Celiac Disease Program
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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 causes damage to the lining of the small intestine. This damage interferes with absorption of nutrients needed to keep a child growing and healthy.
The Celiac Disease Program at Children’s Mercy provides comprehensive care for children with celiac disease or non-celiac gluten sensitivity. The program diagnoses approximately 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 Disease Program care team
In addition 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, nutrition 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 accommodate a child's medical needs.
Food Equality Initiative
To be certain that all patients have access to nutritious and safe gluten-free food regardless of their economic status, Children’s Mercy Celiac Disease 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
- Iron deficiency anemia that does not respond to iron replacement therapy
- Joint pain
- Pale, foul-smelling stools
- Short stature
- Skin rash
- Weight loss, or trouble gaining weight
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:
- Those with a family history of celiac disease
- Thyroid disease
- Type 1 diabetes
- Turner syndrome
- Down syndrome
Diagnosis celiac disease in children
The Celiac Disease Program diagnoses approximately 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.
- 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.
Medical Director, Nutrition Services; Assistant Professor of Pediatrics, University of Missouri-Kansas City School of Medicine