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, found in wheat, rye, barley, and possibly oats due to cross-contamination. Gluten is found mainly in foods, but is also found in products we use every day and even some medicines.
When people with celiac disease eat foods or ingest products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy 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 diseaseis also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.Celiac disease is a genetic disease, meaning 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.
Dermatitis herpetiformis (DH) is a severe itchy, blistering skin condition found in people with celiac disease. The rash usually occurs on the elbows, knees, and buttocks. Unlike other forms of celiac disease, the range of intestinal abnormalities in DH is highly variable, from minimal to severe. Only about 20 percent of people with DH have intestinal symptoms of celiac disease. To diagnose DH, the doctor will test the person's blood for autoantibodies related to celiac disease and will biopsy the person's skin. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need to have an intestinal biopsy. Both the skin disease and the intestinal disease respond to gluten-free diet and recur if gluten is added back into diet. In addition, the rash symptoms can be controlled with medications such as dapsone (4',4'diamino-diphenylsuphone). However, dapsone does not treat the intestinal condition and people with DH should also maintain a gluten-free diet.
Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.
Symptoms of celiac disease may include one or more of the following:
A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. Anemia, delayed growth, and weight loss are signs of malnutrition: The body is just not getting enough nutrients. Malnutrition is a serious problem for children because they need adequate nutrition to develop properly.
Researchers are studying the reasons celiac disease affects people differently. Some people develop symptoms as children, others as adults. Some people with celiac disease may not have symptoms or may be unaware of symptoms. The undamaged part of their small intestine may not be able to absorb enough nutrients to prevent symptoms. The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten containing foods one eats are three factors thought to play a role in when and how celiac appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.
Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn's disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly under diagnosed or misdiagnosed.
Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Autoantibodies are proteins that react against the body's own molecules or tissues. To diagnose celiac disease, physicians will usually test blood to measure levels of Immunoglobulin A (IgA) anti-tissue transglutaminase (tTGA) or IgA anti-endomysium antibodies (AEA).
Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present.
If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes tiny pieces of tissue from the small intestine to check for damage to the villi. To obtain the tissue samples, the doctor eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine. Using instruments passed through the endoscope, the doctor then takes the samples.
Screening for celiac disease involves testing for the presence of antibodies in the blood in people without symptoms. Americans are not routinely screened for celiac disease. Testing for celiac-related antibodies in children less than 5 years old may not be reliable. However, since celiac disease is hereditary, family members, particularly first-degree relatives-meaning parents, siblings, or children of people who have been diagnosed-may wish to be tested for the disease. About 5 to 15 percent of an affected person's first-degree relatives will also have the disease. About 3 to 8 percent of people with type 1 diabetes will have biopsy-confirmed celiac disease and 5 to 10 percent of people with Down syndrome will be diagnosed with celiac disease.
The only treatment for celiac disease is to follow a gluten-free diet. When a person is first diagnosed with celiac disease, the doctor may ask the person to work with a dietitian on a gluten-free diet plan. A dietitian is a health care professional who specializes in food and nutrition. Someone with celiac disease can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.
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. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Completely healed means a person now has villi that can absorb nutrients from food into the bloodstream.
In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person's age at diagnosis, some problems will not improve, such as delayed growth and tooth discoloration.
Some people with celiac disease show no improvement on the gluten-free diet. The condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietitian who is skilled in educating patients about the gluten-free diet is essential to achieve best results.
Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to directly receive nutrients into their bloodstream through a vein (intravenously). People with this condition may need to be evaluated for complications of the disease. Researchers are now evaluating drug treatments for unresponsive celiac disease.
A gluten-free diet means not eating foods that contain wheat (including spelt, triticale, and kamut), rye, and barley. The foods and products made from these grains are also disallowed. In other words, a person with celiac disease should not eat 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 gluten-free bread and pasta. For example, people with celiac disease can use potato, rice, soy, amaranth, quinoa, buckwheat, or bean flour instead of wheat flour. They can buy gluten-free bread, pasta, and other products from stores that carry organic foods, or order products from special food companies. Gluten-free products are increasingly available from regular stores.
