Celiac disease is a digestive condition triggered by consumption of the protein gluten, which is found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye. If you have celiac disease and eat foods containing gluten, an immune reaction occurs in your small intestine, causing damage to the surface of your small intestine and an inability to absorb certain nutrients.
Eventually, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment. This can lead to other illnesses and stunted growth in children.
No treatment can cure celiac disease. However, you can effectively manage celiac disease through changing your diet.
There are no typical signs and symptoms of celiac disease. Most people with the disease have general complaints, such as:
Sometimes people with celiac disease may have no gastrointestinal symptoms at all. Celiac disease symptoms can also mimic those of other conditions, such as irritable bowel syndrome, gastric ulcers, Crohn's disease, parasite infections, anemia, skin disorders or a nervous condition.
Celiac disease may also present itself in less obvious ways, including:
Some indications of malabsorption that may result from celiac disease include:
Another gluten-related condition
Dermatitis herpetiformis is an itchy, blistering skin disease that also stems from gluten intolerance. The rash usually occurs on the elbows, knees and buttocks. Dermatitis herpetiformis can cause significant intestinal damage identical to that of celiac disease. However, it may not produce noticeable digestive symptoms. This disease is treated with a gluten-free diet, in addition to medication to control the rash.
When to see a doctor
If you notice or experience any of the signs or symptoms common to celiac disease, see your doctor. If someone in your family is known to have celiac disease, you may need to be tested.
Seek medical attention for a child who is pale, irritable, fails to grow, and who has a potbelly, flat buttocks and malodorous, bulky stools. Other conditions can cause these same signs and symptoms, so it's important to talk to your doctor before trying a gluten-free diet.
Also known as celiac sprue, nontropical sprue and gluten-sensitive enteropathy, celiac disease occurs in people who have a susceptibility to gluten.
Normally, your small intestine is lined with tiny, hair-like projections called villi. Resembling the deep pile of a plush carpet on a microscopic scale, villi work to absorb vitamins, minerals and other nutrients from the food you eat. Celiac disease results in damage to the villi. Without villi, the inner surface of the small intestine becomes less like a plush carpet and more like a tile floor, and your body is unable to absorb nutrients necessary for health and growth. Instead, nutrients such as fat, protein, vitamins and minerals are eliminated with your stool.
The exact cause of celiac disease is unknown, but it's often inherited. If someone in your immediate family has it, chances are 5 to 15 percent that you may as well.
Many times, for reasons that aren't clear, the disease emerges after some form of trauma: an infection, a physical injury, the stress of pregnancy, severe stress or surgery.
Although celiac disease can affect anyone, it tends to be more common in people who have:
Additionally, certain genes — HLA-DQ2 and DQ8 — are associated with an increased risk of celiac disease. But, experts also suspect that other, as yet unknown, genes also play a role in the development of celiac disease.
Left untreated, celiac disease can lead to several complications:
Although you'll probably see your family doctor or general practitioner first, you'll likely be referred to a gastroenterologist for further testing and treatment.
Because appointments can be brief and there's often a lot of ground to cover, it's a good idea to be well prepared. Here's some information to help you get ready for your appointment, and what to expect from your doctor.
What you can do
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For celiac disease, some basic questions to ask your doctor include:
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
Celiac disease may be much more common in the United States than previously believed. Part of the reason for the previous underdiagnosis of celiac disease may be because the disorder resembles several other conditions that can cause malabsorption. In addition, specific blood tests now allow for diagnosis of people with celiac disease who have very mild signs and symptoms or none at all.
People with celiac disease carry higher than normal levels of certain antibodies (anti-gliadin, anti-endomysium and anti-tissue transglutaminase). Antibodies are specialized proteins that are part of your immune system and work to eliminate foreign substances in your body. In people with celiac disease, their immune systems may be recognizing gluten as a foreign substance and producing elevated levels of antibodies to get rid of it.
A blood test can now detect high levels of these antibodies and is used to initially detect people who are most likely to have the disease and who may need further testing. To confirm the diagnosis, your doctor may need to microscopically examine a small portion of intestinal tissue to check for damage to the villi. To do this, your doctor inserts a thin, flexible tube (endoscope) through your mouth, esophagus and stomach into your small intestine and takes a sample of intestinal tissue.
A trial of a gluten-free diet also can confirm a diagnosis, but it's important that you not start such a diet before seeking a medical evaluation. Doing so may change the results of blood tests and biopsies so that they appear to be normal.
Celiac disease has no cure, but you can effectively manage the disease through changing your diet.
