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Celiac disease, with symptoms ranging from diarrhea to extreme malnutrition, affects about one in every 133 people
Tina Maurer studies cereal labels to find
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Date published: 7/23/2006
Getting a diagnosis was especially tough for Thompson, the support group founder, because unlike the other members of the group, she doesn't feel any different when she stops eating gluten.
Thompson, 44, has a wealth of health problems, some of which she said improved when she went on the gluten-free diet. But although the diet helps her overall, she doesn't react to small, individual doses of gluten the way others in the group do.
At a recent meeting of the group, all of the women said it was difficult to find a doctor who really understands the disease.
Mary Tooker, 41, of southern Stafford, who was joining the group for the first time, said she is sure she has celiac, but she hasn't bothered to get tested.
Tooker is still working out the kinks in her gluten-free diet, as evidenced by the outbreak of dermatitis herpetiformis on her shoulder. The itchy red rash appears on some people with celiac as a result of eating gluten.
Josovitz said confirming the diagnosis medically is important, because people with celiac are at a higher risk for gastrointestinal malignancies.
A blood test is available to screen for the disease, and a biopsy is used to confirm the result of a positive blood test. Once diagnosed, people with the disease should see their gastroenterologist once a year, Josovitz said.Eating gluten-free
A growing number of stores and restaurants are able to cater to celiac sufferers' special dietary needs.
Cynthia Kupper, executive director of the Gluten Intolerance Group, has worked with several restaurant chains to develop gluten-free menus. Among them are Outback Steakhouse, Carrabba's Italian Grill and Bonefish Grill.
"It was a huge success for them to do this," Kupper said. "It gave people with celiac disease an identifiable place where they could eat out and where the menus were consistent wherever they went."
Kupper said she now is taking over management of a program that helps individual restaurants adapt their menus and cooking practices to offer gluten-free items.
"Dining out in a restaurant is one of the scariest things for them," Kupper said of people who can't have gluten. "So knowing that restaurants care and knowing that they're willing to work with them is very important to them."