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Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. Celiac disease is also referred to as "celiac sprue", "nontropical sprue", and "gluten-sensitive enteropathy".
People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in products we use every day, such as stamps and envelope adhesive, medicines, and vitamins.
Since celiac disease is hereditary, family members of a person with celiac disease may wish to be tested.
Celiac disease is treated by eliminating all gluten from the diet. A gluten-free diet is a lifetime requirement for those with celiac diease. A dietitian can teach a person with celiac disease food selection, label reading, and other strategies to help manage the disease.
Until recently, celiac disease was thought to be uncommon in the United States. However, more recent studies have shown that celiac disease is very common. Recent findings estimate about 2 million people in the U.S. have celiac disease, or about 1 in 133 people. Among people who have a first-degree relative diagnosed with celiac disease, as many as 1 in 22 people may have the disease.
When people with celiac disease eat foods or use 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 disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.
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.
A person with celiac disease may or may not have 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.
Symptoms of celiac disease may include one or more of the following:
Celiac disease affects people differently. Some people develop symptoms as children, others as adults. Some people with celiac disease may not have symptoms, while others may not know their symptoms are from celiac disease. 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 disease 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. As a result, celiac disease is commonly underdiagnosed or misdiagnosed. Sometimes celiac disease is confused with irritable bowel syndrome (IBS), iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and fibromyalgia or chronic fatigue syndrome.
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.
There are a variety of tests for celiac disease. A physician may order one or more blood tests to measure levels of the following antibodies:
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.
Depending on the results of the blood tests, physical findings, and the severity of symptoms, a doctor may recommend a small bowel biopsy. A small bowel biopsy is considered the "gold standard" for making a definitive diagnosis of celiac disease and may be necessary if the results from other tests are unclear.
During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, 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 sample.
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 5-15% of an affected person’s first-degree relatives will also have the disease. About 3-8% of people with type 1 diabetes will have biopsy-confirmed celiac disease, and 5-10% of people with Down syndrome will be diagnosed with celiac disease.
The only treatment for celiac disease is to follow a gluten-free diet (GF diet). When a person is first diagnosed with celiac disease, working with a dietitian can be very helpful for establishing a gluten-free diet plan. A dietitian can help someoe learn 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 a gluten-free 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. 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. This 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 the 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 receive nutrients directly into their bloodstream through a vein, or 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.
The Internet contains information about celiac disease, some of which is not accurate. The best people for advice about diagnosing and treating celiac disease are one’s doctor and dietitian.
Sticking to a gluten-free diet is challenging. 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.
Damage to the small intestine and the resulting nutrient absorption problems can put a person with celiac disease at risk for malnutrition, anemia, and several other diseases and health problems.
Without treatment, people with celiac disease can develop complications like cancer, osteoporosis, anemia, and seizures.