The only treatment is a diet that avoids gluten completely, which is not a simple thing, according to Dr. John Zone, chairman of dermatology at the University of Utah, who has become an expert on gluten intolerance because he treats its effects on the skin, a rash called dermatitis herpetiformis or eczema, among others. "It's not as simple as avoiding cake or bread, he says. "Gluten is an ingredient in a large number of commercially prepared foods.

"This is a familial disease and people with severe symptoms find the diet so difficult and dreadful they don't even want to know if they have it."

Physicians, patients and researchers hope that one day science will be able to block the immune response to the protein gluten. For now, avoiding even the smallest amounts of it is the only treatment. And until you go gluten-free, Zone says, you don't realize how central a part of the diet gluten is.

Denice Fonnesbeck of Lehi knows both that it's difficult and that it can be done. Her father, Paul Faris, has celiac disease. When she was 17, Fonnesbeck was diagnosed, too. And one of her three children, Jasen, 9, has the disease. "It was really hard at first, but once you know what you can and can't have it's not so bad," she said. Even in high school, friends made sure there was a salad when they ordered pizza, so she could eat with them. And although she sends a lunch from home with Jasen, he could get a gluten-free school lunch, she adds.

She's pleased with the response she's had from teachers, who keep a goodie bag of treats Jasen can have so if someone brings in birthday cake or other treats he's not allowed there's something for him, as well.

At home, she avoids gluten, but her husband and their other children have sandwich bread and other things available. When she cooks dinner, though, it's gluten-free. That's just easier for everyone.

After a blood test, Zone and other doctors say that a biopsy of the small intestine is needed. Even without symptoms, patients can be malnourished, for example.

It's also important, Zone notes, to get the tests run, rather than try to diagnose the disease oneself. He tells of parents who assume that if one child has the disease, a sibling does, as well. That's not always true.

Often in Europe and increasingly in the United States, companies are producing foods that contain no gluten. Health food stores carry many gluten-free products, as well.

Shelley admits the diet was tough at first. When she attended her first workshop sponsored by the Utah Gluten Intolerance Group, "I was just stunned." It's not just in food, either. Gluten's in the glue that seals envelopes, in lipstick and lip balm and on the backs of stamps. Trying to handle it on her own, she found, was too discouraging. But meeting with others who are gluten-intolerant was a life-saver, she says. "Their years of experience can lead you so quickly to make the adjustment."

The Utah Gluten Intolerance Group has three branches, including one in Utah County, one in Salt Lake County and the Celiac Support Group of Northern Utah. More information is available online at www.gfutah.org

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E-mail: lois@desnews.com