Celiac Disease

What Is Celiac Disease?

Celiac disease is an autoimmune disorder. It happens when someone has a food intolerance to gluten. Gluten (GLOOT-in) is the general name of proteins found in wheat, rye, barley, and other grains.

In celiac (SEE-lee-ak) disease, the body can’t absorb important nutrients. If that happens, a person can become malnourished.

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 intestines.

What Are the Signs & Symptoms of Celiac Disease?

Celiac disease — also known as celiac sprue, gluten-sensitive enteropathy, and non-tropical sprue — can cause a wide variety of symptoms. Infants may not gain weight and length as expected, a condition called failure to thrive. Older kids can have:

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

Some people don’t have any symptoms.

Symptoms 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 consuming gluten products.

A baby might show the first signs of celiac disease soon after starting solid foods such as cereal. Signs might include diarrhea, stomach pain, and not gaining weight at a healthy pace.

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

What Causes Celiac Disease?

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

The cause of celiac disease isn’t known. It tends to run in families, so a child with a family history of the condition may be more likely to get it. It also can happen along with other disorders, such as Down syndrome, Williams syndrome, type 1 diabetes, and autoimmune thyroid disorders.

How Is Celiac Disease Diagnosed?

Diagnosing celiac disease usually starts with a blood test to look for antibodies to gluten and other proteins in the intestine’s lining. Antibodies are proteins the immune system makes that recognize and get rid of germs and other things it sees as threats. They usually stay in our bodies in case we have to fight that germ or problem again. If the blood test finds high levels of antibodies to gluten, the doctor probably will do a biopsy of the small intestine to send for testing.

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. A child usually is sedated or under general anesthesia to sleep through the procedure.

If a child is diagnosed with celiac disease, their siblings, parents, and grandparents 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.

How Is Celiac Disease Treated?

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

Dietary Changes

If your child has celiac disease, the doctor will guide you on which foods your child can eat and which to avoid. These changes will have a big impact on your family's everyday life and your child's diet. So the doctor may suggest that you meet with a dietitian 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 eight 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 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 jams, spreads, or condiments if people aren't careful to use a fresh knife or utensil each time. Keeping condiments in squeezable bottles and using separate butter, jams, and spreads for people with celiac disease 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 products, 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 Get Something With Gluten?

Even with these precautions, your child may ingest gluten at some point. That's OK — a single small exposure may cause mild inflammation in the gut, but probably won't lead to immediate symptoms. Normally, the lining of small intestine completely renews itself every 3–4 days. So after a single incident, new cells quickly replace damaged ones. Repeated exposure to gluten, though, will lead to ongoing damage of the intestinal lining.

How Can Parents Help?

If your child has celiac disease, tell the other adults in your child's life — caregivers, teachers, school nurses, camp counselors, babysitters, and friends' parents — and explain the importance of keeping foods with gluten away from your child. Teach older kids not to accept foods from others unless they're from someone who can ensure the food is gluten-free.

Help your child adapt 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 are not, making it easier to find safe meals, snacks, and ingredients.

Reassure your child that they’re not alone with these dietary problems. Your doctor might be able to recommend a local support group. Online support groups and organizations can help too, such as:

• Celiac Disease Foundation
• Beyond Celiac
• National Celiac Association