What to do When A Gluten Free Diet Doesn't Work

Wondering what to do when a gluten free diet doesn't seem to be working? Sometimes a patient diagnosed with celiac disease goes a gluten free diet and the symptoms come back or the diet doesn't help at all. Joseph Murray, M. D., discusses different approaches doctors take to help patients with this problem.

The first approach is to review the original diagnosis of celiac disease. This involves looking back at the original biopsy and blood tests done before the patient went on gluten free diet. Sometimes a genetic test will be done to make sure the patient has the genetic type required for celiac disease. Sometimes the results will show the patient doesn't have celiac disease but have other conditions such as tropical sprue or drug induced diarrhea illnesses. The next approach is to look for gluten contamination in the diet. Gluten can find the patient due to it being hidden in different food products or a patient may be more casual with the diet. One way to check for gluten contamination is to look for positive celiac activity in a blood test. If a patient has been on a gluten free diet for at least a year and the blood test shows positive signs of celiac activity, the patient could have gluten contamination in the diet. Doctors will work with expert dietitians to help find out where the source of gluten may be coming from. The third approach is looking for certain conditions that can be associated with celiac disease. The conditions could be small intestinal bacterial overgrowth, microscopic colitis, irritable bowel syndrome, or excrement pancreatic insufficiency, meaning the pancreas isn't doing a good job producing digestive juice. All of the conditions need medical evaluation to identify. A common condition that may cause patients to not get better on a gluten free diet is lactose intolerance. This happens in patients with celiac disease because the intestinal lining is damaged because of celiac disease. Lactose intolerance can lead to bloating, diarrhea, and overall discomfort. Often patients will be told to restrict lactose a month or two into a gluten free diet to help reduce continued discomfort. Refractory celiac disease will occur in only a small number of patients. This is a serious condition that needs special evaluation in a celiac center. Treatment with a gluten free diet usually works for patients with celiac disease. There are a small group of patients who need careful, systematic evaluation to get them to the health where they should be.

For more information about celiac disease, visit mayoclinic.org/celiacdisease.

Dr. Murray is a gastroenterologist and celiac disease expert at Mayo Clinic.