Avoiding gluten is a challenge when celiac disease strikes

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Q. What exactly is gluten intolerance and is it serious?

A. It's an inherited disease that goes by many names, primarily celiac disease, but also Celiac Sprue, nontropical sprue and gluten enteropathy. It's characterized by an inability to digest gluten, a protein found in large amounts in wheat and rye, but also in barley and oats.

Though the exact cause of celiac disease isn't known, one theory suggests the body's immune system mistakenly treats gluten as a foreign invader. During digestion, the inner lining of the small intestine is damaged, limiting its ability to absorb nutrients, sometimes enough to cause severe malnutrition.

Estimates of how many people are affected range from 1 in 5,000 to as many as 1 of every 250 people in the U.S. People of any age can be affected. Some are genetically predisposed, with the disease more common among people of northwestern European descent.

How do you know if you have celiac disease? That's not so easy. Gluten is in everything from breads and cakes to soy sauce and soups, so eating practically anything can bring on symptoms, including fatigue, cramps, diarrhea and weight loss. Yet because symptoms are so general, it's not unusual for people to go undiagnosed for years, even decades, or be misdiagnosed with other conditions. The only sure diagnosis is from a biopsy of the small intestine. But before enduring such an invasive and expensive test, try a gluten-free diet for a while to see if your symptoms subside. If they do, you're a prime candidate for a biopsy.

Once diagnosed, the only treatment is to follow a gluten-free diet for life. This allows the small intestine to heal and prevents further damage. Improvement often begins within a few days of eliminating gluten. But the diet is not an easy one. It requires much planning and purchasing of special gluten-free foods. For that reason, no one should be on the diet long-term without a biopsy to support a diagnosis of celiac disease.

Here are several organizations that offer support and practical advice:

American Celiac Society (973) 325-8837

Celiac Disease Foundation (818) 990-2354

Celiac Sprue Association/USA, Inc. (402) 558-0600

Gluten Intolerance Group of North America (206) 325-6980

CORRECTION
In our January 1998 Ask EN column, we erred in saying that someone suspected of having celiac disease (gluten intolerance) should try a gluten-free diet before undergoing a biopsy of the small intestine. In fact, doing so could jeopardize a correct diagnosis. Instead, if celiac disease is suspected, your doctor can test your blood for antibodies to the protein fractions in gluten. If present, there is a strong likelihood of the disease, which is then confirmed through a biopsy.

Write to us if you have a question. We'll answer those of most interest to our readers. We regret, however, that we cannot personally respond. Send to:

Environmental Nutrition, Inc.
52 Riverside Drive, Suite 15-A
New York, NY 10024-6599

fax: (212) 362-2066
e-mail: envnutr@compuserve.com

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