Birthday cake. Pizza. Chocolate chip cookies. For people with celiac disease, a lifelong disorder of the digestive system, these foods aren't always the treats that most people think they are. Why? Because they usually contain a type of protein called gluten, which causes problems for people with celiac disease.
What Is Gluten?
Gluten is the common term for a group of proteins found in wheat, rye, barley, and grains derived from them or having different names like triticale, durum, kamut, semolina, and spelt. Grains are so common in our diet that gluten is second only to sugar as our most commonly consumed ingredient.
What Is Celiac Disease?
The digestive system is the set of organs that digest food and absorb the important nutrients the body needs to stay healthy and grow. One important part of the digestive system is the small intestine, which is lined with millions of microscopic, finger-like projections called villi (pronounced: vih-lye). Nutrients are absorbed into the body through the villi.
People who have celiac (pronounced: see-lee-ak) disease have a disorder that makes their bodies react to gluten. When they eat gluten, an immune system reaction to the protein gradually damages the villi in the small intestine. When the villi are damaged, the body is unable to absorb the vitamins, minerals, and other nutrients it needs to stay healthy. People with celiac disease are therefore at risk of malnutrition and can develop anemia (a decreased number of red blood cells due to lack of iron) or osteoporosis (brittle bones from lack of calcium).
The body's inability to absorb nutrients can also mean that young people with untreated celiac disease may not grow properly and may have weight loss and fatigue. In addition, people who have celiac disease may be prone to developing other diseases, such as thyroid disease, type 1 diabetes, and gastrointestinal cancer.
What Causes It?
Experts don't know exactly why people get celiac disease, which is also called gluten intolerance, celiac sprue, nontropical sprue, or gluten-sensitive enteropathy.
The disease has some genetic background, which means that it may run in families. Just like eye or hair color, people inherit the genes that make them more likely to get celiac disease from their parents and grandparents. If an immediate family member (such as a parent or a sibling) has celiac disease, there's about a 5% to 10% chance that you could have it, too. Celiac disease affects people of all heritages and backgrounds.
It is estimated that 1 in 133 people in the United States has the condition, although many don't know that they do.
Signs and Symptoms
It's important to diagnose celiac disease early before it causes damage to the intestine. But because it's easy to confuse the symptoms with other intestinal disorders, such as irritable bowel syndrome or lactose intolerance, teens with celiac disease may not know they have it.
Some common symptoms of celiac disease are diarrhea, abdominal pain and bloating, and weight loss. Someone with the disease may feel tired and could be irritable or depressed. Some have skin rashes and mouth sores. Teens with undiagnosed celiac disease may go through puberty late.
Someone might not show any symptoms until going through an emotionally or physically stressful event, such as going away to college, illness, or an injury or pregnancy.
How Is Celiac Disease Diagnosed?
Because the symptoms of celiac disease are similar to some other digestive conditions, only a doctor can tell for sure if a person has the disease. First the doctor will do a medical history, where he or she will ask you about any concerns and symptoms you have, your past health, your family's health, any medications you're taking, any allergies you have, and other issues. In addition to doing a medical history, your doctor will do a physical examination.
If a doctor suspects someone has celiac disease, ordering a blood test is usually a first step in diagnosing the disease. If the results of the blood test show a high level of antibodies to gluten and to certain other proteins in the intestinal lining — a sign that the person could have celiac disease — then the doctor may order a biopsy of the small intestine to confirm the diagnosis.
In the case of celiac disease, doctors take a tissue sample from the small intestine by inserting a long, thin tube called an endoscope through the mouth and stomach into the small intestine. A person is fully or moderately sedated during this procedure. In many cases, doctors use general anesthesia to put the patient to sleep. The sample is sent to a laboratory for testing.
How Is It Treated?
Once celiac disease is diagnosed, a doctor will help treat it. Although there is no cure, celiac disease can be managed successfully by following a gluten-free diet. People with celiac disease need to follow this diet for life. Because gluten can be found in everything from breakfast cereals to prepared luncheon meats, they need to be very aware of what's in the foods they eat.
If you've been diagnosed with celiac disease, a doctor or dietitian who specializes in celiac disease can help you develop an eating plan that works with your lifestyle.
