Celiac Disease

Also called: Celiac Sprue, Gluten-Sensitive Enteropathy, Non-Tropical Sprue

Overview

What Is Celiac Disease?

Celiac (SEE-lee-ak) disease is a common autoimmune disorder, which is when the immune system attacks the body’s own tissues or organs by mistake. Celiac disease happens when eating gluten (GLOOT-in) — a protein found in wheat, rye, barley, and other grains — damages the lining of the intestines. This prevents the body from absorbing important nutrients, which can cause digestive problems and affect kids’ growth.

Doctors don't know for sure why the immune system reacts to gluten. But if your child has celiac disease, there are ways to manage symptoms and prevent damage to the body.

Top Things to Know

• In celiac disease, gluten harms the small intestine and keeps the body from getting nutrients.
• Kids may have symptoms like belly pain or bloating, diarrhea, constipation, tiredness, or no signs at all.
• The only treatment is a gluten-free diet, which helps the intestines heal.
• If a family member has celiac disease, there’s a chance your child could have it too.

Signs & Symptoms

What Are the Signs & Symptoms of Celiac Disease?

Celiac disease can cause a wide variety of symptoms. They can happen at any time in a child's life. Some kids have problems the first time they have gluten, but others get symptoms years after safely eating gluten products. And some people don’t have any symptoms.

Symptoms in Babies

A baby might show the first signs of celiac disease soon after starting solid foods like cereal. Symptoms might include:

• diarrhea
• belly pain or a swollen belly
• failure to thrive (not gaining weight or length at a healthy pace)

Symptoms in Older Kids and Teens

Symptoms of celiac disease in older kids and teens might include:

• diarrhea
• constipation
• pale, foul-smelling stools (poop)
• belly pain and bloating
• weight loss
• tiredness
• headaches
• painful skin rashes (usually in older teens), mostly around the elbows and knees

Over time, a child may develop anemia and mouth sores, might not reach the expected height, or have behavior issues.

What Causes Celiac Disease?

In celiac disease, gluten causes the immune system to damage villi (VIL-eye), finger-like projections that line the small intestine. Normally, villi absorb nutrients from food and send them into the bloodstream. Damaged villi can't absorb the vitamins, minerals, and other nutrients that a child needs to grow.

The cause of celiac disease isn’t known. It tends to run in families, so a child with family members who have the condition may be more likely to get it. Celiac disease also can happen along with other disorders, like:

• Down syndrome
• Williams syndrome
• type 1 diabetes
• autoimmune thyroid disorders

Diagnosis

How Is Celiac Disease Diagnosed?

To start diagnosing celiac disease, doctors will ask about symptoms and if any other family members have it. Your child may need to see a gastroenterologist (gas-troh-en-ter-OL-uh-jist), a doctor who cares for the digestive system.

Testing for Celiac Disease

Blood Tests

Checking for celiac disease usually starts with a blood test, like the tissue transglutaminase IgA (tTg-IgA) test. It looks for certain antibodies — proteins the immune system makes to spot and get rid of germs and other things it sees as threats. In kids with celiac disease, these antibodies target gluten and other proteins in the lining of the small intestine.

Genetic Tests

Genetic testing looks for changes in someone’s genes. By testing a small sample of blood, saliva (spit), or cells inside of the cheek, doctors can tell if there’s a chance a child will have celiac disease or won’t develop it at all.

Small Intestine Biopsy

If the blood test or genetic test results show that your child might have celiac disease, sometimes doctors will do a biopsy (take a sample of tissue or cells) of the small intestine. This is to confirm that the other results were right.

To do a biopsy, doctors put a long, thin tube (called an endoscope) through the mouth and stomach into the small intestine to get a small tissue sample. Kids are usually sedated (given medicine to relax) or under general anesthesia to sleep through the procedure.

Family Testing

If your child is diagnosed with celiac disease, siblings and parents should get tested too. They could have the disease but no symptoms. Celiac disease that isn’t found in adults for a long time can lead to serious health problems.

