Celiac Disease in Children

What Causes Celiac Disease in Children?

Genetics plays a big part in celiac disease. Nearly all people with celiac disease carry one of two genes, either HLA-DQ2 or HLA-DQ8. To develop the condition, you must have one of these specific genes.

While having one of these genes doesn't mean you are sure to get celiac disease, it does mean there’s a potential to develop it at some point in life. Still, many people with one of these genes never develop celiac disease.

What Populations Are Most at Risk for Celiac Disease?

If someone has celiac disease, their parents, siblings and children have a higher risk of having it as well. We recommend blood test screenings for all first-degree relatives.

Additionally, people with specific health conditions have a higher genetic risk for celiac disease. Some of these conditions include:

• Down syndrome
• Turner syndrome 
• Type 1 diabetes

What Are the Symptoms of Celiac Disease in Children?

Celiac disease can cause a wide range of symptoms. Most often, children experience difficulty digesting their food. Others may not have any noticeable symptoms.

Most Common Symptoms of Celiac Disease in Children

Children’s symptoms often include:

• Abdominal pain 
• Constipation 
• Diarrhea
• Weight loss or poor growth

Less Common Symptoms of Celiac Disease in Children

Your child may also experience:

• Behavioral changes
• Blistering skin rash 
• Brain fog
• Delayed puberty
• Headaches
• Joint pain
• Short stature (poor linear growth)
• Vomiting

How Is Celiac Disease in Children Different From Celiac Disease in Adults?

Celiac disease can affect both children and adults, but symptoms tend to differ. Children are more likely to have classic digestive issues like abdominal pain, diarrhea, constipation, and difficulty gaining weight. Adults tend to have less obvious symptoms, which may not even involve the digestive system.

How Is Celiac Disease Diagnosed in Children?

In the majority of cases, your child’s doctor will likely check for celiac disease with a blood test, followed by an endoscopy to confirm the diagnosis:

• Blood tests: The main blood test measures tissue transglutaminase IgA (TTG-IgA), an antibody that indicates the likelihood of celiac disease. Other tests help determine the accuracy of the TTG-IgA and whether your child requires a different screening test.
• Endoscopy: If the TTG-IgA blood test finds high numbers of these antibodies, the next step is usually an endoscopy. During this procedure, a doctor inserts a small, flexible tube called an endoscope through the mouth to examine the stomach and small intestine. They also take samples of the small intestine (biopsies) to check for signs of damage/inflammation under the microscope. 

It’s important for your child to keep eating gluten regularly before their diagnostic testing. Removing gluten from the diet can lead to intestinal healing. This makes it difficult to get an accurate diagnosis, so your child may need to resume eating gluten to complete the testing.

How Is Celiac Disease Treated?

Currently, the only effective way to treat celiac disease is to follow a strict, lifelong gluten-free diet. This means your child needs to avoid all foods that contain wheat, barley and rye. Also, watch out for other grains that contain gluten, like triticale and oats that are not certified to be gluten-free.

Gluten-free Diet

What can your child eat? Focus their diet on naturally gluten-free foods, including:

• Dairy
• Gluten-free grains (buckwheat, corn, millet, quinoa, rice)
• Fruits
• Meat/fish
• Vegetables

Treatment Risks

While a gluten-free diet is generally safe, it requires careful attention to nutrition. Not managing your child’s nutrient intake properly can lead to certain risks:

• Nutrient deficiencies: Gluten-free foods might lack important nutrients like B vitamins, calcium, magnesium and iron. Your child may need to take supplements to ensure they get the necessary nutrients.
• Weight gain: Many gluten-free substitute foods can be higher in calories. These extra calories can lead to increased weight gain.

Long-Term Effects of Celiac Disease

If celiac disease is not treated, there are long-term health risks, including: 

• Anemia (low red blood cell count)
• Difficulty gaining weight or impaired growth
• Delayed puberty
• Fertility issues
• Increased cancer risk
• Vitamin and mineral deficiencies
• Weakened bones, similar to osteopenia and osteoporosis in adults

Common Misconceptions About Celiac Disease

Understanding celiac disease can be confusing since there is a lot of misleading information available. Celiac disease is NOT:

• A food allergy: People often believe their child has an allergy to gluten. Celiac disease is an autoimmune condition where the immune system attacks the small intestine.
• Easily diagnosed: Screening lab tests alone are not accurate for diagnosing celiac disease. They may lead to false positives. In most cases, we rely on specific blood tests and endoscopy with biopsy to confirm your child’s diagnosis. 
• Managed without strict adherence to a gluten-free diet: Successfully controlling celiac disease requires a person to eat a gluten-free diet for the rest of their lives.

Living With Celiac Disease 

Parents are key to their child's success in managing celiac disease. Receiving the diagnosis can be overwhelming, but at Lurie Children's, we are here to support your entire family.

We recommend scheduling an appointment with one of our pediatric registered dietitians (RD). They specialize in celiac disease and the gluten-free diet. You’ll meet with them one-on-one to cover:

• What a strict gluten-free diet looks like
• How to read food labels to identify gluten
• Tips to avoid gluten exposure and cross-contamination at home (dedicated toasters and kitchen utensils) and out at restaurants, in school, at friends’ homes, etc.

Lurie Children’s Pediatric Gastroenterology Division

Our Pediatric Gastroenterology Division offers specialized, compassionate care tailored to your child’s unique needs. This individualized treatment helps ensure a smooth and supportive journey through celiac disease diagnosis, treatment and long-term management.