Waiter, Please Hold the Wheat

In 1988, Alice Bast came home from a vacation in Cancún with what seemed like a classic case of Montezuma's revenge, but with one crucial difference. It didn't go away. As days of illness turned into months and years, her weight dropped from 130 pounds to 110. Her hair fell out in clumps when she brushed it. Her teeth began chipping, and she suffered severe fatigue, migraines, depression and tingling in her fingers and toes. "I thought I was dying of cancer," she says. But the worst moment came in 1990, two weeks before her second child was due. Bast suddenly became aware that the baby wasn't moving. Her husband put his ear to her belly and looked up with panic in his eyes. "I hear nothing," he said. Their unborn daughter was dead.

Twenty-two physicians tried and failed to make sense of Bast's symptoms. It was a veterinarian friend who finally suggested a possible cause in 1994. "Dogs sometimes have trouble digesting grains," the friend said. Within days, Bast had obtained a formal diagnosis of celiac disease—an intolerance for gluten, the protein in wheat, rye and barley. The resulting damage to the small intestine makes it hard for the body to absorb nutrients. Far from being dismayed, Bast was thrilled. "I wasn't dying. I wasn't crazy. I was elated!" she says. Better yet, just two weeks after eliminating these grains from her diet, she started feeling well again. In 2003, she established the National Foundation for Celiac Awareness to help alert others to the existence of the disease. "All those years I lost, I don't want other people to lose them, too," she says.

There are plenty of people who stand to benefit from her work. Until recently, celiac disease was thought to be rare in this country. But in 2003, Dr. Alessio Fasano at the University of Maryland's Center for Celiac Research published a study in the Archives of Internal Medicine showing that the ailment actually affects 1 in 133 Americans, or roughly 3 million people. And they're not just Caucasians, as previously believed, but African-Americans, Asians and Latinos as well. In 2004, the National Institutes of Health formally recognized Fasano's conclusions. Overnight, the disease went from "rare" to "common," although it remains vastly underdiagnosed. "Most GPs don't look for it," says Elaine Monarch, executive director of the Celiac Disease Foundation. But increasing awareness and more sensitive blood tests for the disease are leading to more diagnoses—which in turn are causing more companies to start marketing gluten-free foods. "When we got gluten-free beer, that was huge," says Vanessa Maltin, author of "Beyond Rice Cakes: A Young Person's Guide to Cooking, Eating and Living Gluten-Free."

Maltin once dated a man who panicked when she told him about the ailment, thinking he could catch it from her. But only people with a genetic predisposition can develop celiac disease, and only if they're eating gluten. (Sometimes it also takes a stressor—like an accident, surgery or an infection—to exacerbate the condition enough to make symptoms noticeable.) Celiac disease is an immune response gone awry. Normally, when food enters the small intestine, critical nutrients are absorbed into the bloodstream through masses of tiny fingerlike projections called villi. But in people with celiac disease, the immune system mounts an all-out assault against gluten and any villi that have absorbed it. The villi become inflamed, eventually shriveling up, flattening out or even disappearing. Without functioning villi, the body stops absorbing food properly.

In many patients the result is diarrhea, bloating and abdominal cramping. But as Bast's experience shows, problems can spread far beyond the digestive tract. Many symptoms—like anemia, osteoporosis and a general "failure to thrive" in young children—result from poor absorption of nutrients. Several years ago, Jamie Yadgaroff, a Philadelphia lawyer, was alarmed to find that her 3-year-old son, Daniel, hadn't outgrown his fall clothes from the previous autumn. "He had a distended belly, with skinny arms and legs," she says. "He was so small, he wasn't even on the growth charts." But after going on a gluten-free diet in early 2003, Daniel grew four inches in a year and is now a normal, if short, 8-year-old.

Nutrient deficiencies are not the whole story, however. Celiac disease is also an autoimmune disorder that can harm many parts of the body. "Name the organ, and celiac disease can affect it," says Dr. Peter Green, director of the Celiac Disease Center at Columbia University. In launching its assault on gluten, the immune system generates antibodies to an enzyme called tissue transglutaminase. This enzyme is an innocent bystander that acts on gluten in the lining of the intestine. But because the enzyme is also found throughout the body—in the skin, heart, thyroid, bones and nervous system—antibodies that attack it can direct their fire at any of these other organs, too. Green has even documented a connection between celiac disease and low levels of "good" cholesterol, a key component of which can be made in the intestines. And he's researching an association with infertility in both men and women, although the cause remains unclear. "Wheat may be the staff of life, but not for people with celiac disease," he says.