Treatment & Home Care

How Is Celiac Disease Treated?

There’s no cure for celiac disease. Researchers are working on new celiac disease treatments though, and many show promise. But for now, the condition is managed with a gluten-free diet. This lets the small intestine lining heal and helps ease symptoms.

How Can I Manage My Child’s Celiac Disease?

Managing celiac disease means making sure your child avoids gluten.

Dietary Changes

If your child has celiac disease, your doctor will guide you on which foods your child can eat and which to avoid. Your doctor may suggest that you meet with a registered dietitian (dye-uh-TIH-shin) for advice.

Your child’s diet should have no wheat, barley, rye, and related grains. No law requires food manufacturers to list gluten on food labels, so making sure your child avoids it can be hard. In the United States, all foods must be clearly labeled if they contain any of the top food allergens, including wheat. But wheat-free doesn’t mean gluten-free — some wheat-free products may have gluten-containing grains like barley and rye in them.

Carefully read food labels on all items before you buy them or let your child have them. And help your child learn to do it too. The Celiac Disease Foundation’s website lists many foods and drinks to watch out for.

Finding Safe Options

Here are some tips to remember when choosing foods:

• Start with the foods your child can eat. Safe foods and ingredients include foods made with the flours of corn, rice, buckwheat, sorghum, arrowroot, garbanzo beans (chickpeas), quinoa, tapioca, teff, and potato. Also OK are all plain and nonbreaded meats, fish, chicken, legumes, nuts, seeds, oils, milk, cheese, eggs, fruits, and vegetables.
• Watch for cross-contamination. Sometimes, gluten-free foods can come into contact with foods that contain gluten (called cross-contamination). For example, crumbs from regular wheat bread can find their way into butter, nut butters, jams, spreads, and condiments (like ketchup and sauces) if people don’t use a fresh knife or utensil each time. Using separate butter, jams, and spreads for people with celiac disease and keeping condiments in squeezable bottles is a great idea. You might also keep a separate toaster for gluten-free bread.
• Clean appliances, utensils, and work surfaces before you make gluten-free dishes, especially after handling foods that contain gluten. Wash your hands well and often when you prepare food.
• In restaurants: Tell the server or the kitchen staff about your child's condition so they know that your child's food must be free of gluten and related ingredients.
• In grocery stores: Most carry some gluten-free bread, cereal, baking mixes, cookies, crackers, and other products. Health food stores and natural food markets may have wider selections of these foods. Skip gluten-free products from bulk food bins because of the risk of cross-contamination.

What if My Child Does Eat Something With Gluten?

Even with these precautions, your child might eat something with gluten at some point. That’s OK — a small amount one time usually won’t cause symptoms right away. It might cause mild inflammation (like a little swelling or pain) in the gut, but the body can heal quickly. Normally, the small intestine makes a new lining every few days. But if your child keeps eating gluten, it can keep damaging the lining.

How Can I Support My Child?

If your child has celiac disease, tell the other adults in your child's life, like caregivers, teachers, school nurses, camp counselors, babysitters, and friends' parents. Explain how important it is to keep foods with gluten away from your child. Teach older kids not to accept foods from others unless they're from someone who can make sure the food is gluten-free.

Help your child get used to a gluten-free diet. This can be a challenge, especially at first. But over time, you and your child will get to know which foods are OK and which aren’t, making it easier to find safe meals, snacks, and ingredients.

Let your child know that lots of other people also have celiac disease. Your doctor might be able to recommend a local support group. Online support groups and organizations can help too, like:

• Celiac Disease Foundation
• Beyond Celiac
• National Celiac Association

What Else Should I Know?

Gluten isn’t just in food — it can hide in everyday products too, including play dough and papier-mâché, makeup and skin care products (like lip balm and hand lotion), dental products, and some medicines. Read labels carefully and talk with your doctor if you have questions.