, then we have to review their diet, as gluten exposure is occurring.