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Celiac disease: When the body goes against the grain -Misdiagnosis
Not always obvious
Celiac disease often goes undiagnosed because its classic symptoms resemble those of other common ailments, such as irritable bowel syndrome and lactose intolerance. Two other bowel disorders, Crohn’s disease and ulcerative colitis, are perhaps more familiar than celiac disease, but celiac disease is more common than both of them combined.
Another reason for misdiagnosis is that one-half to two-thirds of celiac patients don’t have gastrointestinal complaints; instead, they show signs of anemia or fatigue. Celiac disease is usually identified only after no other causes, such as internal bleeding, are found for these symptoms.
These difficulties help explain why it takes an average of 11 years to be diagnosed with celiac disease after the symptoms first appear. Many people assume that the disease is diagnosed as soon as a child starts eating foods that contain gluten, but that’s not the case. Celiac disease can develop at any time in life, including old age. Also, people with a genetic predisposition for gluten intolerance don’t necessarily manifest symptoms of the disease. Researchers describe this phenomenon as “the celiac iceberg” (see illustration).
The celiac iceberg
The iceberg represents all people at risk for celiac disease by virtue of their genes. Those with latent celiac disease have no symptoms. Those in the middle have silent or atypical celiac disease — characterized, for example, by anemia without gastrointestinal symptoms. The proverbial “tip of the iceberg” represents those with the classic symptoms: abdominal bloating, diarrhea, and fatigue.
In very young children, symptoms usually include diarrhea, vomiting, and stunted growth. Older children and adolescents may have stomach pain, canker sores, and tooth enamel defects, and may become depressed or irritable. Some people diagnosed as adults recall having symptoms during childhood, but many don’t. Presumably, they’ve had latent disease most of their lives, and then something — a viral infection, pregnancy, surgery, or even severe emotional stress — has provoked the symptoms. “Some of my patients tell me that they and their family members all got a viral illness, like the stomach flu. But after the family gets better, their own symptoms never seem to go away,” says Dr. Ciaran Kelly, director of the Celiac Disease Center at Beth Israel Deaconess Medical Center in Boston (BIDMC).
The average age at diagnosis is 46; about 20% of cases are diagnosed after age 60. In addition to anemia and osteoporosis, celiac disease is associated with type 1 diabetes, thyroid problems, and dermatitis herpetiformis, a painful skin condition that involves itchy blisters on the elbows and knees. These associations are strong. For example, the rate of celiac disease in people with type 1 diabetes is four to 10 times the average. Infertility, recurrent miscarriages, and neurological problems such as ataxia (loss of coordination) have also been linked to this disease.
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