What is Celiac Disease?
DefinitionBy Mayo Clinic staff
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.
What are the Symptoms of Celiac Disease?
SymptomsBy Mayo Clinic staff
There are no typical signs and symptoms of celiac disease. Most people with the disease have general complaints, such as:
- Intermittent diarrhea
- Abdominal pain
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:
- Irritability or depression
- Stomach upset
- Joint pain
- Muscle cramps
- Skin rash
- Mouth sores
- Dental and bone disorders (such as osteoporosis)
- Tingling in the legs and feet (neuropathy)
Some indications of malabsorption that may result from celiac disease include:
- Weight loss
- Abdominal cramps, gas and bloating
- General weakness and fatigue
- Foul-smelling or grayish stools that may be fatty or oily
- Stunted growth (in children)
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.
What Causes Celiac Disease?
By Mayo Clinic staff
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.
What are the Risk Factors of Celiac Disease?
Risk factorsBy Mayo Clinic staff
Although celiac disease can affect anyone, it tends to be more common in people who have:
- Type 1 diabetes
- Autoimmune thyroid disease
- Down syndrome
- Microscopic colitis, particularly collagenous colitis
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.
What are the Complications of Celiac Disease?
ComplicationsBy Mayo Clinic staff
Left untreated, celiac disease can lead to several complications:
- Malnutrition. Untreated celiac disease can lead to malabsorption, which in turn can lead to malnutrition. This occurs in spite of what appears to be an adequate diet. Because vital nutrients are lost in the stool rather than absorbed in the bloodstream, malabsorption can cause a deficiency in vitamins and minerals, such as B-12, D, folate and iron, resulting in anemia and weight loss. Malnutrition can cause stunted growth in children and delay their development.
- Loss of calcium and bone density. With continued loss of fat in the stool, calcium and vitamin D may be lost in excessive amounts. This may result in a bone disorder called osteomalacia, a softening of the bone also known as rickets in children, and loss of bone density (osteoporosis), a condition that leaves your bones fragile and prone to fracture. In addition, lack of calcium absorption can lead to a certain type of kidney stone (oxalate stone).
- Lactose intolerance. Because of damage to your small intestine from gluten, foods that don't contain gluten also may cause abdominal pain and diarrhea. Some people with celiac disease aren't able to tolerate milk sugar (lactose) found in dairy products, a condition called lactose intolerance. If this is the case, you need to limit food and beverages containing lactose as well as those containing gluten. Once your intestine has healed, you may be able to tolerate dairy products again. However, some people may continue to experience lactose intolerance despite successful management of celiac disease.
- Cancer. People with celiac disease who don't maintain a gluten-free diet also have a greater chance of getting one of several forms of cancer, especially intestinal lymphoma and bowel cancer.
- Neurological complications. Celiac disease has also been associated with disorders of the nervous system, including seizures (epilepsy) and nerve damage (peripheral neuropathy).
Preparing for your doctors appointment.
Preparing for your appointmentBy Mayo Clinic staff
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
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance to prepare for any potential tests. One thing you won't want to do is to restrict your diet. If you stop eating foods that contain gluten prior to getting tested for celiac disease, you may alter the test results.
- Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, as well as any vitamins or supplements, that you're taking.
- Write down questions to ask your doctor.
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:
- What's the most likely cause of my symptoms?
- Are there other possible causes for my symptoms?
- What kinds of tests do I need? Do I need to do any special preparation for these tests?
- Are blood tests enough or do I need an endoscopy?
- Is my condition likely temporary or chronic?
- How do I treat celiac disease?
- Are there any other types of treatments available?
- How will I learn which foods contain gluten? Should I see a nutritionist?
- What foods can I eat?
- Are there any brochures or other printed material that I can take home with me? What Web sites do you recommend visiting?
- If I have celiac disease, will you also test for other conditions such as diabetes, thyroid problems or microscopic colitis?
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:
- When did you first begin experiencing symptoms?
- Have your symptoms been continuous, or occasional?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms? Does avoiding certain foods make you feel better?
- What, if anything, appears to worsen your symptoms? Does eating certain foods make you feel worse?
- Does anyone in your family have celiac disease?
- Do you have an autoimmune disease?
- Does anyone in your family have an autoimmune disease?
- Have you ever had surgery on your abdomen?
- Have you ever had pancreas problems, such as pancreatitis?
- Have you had any blistering or itchy skin rashes with your symptoms?
- Have you been told you have anemia and been given iron therapy?
How can I be tested for Celiac Disease?
Tests and diagnosisBy Mayo Clinic staff
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.
Is there a Cure or Treatment for Celiac Disease?
Treatments and drugsBy Mayo Clinic staff
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:
- Fresh meats, fish and poultry (not breaded or marinated)
- Most dairy products
- Gluten-free flours (rice, soy, corn, potato)
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:
- Cakes and pies
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.
Living the Gluten Free Lifestyle!
Lifestyle and home remediesBy Mayo Clinic staff
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:
- Select places that specialize in the kinds of foods you can eat. You may want to call the restaurant in advance and discuss the menu options and your dietary needs.
- Be a repeat customer. Visit the same restaurants so that you become familiar with their menus and the personnel get to know your needs.
- Seek and share ideas. Ask members of your support group for suggestions on restaurants that serve gluten-free food. If there are enough gluten-sensitive people in your community, it's likely that restaurant owners will try to satisfy your needs. Continue to share with the support group the names of any restaurants that add gluten-free foods to their menus.
- Follow the same practices you do at home. Select simply prepared or fresh foods and avoid all breaded or batter-coated foods, gravies and other foods with obvious or questionable ingredients.
Coping & Support.
Coping and supportBy Mayo Clinic staff
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:
- Gather information about celiac disease. Talk to your doctor, look for information on the Internet, and read books and pamphlets. Find cookbooks directed specifically toward a gluten-free diet. Being informed about your condition can help you take better charge of it.
- Seek out others with celiac disease or children with celiac disease. Talking to people who know what you're going through can be reassuring and informative. Your doctor may be able to refer you to a celiac disease support group in your community, or you may find one listed on the Internet or in your local paper.
- Don't hesitate to seek guidance. If you're having difficulty coming up with suitable menus, talk to a registered dietitian. A dietitian has extensive knowledge of the nutritional aspects of food and what you can and can't eat. He or she can help you think in more creative ways about your favorite foods.