Celiac Disease: Avoiding Grains

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.

The longer a person suffers, the more physical problems he or she is likely to develop—which is why it's good to get tested early if you have symptoms or if the disease runs in your family. Diagnosis is easy, if only doctors think to test for the ailment. In 2000, a blood test for the antibody became available. A positive test is usually followed up with a small-bowel biopsy to confirm the results, before patients are put on a strict diet for life. But there are worse fates than going gluten-free. "If God came down and said to me, 'You have to have a chronic disease,' I would pick celiac," says Dr. Ritu Verma, a pediatric gastroenterologist at Children's Hospital of Philadelphia, who has two children of her own with the disease. Patients don't have to undergo complicated surgeries or toxic treatments to be healed. All they have to do is eliminate wheat, rye and barley from their diets.

Not that the regimen is easy at first. Verma recalls feeling overwhelmed when her children were diagnosed in 2004. Wheat can lurk in a lot of unlikely places, from licorice and soy sauce to soups and gravies. Even blue cheese can have it, as the mold is generally grown on bread, then injected into the cheese as it ages. Mere traces of gluten can cause problems. "That means you need to ask when you order french fries in a restaurant whether the oil was also used to fry chicken nuggets," Verma says.

But living gluten-free has never been easier. In seven years the number of gluten-free products on the market has doubled, according to a recent presentation at the Institute of Food Technologists. These range from Bell & Evans's gluten-free chicken nuggets to Redbridge beer, which is made from sorghum instead of malted barley. Supermarkets like Whole Foods and Wegmans sell gluten-free breads and cookies. And certain restaurant chains, like Outback Steakhouse and Carrabba's Italian Grill, offer gluten-free menus.

Some high-end restaurants are developing gluten-free options, too. On a recent evening, CNN anchor Heidi Collins, the celebrity spokesperson for the National Foundation for Celiac Awareness, dined with Kelly Courson, one of the Celiac Chicks bloggers, at Bistango in New York. The fare ranged from bruschetta on gluten-free bread to a garlicky, gluten-free fusilli with sun-dried tomatoes, chicken and broccoli. "It's exciting to go to a restaurant and be able to eat what you want—not just plain chicken but bread, pasta and dessert, too," says Courson. "We're not wallowing in 'poor me'."

Certainly that's true of Shauna James Ahern, author of the forthcoming book "Gluten-Free Girl," a delightful memoir of learning to eat superbly while remaining gluten-free. On a recent vacation in the Pacific Northwest, she and her husband dined on fresh-caught crab and blackberries fresh off the bush, which they made into a gluten-free crisp, substituting almond meal, tapioca flour, quinoa flakes and cornmeal for regular flour. "When there's this much bounty, it would be a sacrilege to say my life isn't good because I can't eat bread," she says. She's clearly not suffering. Just call her a wheat watcher.