Once gluten is removed from your diet, inflammation in your small intestine will begin to subside, usually within several weeks, though you may start to feel better in just a few days. If your nutritional deficiencies are severe, you may need to take vitamin and mineral supplements recommended by your doctor or dietitian to help correct these deficiencies. Complete healing and regrowth of the villi may take several months in younger people and as long as two to three years in older people.
Avoiding gluten is essential
To manage the disease and prevent complications, it's crucial that you avoid all foods that contain gluten. Even a small amount of gluten is enough to cause symptoms and complications — that means all foods or food ingredients made from many grains, including wheat, barley and rye. This includes any type of wheat (including farina, graham flour, semolina and durum), barley, rye, bulgur, Kamut, kasha, matzo meal, spelt and triticale.
Amaranth, buckwheat and quinoa are gluten-free as grown, but may be contaminated by other grains during harvesting and processing, so be sure the label says gluten-free or manufactured in a gluten-free facility. Cross-contamination may also occur if gluten-free products are prepared in unwashed bowls previously containing gluten products. Oats may not be harmful for most people with celiac disease, but oat products are frequently contaminated with wheat, so it's best to avoid oats as well.
The question of whether people eating a gluten-free diet can consume pure oat products remains a subject of scientific debate. Difficulties in identifying the precise components responsible for the immune response and the chemical differences between wheat and oats have contributed to the controversy.
Your doctor may recommend that you meet with a dietitian who can instruct you on a gluten-free diet. There are still many basic foods allowed in a gluten-free diet. These include:
Most foods made from grains contain gluten. Avoid these foods unless they're labeled as gluten-free or made with corn, rice, soy or other gluten-free grain:
Many other foods have ingredients that contain gluten. Grains containing gluten may be used in food additives, such as malt flavoring, modified food starch and others. Other sources of gluten that might come as a surprise include medications and vitamins that use gluten as a binding agent, lipstick, postage stamps and contamination of gluten-free foods with foods containing gluten. Cross-contamination may occur anywhere ingredients come together, such as on a cutting board. You may also be exposed to gluten by using the same utensils as others, such as a bread knife, or by sharing the same condiment containers.
Gluten-free products abound
Fortunately for bread and pasta lovers with celiac disease, there are an increasing number of gluten-free products on the market. If you can't find any at your local bakery or grocery store, check with a celiac support group or the Internet for availability. In fact, there are gluten-free substitutes for many gluten-containing foods.
Identifying gluten-free foods can be difficult. Because a gluten-free diet needs to be strictly followed, you may wish to consult a registered dietitian who is experienced in teaching the gluten-free diet. A dietitian can advise you on how to best maintain the nutritional quality of your diet and help you come up with gluten-free alternatives. She or he will also help you identify your need for vitamin, calcium and mineral supplements. Revisiting the dietitian over the years will help keep you up to date on newer food products as well as answer your questions.
What if you eat gluten?
If you accidentally eat a product that contains gluten, you may experience abdominal pain and diarrhea. Some people experience no signs or symptoms after eating gluten, but this doesn't mean it's not hurting them. Even trace amounts of gluten in your diet can be damaging, whether or not they cause signs or symptoms.
Most people with celiac disease who follow a gluten-free diet have a complete recovery. Rarely, people with severely damaged small intestines don't improve with a gluten-free diet. When diet isn't effective, treatment often includes medications to help control intestinal inflammation and other conditions resulting from malabsorption.
Because celiac disease can lead to many complications, people who don't respond to dietary changes need frequent monitoring for other health conditions.
Following a gluten-free diet may leave you angry and frustrated, understandably so. But with time, patience and a little creativity, you'll find there are many foods that you can still eat and enjoy. Following are some tips to help you on your way to a safe and healthy diet.
Read food labels
Food labels are your lifeline to better health. Always read the food label before you purchase any product. Some foods that may appear acceptable, such as rice or corn cereals, may contain gluten. What's more, a manufacturer may change a product's ingredients at any time. A food that was once gluten-free no longer may be. Unless you read the label every time you shop, you won't know this.
Call the manufacturer
If you can't tell by the label if a food contains gluten, don't eat it until you check with the product's manufacturer. Some support groups produce a gluten-free shopper's guide that can save you time at the market, although it may not be as current as that obtained from the manufacturer.
Don't be afraid to eat out
Though preparing your own meals is the easiest way to monitor your diet, this doesn't mean you can't eat out. For an enjoyable dining experience, remember the following advice:
Living with celiac disease isn't always easy. Every day can be a challenge. Over time, however, managing your disease will become second nature. In the meantime, these suggestions may help you manage more easily: