Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, which is found in wheat, rye, barley, and possibly oats. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the small intestine. Specifically, tiny fingerlike protrusions, called villi, on the lining of the small intestine are lost. Nutrients from food are absorbed into the bloodstream through these villi. Without villi, a person becomes malnourished–regardless of the quantity of food eaten.
Because the body’s own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.
Celiac disease is a genetic disease, meaning that it runs in families. Sometimes the disease is triggered–or becomes active for the first time–after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.
What are the symptoms?
Celiac disease affects people differently. Some people develop symptoms as children, others as adults. One factor thought to play a role in when and how celiac appears is whether and how long a person was breastfed–the longer one was breastfed, the later symptoms of celiac disease appear and the more atypical the symptoms. Other factors include the age at which one began eating foods containing gluten and how much gluten is eaten.
Symptoms may or may not occur in the digestive system. For example, one person might have diarrhea and abdominal pain, while another person has irritability or depression. In fact, irritability is one of the most common symptoms in children.
Symptoms of celiac disease may include one or more of the following:
- recurring abdominal bloating and pain
- chronic diarrhea
- weight loss
- pale, foul-smelling stool
- unexplained anemia (low count of red blood cells)
- bone pain
- behavior changes
- muscle cramps
- delayed growth
- failure to thrive in infants
- pain in the joints
- tingling numbness in the legs (from nerve damage)
- pale sores inside the mouth, called aphthus ulcers
- painful skin rash, called dermatitis herpetiformis
- tooth discoloration or loss of enamel
- missed menstrual periods (often because of excessive weight loss)
Anemia, delayed growth, and weight loss are signs of malnutrition–not getting enough nutrients. Malnutrition is a serious problem for anyone, but particularly for children because they need adequate nutrition to develop properly.
Some people with celiac disease may not have symptoms. The undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms. However, people without symptoms are still at risk for the complications of celiac disease.
How is celiac disease diagnosed?
Diagnosing celiac disease can be difficult because some of its symptoms are similar to those of other diseases, including irritable bowel syndrome, Crohn’s disease, ulcerative colitis, diverticulosis, intestinal infections, chronic fatigue syndrome, and depression.
Recently, researchers discovered that people with celiac disease have higher than normal levels of certain antibodies in their blood. Antibodies are produced by the immune system in response to substances that the body perceives to be threatening. To diagnose celiac disease, physicians test blood to measure levels of antibodies to endomysium and tissue transglutaminase.
If the tests and symptoms suggest celiac disease, the physician may remove a tiny piece of tissue from the small intestine to check for damage to the villi. This is done in a procedure called a biopsy: the physician eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine, and then takes a sample of tissue using instruments passed through the endoscope. Biopsy of the small intestine is the best way to diagnose celiac disease.
Screening for celiac disease involves testing asymptomatic people for the antibodies (see above). Americans are not routinely screened for celiac disease. However, because celiac disease is hereditary, family members–particularly first-degree relatives–of people who have been diagnosed may need to be tested for the disease. About 10 percent of an affected person’s first-degree relatives (parents, siblings, or children) will also have the disease. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications.
What is the treatment?
The only treatment for celiac disease is to follow a gluten-free diet–that is, to avoid all foods that contain gluten. For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet, and the small intestine is usually completely healed–meaning the villi are intact and working–in 3 to 6 months. (It may take up to 2 years for older adults.)
The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve.
A small percentage of people with celiac disease do not improve on the gluten-free diet. These people often have severely damaged intestines that cannot heal even after they eliminate gluten from their diet. Because their intestines are not absorbing enough nutrients, they may need to receive intravenous nutrition supplements. Drug treatments are being evaluated for unresponsive celiac disease. These patients may need to be evaluated for complications of the disease.
The Gluten-Free Diet
A gluten-free diet means avoiding all foods that contain wheat (including spelt, triticale, and kamut), rye, barley, and possibly oats–in other words, most grain, pasta, cereal, and many processed foods. Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods, including bread and pasta. For example, instead of wheat flour, people can use potato, rice, soy, or bean flour. Or, they can buy gluten-free bread, pasta, and other products from special food companies.
Whether people with celiac disease should avoid oats is controversial because some people have been able to eat oats without having a reaction. Scientists are doing studies to find out whether people with celiac disease can tolerate oats. Until the studies are complete, people with celiac disease should follow their physician or dietitian’s advice about eating oats.
Plain meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like. Examples of foods that are safe to eat and those that are not are provided below.
The gluten-free diet is complicated. It requires a completely new approach to eating that affects a person’s entire life. People with celiac disease have to be extremely careful about what they buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out can be a challenge as the person with celiac disease learns to scrutinize the menu for foods with gluten and question the waiter or chef about possible hidden sources of gluten. Hidden sources of gluten include additives, preservatives, and stabilizers found in processed food, medicines, and mouthwash. If ingredients are not itemized, you may want to check with the manufacturer of the product. With practice, screening for gluten becomes second nature.
A dietitian, a health care professional who specializes in food and nutrition, can help people learn about their new diet. Also, support groups are particularly helpful for newly diagnosed people and their families as they learn to adjust to a new way of life.
The Gluten-Free Diet: Some Examples
Following are examples of foods that are allowed and those that should be avoided when eating gluten-free. Please note that this is not a complete list. People are encouraged to discuss gluten-free food choices with a physician or dietitian who specializes in celiac disease. Also, it is important to read all food ingredient lists carefully to make sure that the food does not contain gluten.
Substitutions for a Gluten-Free Diet
|Choose these foods/beverages||AVOID these foods/beverages|
|Breads/Cereals||Breads and rolls made from arrowroot, carob, corn, pea, potato, rice, sorghum, soybean, or tapioca starch or flour; pure corn tortillas, cornmeal, hominy, grits, popcorn; potatoes, potato chips; enriched rice, rice noodles, wild rice, rice cakes, rice wafers, puffed rice, Kellogg’s Rice Krispies, Kellogg’s Sugar Pops, Post’s Fruity and Chocolate Pebbles, or cream of rice.||Breads and rolls made from wheat, rye, oats, barley, buckwheat, durum, or graham; commercial mixes for biscuits, cornbread, muffins, pancakes, waffles; wheat germ; bran; bulgar; millet, triticale; crackers; pretzels; millet; melba toast; matzo; bread crumbs; pastry; pizza dough; regular noodles, spaghetti, macaroni, and other pasta; dumplings; cereals containing malt or malt flavoring derived from barley; cereals containing wheat, rye, oats, barley, bran, buckwheat or bulgar.|
|Fruits/Vegetables||All plain, fresh, frozen, canned or dried fruit; fruit juices; fresh frozen or canned vegetables; white and sweet potatoes; yams.||Any thickened or prepared fruits; any creamed or breaded vegetables; commercially prepared vegetables with cream sauce or cheese sauce.|
|Meats/ meatless protein||All fresh meat, poultry, fish, and shellfish; dried peas and beans; nuts; peanut butter; soy protein meat substitutes (without fillers); tofu.||Breaded fish or meats such as meatloaf, meat patties, croquettes, swiss steak; Any meat prepared with wheat, rye, oats, barley, or gluten stabilizers such as frankfurters, cold cuts, sandwich spreads, sausages, and canned meats.|
|Dairy||Whole, 2%, skim, dry, evaporated, or condensed milk; yogurt (except with cereal flavor); cream; American cheese, and all aged cheeses such as Cheddar, Swiss, and Parmesan.||Commercial chocolate milk and drinks; malted milk; non dairy creamers; cereal beverages such as Postum and Ovaltine; processed cheese foods and spreads.|
|Fats and oils||Butter, margarine, vegetable oils; homemade salad dressings.||Commercial salad dressing, and mayonnaise; gravy and cream sauces thickened with flour.|
|Sweets||Brown and white sugar; gelatin; jelly, jam, honey, molasses; fruit ice.||Prepared cake and cookie mixes; donuts and pastries; ice cream (with gluten stabilizers); ice cream cones; pies; bread puddings; pudding thickened with flour;|
|Beverages||Pure coffee; tea; carbonated beverages (except root beer); fruit drinks; mineral and carbonated waters; unfortified wines and rums, saki; vermouth; cognac.||Instant coffee; beverage mixes; nutritional supplements; alcoholic beverages made from cereal grains such as gin, whiskey, vodka; sherry, fortified wine, beer, ale, and malt liquor.|
|Condiments||Salt; pepper; herbs and spices; pure cocoa; food coloring; food flavoring extracts; monosodium glutamate.||Any condiment prepared with wheat, rye, oats, or barley such as some catsup, chili sauce, soy sauce, mustard, bottled meat sauces, horseradish, some dry seasoning mixes, pickles, steak sauce, distilled white vinegar; soup broth and boullion.|
Grains are used in processing many foods, so read labels carefully. The following tips will help you to find “hidden gluten” on food labels:
Where to look for ‘Hidden Gluten’
|Hydrolyzed Vegetable Protein (HVP) or Texturized Vegetable Protein||Only those from soy or corn|
|Flour or cereal products||Those from rice, corn potato or soy|
