Celiac Disease

Causes

The causes of celiac disease are unknown. It has been linked to other health conditions, including Down syndrome, Williams syndrome, thyroid disorder, and selective immunoglobulin IgA deficiency.

Celiac disease tends to run in families, so if there is a family history of celiac disease, your child may have a higher risk of developing it. If one child is diagnosed with celiac disease, his or her siblings, parents, and grandparents should be tested too, as they may have the disease but be symptom free. And celiac disease that goes undiagnosed in adults for a long time can lead to serious health problems.

Diagnosis

Diagnosing celiac disease usually begins with a simple blood test that measures the level of antibodies to gluten and other proteins in the lining of the intestine. If high levels of these antibodies are found, the doctor will likely order a biopsy of the small intestine and send it to a laboratory for testing.

Doctors take this tissue sample by inserting a long, thin tube called an endoscope through the mouth and stomach into the small intestine. A child is usually moderately sedated or put to sleep under general anesthesia for the procedure.

Dietary Changes

If celiac disease is diagnosed, the doctor will give you guidance on which foods your child can eat and which to avoid. Because these changes will greatly affect your family's everyday life and your child's diet, the doctor may suggest that you meet with a nutritionist for additional advice.

Wheat, barley, rye, and related grains should be eliminated from your child's diet. But because there's no law requiring food manufacturers to list gluten on food labels, this can be difficult. In general, if your child has celiac disease, it's wise to stay away from foods that contain these gluten-related ingredients:

• bouillons and broths
• breading (such as the coating on breaded chicken cutlets, etc.)
• brown rice syrup (often made from barley)
• cake flour (made from wheat)
• caramel color (occasionally made from barley)
• communion wafers
• couscous
• creamed or breaded vegetables
• dextrin (a rare ingredient that may be made from wheat; maltodextrin is OK)
• dry roasted nuts (processing agents may contain wheat flour or flavorings)
• fried chicken
• french fries (if they've been coated in flour)
• gravies and sauces (including some tomato and meat sauces)
• imitation bacon, crab, or other seafood
• luncheon and processed meats
• malt or malt flavoring (usually made from barley)
• marinades
• matzo
• modified food starch (most food manufacturers now specify the source of this ingredient; e.g., modified cornstarch, which is OK, or modified wheat starch, which is not)
• nondairy creamer
• pastas
• salad dressings
• seasonings (pure spices are OK, but check seasoning mixes for gluten-containing additives)
• some herbal teas and flavored coffees
• soup mixes and canned soups
• soy sauce and soy sauce solids (they may be fermented with wheat; don't use them unless you verify they're OK with a dietitian)
• spreads, soft cheeses, and dips
• stuffings
• thickeners
• udon noodles
• wheat-free products (many wheat-free cookies and breads contain barley or rye flour, which contain gluten, and other gluten-containing ingredients)
• yogurts with wheat starch

It is generally safe for a child with celiac disease to consume oats, as long as the oats come from an uncontaminated source. That means that the oats have been processed in a mill that doesn't process grains that contain gluten on the same equipment. The label on the package of oats should clearly state if that's the case.

To avoid gluten — and prevent triggering your child's celiac symptoms — it's important to carefully read the labels of all foods before you buy them or let your child consume them. And help your child learn to do it too. When in doubt, the safest thing to do is to assume the product contains gluten and leave it out.

In the United States, all foods must be clearly labeled if they contain any of the top eight food allergens, including wheat. However, wheat free doesn't mean gluten free as some wheat-free products may have gluten-containing grains like barley and rye in them. Lawmakers are working to make labels easier for people with celiac disease by requiring companies to identify other components, such as hidden ingredients and barley and rye.

Eating Away From Home

People with celiac disease aren't limited to eating at home. With experience and knowledge, you'll be able to figure out which dishes at restaurants or friends' homes contain gluten. Your local support group may be able to provide a list of restaurants where the chef is familiar with the gluten-free diet. Some restaurants now offer gluten-free dishes on their menus — be sure to ask.

Sometimes, no matter how well prepared you are, you might not be able to find out if a particular food is gluten free. When in doubt, order something else for your child to eat!

Here are some tips to remember when choosing foods:

Start with the foods your child can eat. Foods and ingredients that someone with celiac disease can eat and use in cooking include: foods made with the flours of corn, rice, buckwheat, sorghum, arrowroot, garbanzo beans (chickpeas), quinoa, tapioca, teff, and potato (provided other ingredients in your recipe do not contain gluten). Also OK are all plain meats, fish, chicken, legumes, nuts, seeds, oils, milk, cheese, eggs, fruits, and vegetables.

Be on the lookout for possible cross-contamination. Even when eating or preparing foods that are gluten free, if these foods come into contact with foods that contain gluten, there is a risk of 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 jams and spreads for people with celiac disease is a great idea. It's also wise to keep a separate toaster for gluten-free bread.

If you bake with products that contain gluten, thoroughly clean appliances, utensils, and work surfaces before preparing gluten-free products. Remember to wash your hands thoroughly and often when you're cooking and preparing food.

In restaurants, tell the server or the kitchen staff about your child's condition and make sure that they know that it's important that your child's food not contain any gluten or related ingredients.

Most grocery stores 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. It's not a good idea to use gluten-free products from bulk food bins because of the risk of cross-contamination.

Even if you take precautions, chances are your child may accidentally ingest gluten at some point. That's OK — a single small amount of gluten ingestion may cause mild inflammation in the gut but probably won't cause any immediate symptoms. Normally, the lining of small intestine completely renews itself every 3-4 days, so after a single incident the damaged cells are quickly replaced with new ones. However, repeated exposure to gluten will lead to ongoing damage of the intestinal lining.

Helping Your Child Cope

What experts know about celiac disease is developing so rapidly that many books and websites are out of date. To make sure you always have the most current and accurate information, consider joining one of the national celiac organizations. There are even gluten-free summer camps and special support groups just for kids and teens.

If your child has celiac disease, it's important to educate the other adults in your child's life — teachers, school nurses, camp counselors, babysitters, and friends' parents — about the condition, and to explain the importance of keeping foods with gluten away from your child. Teach older kids not to accept foods they're offered unless they're from someone who is known to be diligent about ensuring the food is gluten free.

It may be difficult for your child to adapt to a gluten-free diet and, at first, it may be challenging for you to make all the right accommodations. But over time, you and your child will get to know which foods are safe and which are off-limits, making it easier to find meals, snacks, and ingredients that won't cause celiac symptoms.

Many kids with symptoms who are diagnosed with celiac disease feel better quickly after gluten is eliminated from their diet and make a smooth transition to gluten-free eating. But when symptoms are mild or absent, kids may have a more difficult time with dietary changes. In such cases, strong family support is especially important.

It also helps to find support groups, many of which have special events for kids to help them realize they're not alone with these dietary problems. Talk to your doctor about finding such resources in your community.

Reviewed by: J. Fernando del Rosario, MD
Date reviewed: September 2012
Originally reviewed by: Karoly Horvath, MD, PhD