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What to Expect: Celiac Disease Program

If you suspect your child may have celiac disease or gluten sensitivity, the first step is to talk with your child’s primary care provider about your concerns. He or she may order some tests and can make a referral to the Celiac Disease Program at Children’s Mercy.

A nurse coordinator will contact you to schedule a clinic visit for your child. The nurse coordinator will identify the type of appointment that is best for your child based on testing that has already been completed. We recommend that children remain on a regular diet that contains gluten until a diagnosis of celiac disease is made in clinic.

Initial consultation

We see children who have celiac disease symptoms, positive lab work, a family history of celiac disease or a diagnosis of celiac disease by endoscopy in our clinic. At your first appointment, we’ll discuss your child's history and the doctor will recommend any additional tests that may be helpful or arrange for education on the gluten-free diet.

Treatment for celiac disease

The only treatment for celiac disease is maintaining a strict gluten-free diet, which helps manage symptoms and promotes intestinal healing. In fact, the damage to the lining of the intestines is reversible after eating gluten-free for several months, but to stay healthy, your child will need to follow the diet for a lifetime.

Gluten-free education

At Children’s Mercy, we can connect you with an experienced and knowledgeable dietitian who can help you adjust your family’s lifestyle to accommodate a gluten-free diet. It’s important to make sure your child is getting appropriate nutrition and avoiding all traces of gluten. You may be surprised to find that certain brands of personal care and other everyday items can contain gluten—lip balm, shampoo and Play-Doh, to name a few.

With the help of your care team in the Celiac Disease Program at Children’s Mercy, you’ll have all the tools you need to navigate the gluten-free diet for your child. Please note that diet education appointments with a registered dietitian last about two hours.

Follow-up visits

After your child is diagnosed with celiac disease and begins a gluten-free diet, they will be seen in our clinic at regular intervals every three to six months until their celiac is well-controlled. After the first year, they will be seen in clinic annually and on an as-needed basis.