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Editor’s Note: This is the first article in a series looking at common food sensitivities (or intolerances) and allergies in kids.
Celiac disease is an autoimmune disorder that affects millions of children in the United States. It’s caused by an intolerance to gluten, which is a broad term for the proteins found in wheat, rye, and barley and other grains derived from them.
In kids with celiac disease, gluten damages villi, the finger-like projections in the small intestine responsible for absorbing nutrients from food. When the villi are damaged, the body can’t absorb nutrients the body needs to grow. If that happens, a child can become malnourished.
Doctors don’t know for sure what triggers the immune system to react to gluten in people who have celiac disease. There’s no cure, but there are ways to minimize symptoms and avoid damage to the intestines.
The causes of celiac disease are unknown. It does, however, tend to run in families, so if there is a family history of celiac disease, a 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 no symptoms. Celiac disease that goes undiagnosed in adults for a long time can lead to serious health problems.
Symptoms of celiac disease can happen at any time in a child’s life. Some kids have symptoms the first time they are exposed to gluten, while others develop symptoms after safely consuming gluten products for years.
Infants may not gain weight and height as expected (a condition called failure to thrive). Older kids can have diarrhea, abdominal pain and bloating, weight loss, fatigue, or painful skin rashes, especially around the elbows, buttocks, and knees. Some people who have celiac disease have no symptoms at all.
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 given general anesthesia for the procedure.
If your child is diagnosed with celiac disease, the doctor will guide you 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 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, it’s wise to stay away from foods that contain these gluten-related ingredients:
It’s generally safe for kids with celiac disease to eat oats that 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 to understand by requiring companies to identify other components, such as hidden ingredients and barley and rye.
Here are some things 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 well 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.
What experts know about celiac disease is developing rapidly. To make sure you 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 — other caregivers, 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.
Symptoms get better quickly after gluten is eliminated from the diet and kids make the transition to gluten-free eating. But kids who have mild or no symptoms may have a more difficult time with making and keeping 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.
It may be difficult for your child to adapt to a gluten-free diet and, at first, it can 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.