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.
Gluten is the common term for a group of proteins found in wheat (durum, kamut, semolina, or spelt), rye, barley triticale, and farina. Grains are so common in our diet that gluten is second only to sugar as our most commonly consumed ingredient.
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.
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, brother, or sister 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.
In the past, experts believed celiac disease to be somewhat rare and it was usually diagnosed only in very young children. It is estimated that 1 in 133 people in the United States has the condition. Many people who have celiac disease don't know that they have it.
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. People with the disease may feel tired, and they could be irritable or depressed. Some have skin rashes and mouth sores. Teens with undiagnosed celiac disease may go through puberty late.
Sometimes a person who has celiac disease may not show any symptoms until he or she goes through an emotionally or physically stressful event, such as going away to college, illness, or an injury or pregnancy.
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 a person has celiac disease, he or she will probably order a blood test as a first step in diagnosing the disease. If the results of the blood test show the person has 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.
A biopsy involves taking a sample of tissue and sending it to a laboratory for testing. In the case of celiac disease, doctors take this tissue sample from the small intestine by inserting a long, thin tube called an endoscope through the mouth and stomach into the small intestine. This procedure doesn't hurt and a person is always moderately sedated or given general anesthesia. In some cases, a doctor may put a person to sleep with general anesthesia during the procedure.
Once a doctor has a diagnosis, he or she will help treat the condition. Although there is no cure for celiac disease, it 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, people with celiac disease 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 a person with celiac disease starts eating gluten again.
The good news about celiac disease is that the foods mentioned at the beginning of this article, including 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 the foods you eat.
Here are four things you should do if you have celiac disease:
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. 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 and using separate jams and spreads for people with celiac disease is a great idea. 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. Or if machinery is inadequately cleaned between the production of gluten-containing and gluten-free products, contamination is a possibility. In North America it is recommended that people with celiac disease avoid oats because of the high likelihood they may be contaminated with other grains that contain gluten.
Know the foods and ingredients to avoid. These include:
A new law now helps make reading labels for gluten a bit easier. Starting in January 2006, 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. 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.
Most grocery stores carry a few gluten-free products these days. You may 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. There are lots of support groups, cookbooks, and Websites 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.