Luckily, the small intestine can heal. Although this process may take up to a year, many people start to feel better after just a few days on a gluten-free diet. But feeling better doesn't mean that people with celiac disease can resume eating foods containing gluten. Because the genes that cause the disease are present in the body and the immune system continues to react to gluten, the symptoms and problems will return if someone with celiac disease starts eating gluten again.
Taking Care of Yourself
The good news about celiac disease is that many favorite foods, like birthday cake and pizza, can be prepared without gluten. So if you have celiac disease, you can still find ways to enjoy most of your favorite foods — you just need to do some research and be aware of what's in them.
Here are four things you should do if you have celiac disease:
- Learn to read labels to find out if a food contains gluten.
- Learn which foods are gluten free.
- Find alternatives to wheat, barley, and rye flours and other gluten-containing grain ingredients for your recipes.
- Find a support group where you and other people with the condition can share up-to-date information.
While a law requires the labeling of wheat-free products, be aware that "wheat free" doesn't necessarily mean "gluten free," as wheat-free products may have barley and rye (gluten-containing grains) in them.
Eating Away From Home
If you have celiac disease, you don't have to limit yourself to eating at home. With experience and knowledge, you'll be able to figure out which dishes at restaurants or friends' homes contain gluten. You may even have some restaurants in your town that offer gluten-free dishes on their menus.
Your local support group might have a list of restaurants where the chef is familiar with the gluten-free diet. Ask at restaurants or consult your dietitian or a celiac disease support group for this type of information.
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, leave it out!
Here are some tips to remember when choosing foods for celiac disease:
Start with the foods you can eat. Foods and ingredients that you 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). You can also eat all plain meat, 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, you run the risk of something 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 or using separate jams and spreads is a great idea for people with celiac disease. It's also a good idea to keep a separate toaster for gluten-free bread.
If someone in your family bakes with products that contain gluten, you need to thoroughly clean appliances, utensils, and work surfaces before preparing your gluten-free products. Remember to wash your hands thoroughly and often.
If the food manufacturing environment is not a dedicated gluten-free environment, there is the potential for contamination. For example, gluten-free bread prepared in a bakery that also produces regular products may be contaminated. This can happen when machinery is not properly cleaned between the production of gluten-containing and gluten-free products. Some manufacturers are now producing products in gluten-free environments.
Foods and Ingredients to Avoid
A U.S. law helps make checking labels for gluten a bit easier. All food labels are required to clearly state if the food contains any of the top eight food allergens, including wheat. However, wheat free doesn't mean gluten free. Lawmakers are also 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.
Still, it helps to know the foods to avoid. These include:
- beer and other grain-based alcohol products
- bouillons and broths
- breading (such as the coating on breaded chicken cutlets, etc.)
- brown rice syrup (frequently made from barley)
- cake flour (made from wheat)
- caramel color (occasionally made from barley)
- communion wafers
- creamed or breaded vegetables
- dextrin (a rare ingredient, which may be made from wheat; maltodextrin is OK for people with celiac disease)
- 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)
- modified food starch (most food manufacturers will now specify the source of this ingredient; e.g., modified cornstarch, which is OK, or modified wheat starch, which is not)
- nondairy creamer
- 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 eat them unless you verify they're OK with a dietitian)
- spreads, soft cheeses, and dips
- udon noodles
- wheat-free products (wheat free does not mean gluten free; many wheat-free cookies and breads contain barley or rye flour, which contains gluten and other gluten-containing ingredients)
- yogurts with wheat starch
Finding Gluten-Free Foods and Ingredients
Most grocery stores carry some gluten-free products these days. You might be able to find gluten-free bread, cereal, baking mixes, cookies, and crackers at your local market. For a wider selection, make a trip to a health food store. Be aware that lots of natural markets and health-food stores keep foods in bulk bins. It's not a good idea to use even gluten-free products from these bins because the risk of cross-contamination is very high.
Many specialty shops online also sell a range of gluten-free products, such as bread, pizza crusts, and pastas. Many regular and online shops even sell gluten-free flour blends that you can use to make your own pancakes and waffles, pizza dough, cookies, and brownies.
Eating a gluten-free diet is a lifelong commitment. But if you have celiac disease, you are not alone. Lots of support groups, cookbooks, and websites are dedicated to living a gluten-free life. A word of caution, though: What experts know about celiac disease is developing so rapidly that many books and sites 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.
Reviewed by: J. Fernando del Rosario, MD
Date reviewed: September 2012
Originally reviewed by: Karoly Horvath, MD, PhD