Treatment and Support for Children with Celiac Disease

Currently, the only available treatment for people with celiac disease is to follow a gluten-free diet for the rest of their lives. Although this can be very challenging for children and families, the good news is that it works. A gluten-free diet allows the intestine to heal, and symptoms usually go away within a few months.

At the Cincinnati Children’s Celiac Disease Center, our team of pediatric gastroenterologists, registered dietitians and nurse coordinators helps you understand your child’s diagnosis and how to maintain a gluten-free diet. Our specialized clinic provides:

• Expert medical care from our doctors and nurses
• Educational sessions with experienced dietitians
• Resources from our social worker

Your child’s nurse coordinator is your “go-to person” whenever you have a question or concern about how your child is doing. You can reach out via MyChart or a phone call, and the nurse coordinator will make sure you receive the support you need.

Following a Gluten-Free Diet

During your child’s first appointment, or during a dedicated educational session, you and your child may meet with one of our dietitians to learn about:

• What a gluten-free diet is
• How to read food labels to avoid foods that contain gluten (wheat, barley and rye)
• How to ensure your child still gets the nutrition needed for growth and development
• Gluten-free substitutes for your child’s favorite foods
• How to avoid “hidden” gluten

Our dietitians are extremely knowledgeable about celiac disease and offer many expert “tips and tricks” to help your family adapt to a gluten-free lifestyle. They are available to meet with you and your child during follow-up visits at the celiac disease clinic. You also can schedule follow-up appointments with them at different times.

Expert Follow-Up Care

If your child is diagnosed with celiac disease, the doctor will talk to you about the importance of follow-up visits. These visits allow our team to:

• Evaluate how your child’s symptoms are responding to a gluten-free diet
• Monitor your child for health issues that can arise when a person has celiac disease (such as poor growth)
• Identify whether other food allergies or sensitivities may be causing lingering symptoms, such as belly pain or nausea
• Order tests to check for intestinal healing
• Talk to you about opportunities to participate in celiac disease research
• Meet with the dietitian to talk about any concerns related to your child’s diet

Your child’s first follow-up visit will take place two months after your first appointment in the clinic, then every six to 12 months after that.

Support from Social Workers

Social workers at Cincinnati Children’s can provide information and resources to help your family manage your child’s dietary needs at school. They can help you understand what accommodations your child’s school can make for your child and how to request those accommodations.

Social workers also can provide information about tax breaks that can help families manage the extra costs associated with following a gluten-free diet.

Specialized Clinic for Patients with Type 1 Diabetes and Celiac Disease

Children with Type 1 diabetes are six times more likely to develop celiac disease than those who don’t have Type 1 diabetes. In fact, 6-8% of people with Type 1 diabetes will develop celiac disease. Early detection and consistent follow-up is critical for these patients, especially since they are at increased risk for diabetic complications.

With that in mind, Danny Mallon, MD, pediatric gastroenterologist and co-director of the Celiac Disease Center, teamed up with pediatric endocrinologists at Cincinnati Children’s to establish a monthly Type 1 diabetes/celiac clinic. Children who have both conditions see Dr. Mallon one or two times a year when they come to Cincinnati Children’s for a diabetes checkup. During this appointment, they also see a dietitian who has expertise in both diabetes and celiac disease dietary management.

This clinic is an opportunity for the celiac disease care team to watch for signs of:

• Low blood sugar problems that could be related to intestinal damage caused by celiac disease
• Nutritional, heart and kidney problems that can occur in people who have both Type 1 diabetes and celiac disease
• Mental health concerns that can arise when children and families have to manage both diabetes and celiac disease