Suppose you or a friend has frequent abdominal distress, bloating and other symptoms that seem to puzzle doctors.
Today, experts believe those doctors should consider celiac disease. Also known as celiac sprue, this illness can cause a range of symptoms and problems. Among them: diarrhea, constipation, bloating, abdominal pain, fatigue, irritability, infertility in women, depression and anemia.
"This is a misunderstood disease people may have fleetingly heard about and that the medical community in the United States is also less aware of," says Ciaran P. Kelly, M.D., associate professor of medicine at Harvard Medical School.
Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The culprit in celiac disease is gluten, a protein found in many grains, including wheat, rye and barley. When a person with celiac disease eats gluten, the immune system responds by damaging the villi, the absorptive surface of the small intestine. This damage makes it difficult for the body to absorb nutrients the way it should.
"These foods are plentiful in our diet and often are also used as fillers in sauces and in other foods where one might not expect to find them," Dr. Kelly says. "The challenge for the celiac patient is to learn which foods can cause trouble."
In the past, U.S. doctors did not often look for celiac disease. They thought it occurred in just one of 4,000 people. "In Europe, it's a far more common diagnosis," Dr. Kelly says. But many Americans have European ancestors -- and celiac disease tends to run in families. "It stands to reason there would be more of it here," Dr. Kelly says. "The latest thinking is that celiac disease occurs in between one in 150 to one in 200 Americans."
About 10 percent of the first-degree relatives of a person with celiac disease will also have the disease. A first-degree relative is a parent, sibling or child.
Celiac disease can be triggered by surgery, pregnancy, childbirth, a viral infection or severe emotional stress, the NIDDK says.
Symptoms occur at different times in different people. Sometimes they appear in childhood, but for other people, the symptoms appear when they are adults. Symptoms aren't always in the digestive system, the NIDDK says. Although chronic diarrhea and recurrent abdominal pain are symptoms, irritability and depression also can be symptoms.
Other symptoms, from the NIDDK:
Recurring abdominal bloating
Pale, foul-smelling stool
Failure to thrive (infants)
Pain in joints
Tingling numbness in legs
Pale sores inside the mouth
Painful skin rash
Missed menstrual periods
Doctors may have difficulty diagnosing celiac disease because its symptoms are similar to other diseases, the NIDDK says. Diseases that share symptoms with celiac disease include irritable bowel syndrome, Crohn's disease, ulcerative colitis, diverticulosis, chronic fatigue syndrome and depression.
Recent research has found that people with celiac disease have higher than normal levels of antibodies to endomysium and tissue transglutaminase. Tests can be given to measure these antibody levels. If the tests and symptoms indicate celiac disease, the doctor may confirm the diagnosis with a biopsy of the small intestine, to check for villi damage.
Early diagnosis is important. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications, the NIDDK says.
Gluten does not harm the bowels of those who do not have celiac disease. But if you have the disease, Dr. Kelly says, there's only one treatment: Avoid gluten for life.
For most people, following this diet will halt the symptoms, heal existing villi damage and prevent further damage, the NIDDK says. The improvement begins almost immediately -- within days of starting the diet. The small intestine is usually completely healed, with the villi intact and working normally, in three to six months. (The healing process may take up to two years for older adults.)
A gluten-free diet bans all foods that contain wheat, rye and barley. Most grains, pastas, cereals and many processed foods fall into that category. A person with celiac disease can eat breads and pastas made with potato, rice, soy or bean flour, however, the NIDDK says. Gluten-free foods also are available from specialty food manufacturers. Other foods that are fine to include are meat, rice, fruits and vegetables.
"It's very important to read labels very carefully and to read between the lines when it comes to fillers used in food," says Dr. Kelly. "I advise patients to read the Web site of the Celiac Sprue Association or call them for more information about specific food." Patients can also see a nutritionist who knows about celiac.
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