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Learning to Live With Celiac Disease

You may not know you have it, but celiac disease can rob the body of nutrients it needs to thrive.

Diagnostic Clues

Diagnosing celiac disease may be part of the problem.

"It can be very tricky," LaPook says. The first step is typically blood tests looking for the presence and levels of certain antibodies. These tests may include anti-gliadin, anti-endomysial, anti-tissue transglutaminase antibodies, and total immunoglobulin A. If blood test results are positive, a person will then go for a biopsy of the small intestine to confirm the diagnosis and assess the degree of damage.

Sometimes blood tests are inconclusive, LaPook explains, and that's when we test for specific HLA (human leukocyte antigen) genes associated with celiac disease. If these genes are not present, it is unlikely that a person will develop celiac disease. A positive HLA test, however, does not mean that the individual has the condition, as these genes are common in the general population.

"About 30% of the general population has the genetic propensity for celiac disease and yet only about 1% get it, so most people with the genetic propensity don't have celiac disease, and the thinking is that there may be something that unmasks it, like a virus or other factors that we don't understand yet," LaPook says.

A diagnostic clue, however, is the presence of a skin problem called dermatitis herpetiformis, which is marked by itching and blisters. This typically goes hand-in-hand with celiac disease.

Should You Get Tested?

As far as who should get tested, anyone with symptoms should talk to their doctor about getting a blood test -- and perhaps anyone with any of the secondary conditions such as the brittle bone disease osteoporosis or infertility, experts tell WebMD.

In fact, a recent study in the Archives of Internal Medicine suggests that screening people with osteoporosis for celiac disease may help improve treatment and reduce the risks associated with fragile bones.

In the new study of 266 postmenopausal women with osteoporosis and 574 women without osteoporosis, nearly 4.5% of the women with osteoporosis tested positive for celiac disease; only 1% of the women without osteoporosis tested positive with blood tests. What's more, follow-up intestinal biopsies confirmed celiac disease in 3.4% of women with osteoporosis and only 0.2% of women without osteoporosis. And the more severe the celiac disease, the more severe the osteoporosis, the study showed.

Onus Is on You

If your doctor doesn't bring celiac disease up, it's up to you. LaPook suggests patients tell their doctors, "I was reading that it turns out thinking about celiac disease has changed in the last 30 years and the symptoms can be more subtle; I am wondering if I may have it. I hear it's a simple blood test to do a screen for it."

"If they have one of a host of autoimmune conditions such as type 1 diabetes, Sjogren's syndrome ... they should raise the question of this diagnosis with their doctor. And the only way to really demonstrate that you don't have it is to test for it," Green says.

Celiac disease often occurs in people with other autoimmune diseases. In fact, 8% to 10% of people with type 1 diabetes also have celiac disease, he says.

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