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With Celiac Disease, Sufferers Become Food Detectives
August 22, 2001

BOSTON (Boston Globe) - Between running the Commonwealth @of Massachusetts, rearing three small children and commuting the 150 miles from home to to Boston, Acting Governor Jane M. Swift has a lot on her plate.

What she doesn't have is bread. Like an estimated 1.5 million other Americans, Swift has a disease

that keeps her from eating conventional pasta, cereal and bread, among other grain products.

The fairly common yet little-known condition called celiac disease causes the body's immune system to attack its own digestive tract in response to eating any food containing wheat, barley, rye or oats.

A new test shows that roughly one of every 200 people has this condition, also called gluten intolerance or celiac sprue, which causes a range of symptoms from stomach upset to life-threatening nutritional deficiencies.

Swift and other celiac patients must investigate the ingredients of each item they eat, making sure that it is free of gluten, the protein found in most grains. In people with celiac disease, glutens in food activate antibodies in their immune systems, which in turn attack the villi, or small, fingerlike appendages in the small intestine that absorb the food's nutrients.

Some celiac patients become anemic from their body's inability to absorb iron, while others develop osteoporosis because they can't process calcium, said Ciaran Kelly, a gastroenterologist at Beth Israel Deaconess Medical Center in Boston. In the most rare and severe cases, the disease, which has no known cure, can even lead to lymphoma, a form of blood cancer, Kelly said.

Because the symptoms can vary so broadly, if there are any symptoms at all, celiac disease is difficult to diagnose, and is sometimes not even on a doctor's radar screen. And although the treatment for celiac disease seems rather simple - removing glutens from the diet - in practice, it can be a daily struggle.

At restaurants, waiters often don't know how many foods and other products contain glutens. In stores, packages often aren't fully labeled. Many people with celiac disease become expert at substituting corn- and rice-based ingredients in recipes calling for flour and other gluten-laden food. But even foods as seemingly innocuous as canned vegetables may harbor gluten, so celiac patients must become detectives, carefully checking labels and calling food manufacturers to make sure the food they eat doesn't pose a danger.

"Glutens are widely used in the food industry as an inexpensive filler," Kelly said. "Patients need to avoid not only obvious forms of proteins such as bread, but also need to be careful purchasing processed food."

Even nonfood products such as gum and lipstick can harbor gluten.

Until fairly recently, the disease was thought to be concentrated mainly in European countries such as Ireland, France, and Italy, with doctors believing US cases numbered as few as one per every 5,000 people. The disease could only be diagnosed by intestinal biopsy - an unpleasant procedure where a tube fitted with a scalpel is inserted down a patient's throat, through the stomach and into the intestine, so it can remove a small piece of the intestine. But the diagnosis has skyrocketed to one in every 200 people since the development a few years ago of a blood test that measures antibodies in the blood.

"In Europe it has been made simpler because food manufacturers appreciate that this is relatively common condition, so there is a gluten-free symbol" on food products, Kelly said. The icon features an ear of wheat in a circle with a slash though it.

For patients in the United States, a number of celiac organizations, including the Celiac Foundation and the Celiac Sprue Association, have put up Web sites with nearly exhaustive lists of gluten-free products.

Copyright 2001 The Boston Globe. All rights reserved.

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