Checking labels for "gluten free" is important since many corn and rice products are produced in factories that also manufacture wheat products. Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers. Wheat and wheat products are often used as thickeners, stabilizers, and texture enhancers in foods.
"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. Recommending that people with celiac disease avoid oats is controversial because some people have been able to eat oats without having symptoms. Scientists are currently studying whether people with celiac disease can tolerate oats. Until the studies are complete, people with celiac disease should follow their physician's or dietitian's advice about eating oats. Examples of foods that are safe to eat and those that are not are provided in the table on the following pages.
The gluten-free diet is complicated. It requires a completely new approach to eating that affects a person's entire life. Newly diagnosed people and their families may find support groups to be particularly helpful as they learn to adjust to a new way of life. People with celiac disease have to be extremely careful about what they buy for lunch at school or work, what they purchase at the grocery store, what they eat at restaurants or parties, or what they grab for a snack. Eating out can be a challenge. If a person with celiac disease is in doubt about a menu item, asking the waiter or chef about ingredients is a good idea.
Gluten is also used in some medications. One should check with the pharmacist to learn whether medications used contain gluten. Reading all labels is important since gluten is also sometimes used as an additive in surprising products. If the ingredients are not listed on the product label, the manufacturer of the product should provide the list upon request. With practice, screening for gluten becomes second nature.
Please see the New Member Packet at the bottom of this page for examples and more information on a Gluten-Free diet.
White Rice Flour-Milled from polished white rice and is very bland. Has a tendency to give baked products a dry, grainy texture and should be combined with other GF flours. Keeps well and can be bought in bulk quantities.
Brown Rice Flour-Milled from unpolished brown rice. The oils in the bran give this a shorter shelf life so store in freezer (or refrigerator if using up in a short time.)
Sweet Rice Flour-(Also called sticky rice flour or glutinous rice flour)- This has more starch than regular rice flour. Since it holds a lot of moisture, it makes an excellent thickener. This is one of the best to use for gravies and sauces. Usually found in Asian stores or purchase from Ener-G Foods.
Rice Polish-this is highly milled with a consistency similar to cornstarch and is not interchangeable with potato flour. Good for baking when mixed with other flours. Can be purchased in most supermarkets.
Potato Starch Flour-Milled from polished white rice and is very bland. Has a tendency to give baked products a dry, grainy texture and should be combined with other GF flours. Keeps well and can be bought in bulk quantities.
Potato Flour-this is not the same as potato starch flour. Do not substitute for potato starch in any recipe. It is made from the whole potato, dried and ground. It is heavy so very little is needed. Can be purchased from Ener-G Foods.
Tapioca Flour-Made from the cassava plant and is light flour. Excellent mixed with other flours for baking and gives a chewy taste to gf foods.
Soy Flour-This is rather heavy flour with a strong flavor and should be used in combination with other flours. Since it is high in protein and fat it can add needed moisture to an otherwise dry recipe. Has a short shelf life so put in the refrigerator or freeze if keeping for any length of time.
Sorghum Flour-Seldom used alone. Use with other flours to make flour blends. Stores well on the pantry shelf.
Arrowroot Flour-From the root of a West Indian plant. Can be exchanged for cornstarch for those allergic to corn.
Nut Flour-Nut flours available are almond, hazelnut and pistachio. These can add a rich flavor to recipes. These flours can be purchased from Omega Nutrition.
Bean Flour-Garbanzo bean flour and other bean flours make delicious baked products. Flours and cake mixes from bean flours can be purchased from Authentic Foods.
Gluten Free Flours
Flours that contain gluten (AVIOD THESE)
This packet contains additional information that is not on this page, and may not appear anywhere on this website.
Download Celiac New Member PacketThis packet was created Feburary 2006.
Last Updated 07/10/2006