|Vegetable protein||Soy or corn|
|Malt or Malt flavoring||Those derived from corn|
|Modified Starch or Modified Food Starch||Arrowroot, corn, potato, tapioca, maize.|
|Vegetable Gum||Carob or locust bean; cellulose or sugar gum; gum acacia, arabic tragacanth or xanthan|
|Soy Sauce, Soy Sauce Solids||Those without wheat|
Sample Menu: Gluten-Free Diet
|6oz apple juice
1 cup puffed rice cereal
8 oz 1% milk
1 slice gluten free bread, toasted
1 tsp margarine
1 tbsp jelly
1 cup coffee
1 oz cream
2 tsp sugar
|2 oz roasted turkey breast
2 slices gluten free bread
2 tomato slices
1 medium apple
½ cup carrot sticks
1 cup bell pepper slices
8 oz 1% milk
|3 oz broiled pork chop
1 cup wild rice
1 cup boiled asparagus
1 cup fruited gelatin
1 slice gluten free bread
1 tsp margarine
12 oz iced tea
2 tsp sugar
|6 cups low-fat microwave popcorn
12 oz mineral water
This sample menu provides the following:
Fat: 64 grams
Protein: 80 grams
Sodium: 1273 mg
Carbohydrates: 286 grams
Potassium: 2779 mg
What are the complications of celiac disease?
Damage to the small intestine and the resulting problems with nutrient absorption put a person with celiac disease at risk for several diseases and health problems:
- Lymphoma and adenocarcinoma are types of cancer that can develop in the intestine.
- Osteoporosis is a condition in which the bones become weak, brittle, and prone to breaking. Poor calcium absorption is a contributing factor to osteoporosis.
- Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for untreated pregnant women with celiac disease because of malabsorption of nutrients.
- Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child’s normal growth and development. Children who are diagnosed and treated before their growth stops may have a catch-up period.
- Seizures, or convulsions, result from inadequate absorption of folic acid. Lack of folic acid causes calcium deposits, called calcifications, to form in the brain, which in turn cause seizures.
How common is celiac disease?
Celiac disease is the most common genetic disease in Europe. In Italy about 1 in 250 people and in Ireland about 1 in 300 people have celiac disease. It is rarely diagnosed in African, Chinese, and Japanese people.
An estimated 1 in 4,700 Americans have been diagnosed with celiac disease. Some researchers question how celiac disease could be so uncommon in the United States since it is hereditary and many Americans descend from European ethnic groups in whom the disease is common. A recent study in which random blood samples from the Red Cross were tested for celiac disease suggests that as many as 1 in every 250 Americans may have it. Celiac disease could be under diagnosed in the United States for a number of reasons:
- Celiac symptoms can be attributed to other problems.
- Many doctors are not knowledgeable about the disease.
- Only a handful of U.S. laboratories are experienced and skilled in testing for celiac disease.
More research is needed to find out the true prevalence of celiac disease among Americans.
Diseases Linked to Celiac Disease
People with celiac disease tend to have other autoimmune diseases as well, including
- dermatitis herpetiformis
- thyroid disease
- systemic lupus erythematosus
- type 1 diabetes · liver disease
- collagen vascular disease
- rheumatoid arthritis
- Sjögren’s syndrome
The connection between celiac and these diseases may be genetic.
- Dermatitis Herpetiformis
Dermatitis herpetiformis (DH) is a severe itchy, blistering skin disease caused by gluten intolerance. DH is related to celiac disease since both are autoimmune disorders caused by gluten intolerance, but they are separate diseases. The rash usually occurs on the elbows, knees, and buttocks. Although people with DH do not usually have digestive symptoms, they often have the same intestinal damage as people with celiac disease. DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody. DH is treated with a gluten-free diet and medication to control the rash, such as dapsone or sulfapyridine. Drug treatment may last several years.
Points to Remember
- People with celiac disease cannot tolerate gluten, a protein in wheat, rye, barley, and possibly oats.
- Celiac disease damages the small intestine and interferes with nutrient absorption.
- Treatment is important because people with celiac disease could develop complications like cancer, osteoporosis, anemia, and seizures.
- A person with celiac disease may or may not have symptoms.· Diagnosis involves blood tests and biopsy.
- Because celiac disease is hereditary, family members of a person with celiac disease may need to be tested.
- Celiac disease is treated by eliminating all gluten from the diet. The gluten-free diet is a lifetime requirement.
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