What is Celiac Disease?

Celiac disease is a chronic condition in which the body cannot tolerate gluten. Gluten is a protein found in wheat, barley and rye.

When a person with celiac disease eats gluten, their immune system attacks the small intestine. This type of attack is called “autoimmune.” This attack causes damage to the villi. Villi are small, finger-like ridges that line the small intestine. When the villi get damaged, the body cannot absorb nutrients like it should, causing symptoms and serious health problems.

What Are Symptoms of Celiac Disease?

Symptoms vary from patient to patient. Some patients do not have symptoms at all. The most common symptoms include:

• Belly pain
• Bloating
• Constipation
• Diarrhea
• Nausea

Children with celiac disease may have poor growth or have trouble gaining weight.

Less common symptoms include:

• Headache
• Joint pain
• Mouth sores
• Rashes

Experts believe that at least one in 100 people has celiac disease. Right now, there is no cure for celiac disease. Following a strict, 100% gluten-free diet is the only way to treat it. Eating small amounts of gluten, even crumbs from a cutting board, can trigger symptoms and cause villi damage.

When Is a Child More at Risk to Have Celiac Disease?

Celiac disease can affect males and females of all ages and races. Some of the factors that can increase a person’s risk of celiac disease include:

• A family history of celiac disease
• Type 1 diabetes
• Autoimmune thyroid disease
• Down syndrome
• Turner syndrome

Other Health Problems Related to Celiac Disease

If people with celiac disease continue to eat gluten, they may develop serious long-term health problems. These can include:

• Anemia (due to low iron in the blood)
• Weak bones
• Lactose intolerance
• Seizures
• Migraines
• Weakness, numbness, or pain in hands, feet or other body parts
• Vitamin and mineral deficiencies
• Poor growth
• Damage to the liver, pancreas and gall bladder
• Trouble getting pregnant
• Coronary artery disease
• Intestinal cancers

Diagnosing Celiac Disease

Diagnosing celiac disease is not always easy. If you think your child may have celiac disease, it is important to seek care from a pediatric doctor specializing in gastroenterology. They can make or confirm a diagnosis of celiac disease.

During your child’s first appointment, the doctor will ask questions about your child’s medical history, family medical history and current symptoms. This will help the doctor decide whether to test for the disease.

Doctors use two types of tests to diagnose (or rule out) celiac disease: blood tests and getting samples of tissue from the small intestine.

Blood Tests for Celiac Disease

Blood tests for celiac disease measure two antibodies: immunoglobulin A (IgA) and tissue transglutaminase IgA (TTG-IgA).

To ensure an accurate result, your child must eat at least some gluten in the weeks before the blood tests. This is because the tests find antibodies that are only present in people with celiac disease who are eating gluten.

Even eating two slices of bread per day for eight to 12 weeks is enough to make sure the test is accurate. If your child is following a gluten-free diet and you are concerned about re-introducing gluten before the blood test, talk to a member of the care team.

Endoscopy (“scope”) with Biopsy

A scope shows if the intestine is inflamed and damaged.

The scope is an outpatient test that is done in the hospital while the child is asleep (under anesthesia). A doctor puts a thin, flexible tube with a camera at the end down the throat into the stomach and intestine to look at the lining. During the test, the doctor removes small tissue samples from the first part of the small intestine.

A doctor who works in the lab will look at the tissue samples under a microscope to look for damage caused by celiac disease.

Celiac Disease Treatment

There is no cure for celiac disease. People with this lifelong condition must remove gluten from their diet to have the best health and quality of life possible.

The most common sources of gluten are bread, cereals, pasta, cookies, cakes and crackers. However, gluten is present in many other types of foods because it is used as a filler or binding agent.

Follow-Up Care for Children with Celiac Disease

Children with celiac disease need to follow up with their care team every six to 12 months. This is a chance for the doctor to monitor the child’s progress, ask about symptoms and see how the gluten-free diet is going. Blood tests can help the doctor see if the immune system is still active against gluten. They also show if the small intestine is healing.

A dietitian can help you as you make changes to your child’s eating habits on the road toward better health. The dietitian can help you:

• Understand what a gluten-free diet is.
• Learn how to read food labels to avoid gluten.
• Find “hidden” sources of gluten.
• Ensure your child still gets the nutrition needed for growth and development.
• Find gluten-free substitutes for your child’s favorite foods.

Celiac Disease Resources

A celiac disease diagnosis can cause stress and anxiety as the family adjusts to a gluten-free lifestyle for their child. The good news is that the world is becoming a friendlier place for people who must avoid gluten. Your child’s care team can share resources to help you adjust.

Many websites give education and support to help your child maintain a gluten-free lifestyle. At Cincinnati Children’s, we recommend:

• Cincinnati Children’s Celiac Disease Center
• Celiac Disease Foundation - offers medical research, patient and doctor education, and public policy advocacy.
• Gluten Intolerance Group - gives support and education for a gluten-free lifestyle.
• Beyond Celiac - offers advocacy, education and research.
• National Celiac Association - gives education and advocacy for families.
• Triumph Dining Guide - shares resources and support for dining out.
• LillyB’s - offers gluten-free food suggestions.
• Gluten-Free Living - shares recipes and lifestyle tips.