Managing Celiac Disease in Kids: It Takes a Village

Ritu Verma, MD


May 13, 2013

Editorial Collaboration

Medscape &

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I am Dr. Ritu Verma. I am a pediatric gastroenterologist at Children's Hospital in Philadelphia and Director of the Center for Celiac Disease. We are talking today about celiac disease, which is an autoimmune genetic condition. At the Center, we see children who have been tested with a blood test, a celiac panel, which includes a tissue transglutaminase and endomysial antibody. If these antibodies are elevated, the children are then referred to the Center or to a pediatric gastroenterologist. Once a screening blood test is positive, we do an upper endoscopy with biopsies of the small intestine as a confirmatory process. The upper endoscopy is an outpatient procedure without too much preparation. The children do, however, need to stay fasting overnight.

Once endoscopy is done, we obtain biopsies from the small intestine. To make a diagnosis of celiac disease, the duodenal biopsies must demonstrate some amount of villous atrophy. There are varying degrees of atrophy and an increase in intraepithelial lymphocyte. Once a pathologist sees this combination along with a positive celiac panel, a diagnosis of celiac disease is made.

Celiac disease is treated by a gluten-free diet. Currently there are no medications. Once you are on a gluten-free diet, the intestine starts healing. So the most wonderful thing about this disease is that we know that if you go on a gluten-free diet, your disease is under great control, your intestines heal, and you are as normal as anyone else after some time.

However, the bad thing about the disease is that if you do ingest any gluten or any amount of cross-contamination, the damage to the intestine comes right back. More important, gluten also irritates and damages your immune system. That causes other conditions and other autoimmune diseases -- for example, thyroid disease -- in the future. Hence, it makes it very difficult to manage the condition if you are not educated well about the diet.

Once our patients are diagnosed, we see them in our Celiac Center, where they undergo a comprehensive 2- to 3-hour visit the first time. This visit includes education about celiac disease, the need for the children to stay away from gluten-containing foods, and the need for children and families to watch out for cross-contamination. The visit also includes a nutritional evaluation and comprehensive education about what is gluten, what is a gluten-free diet, and information about where parents can go to shop for some of these foods.

Even with this initial education, it is not easy for the children or the parents to continue with this diet, so we have ongoing educational sessions. We have support groups where the children can actually meet other children who have the same condition who are dealing with this and share their experiences.

It is extremely important that, when we diagnose a child, we screen the rest of the family members. This screening is the blood test. Family screening is very important because we know that undiagnosed celiac disease can progress to other autoimmune conditions. If you diagnose a child after 10 years of age, the chance that the child will develop another autoimmune disease is almost 25%. So screening is extremely important when the index case is diagnosed.

Then, follow up -- because now we have to help these families. We have to help them stay on this path of a gluten-free diet, help them find places that they can go out to eat, help the children at school get lunches that are gluten-free, and help children in college get gluten-free foods.

We provide comprehensive care at our center. We have dietitians, social workers, and psychologists who help the families to continue on. It is extremely important that, even if a child does not have any symptoms, they stay on a gluten-free diet to avoid other conditions.