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Celiac disease in children


Celiac disease is an autoimmune disorder that causes lifelong intolerance to gluten. When a person with celiac eats gluten (a protein found in wheat, barley and rye), the immune system responds by damaging the lining of the small intestine. This damage interferes with absorption of nutrients needed to keep a child growing and healthy.

The Celiac Program at Children’s Mercy provides comprehensive care for children with celiac disease or non-celiac gluten sensitivity. The program diagnoses approximatly 150 children with the disease each year, and because it is a lifelong condition, follows them every year until they transition to adult care.

Your Celiac Program care team

In additon to a medical provider, families meet with a celiac-focused dietitian at every visit to help achieve a strict gluten-free diet, as well as learn new approaches to cooking, nutritian and wellness.

Children have access to a pediatric psychologist who addresses the social and emotional impact of having Celiac disease, and can help families advocate for school-based services to accomodate a child's medical needs.

To be certain that all patients have access to nutritious and safe gluten-free food regarless of their economic status, the program has formed a unique partnership with the Food Equality Initiative (FEI), a local gluten-free food pantry.

Symptoms of Celiac disease

There are many symptoms associated with celiac disease, and they vary widely from one person to another. Some people have severe reactions, while others experience no symptoms at all. Common symptoms include:

  • Abdominal pain, bloating
  • Chronic diarrhea or constipation
  • Pale, foul-smelling stools
  • Vomiting
  • Weight loss, or trouble gaining weight
  • Short stature
  • Fatigue
  • Iron deficiency anemia that does not respond to iron replacement therapy
  • Osteopenia/osteoporosis
  • Headache
  • Joint pain
  • Skin rash

Celiac disease can develop at any time in a person’s life, but childhood is the most common time to start showing signs of celiac disease. Celiac disease is more common in children with:

  • Type 1 diabetes
  • Thyroid disease
  • Down syndrome
  • Turner syndrome
  • Those with a family history of celiac disease

Diagnosis Celiac disease in children

The Celiac Program diagnoses approximatly 150 children with the disease each year. The steps in diagnosing Celiac disease in children include:

  • The first step in evaluating for celiac disease is a usually simple blood test (Tissue Transglutaminase tTG-IgA). In order for the test to be effective, it must be done while your child is still eating gluten in their diet.
  • If the blood test comes back positive, you will consult with a gastroenterologist and your child will be scheduled for an upper endoscopy with biopsy of the small intestine to confirm the diagnosis, since the blood test can sometimes give false positive results.
  • An endoscopy is a procedure where the doctor passes a small, flexible tube down your child’s throat to look at the inside of the esophagus, stomach and small intestine. The tube has a light and a camera attached, and the doctor can pass other tools through the tube to take small tissue samples that can be tested in the lab. This allows the doctor to see whether there is damage to the intestinal tissue due to celiac disease. Learn more about endoscopy procedures.

What to expect during your visit


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 playdough, 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.