Sitting in a hospital room, Sarah Givens toggled between tears and sighs of relief. Finally, a diagnosis: Her 3-year-old Ellyse had celiac disease, a disorder triggered by the girl’s diet that explained her severe anemia, her skinny arms and tiny feet—and a belly distended like a balloon. The disease, the specialist told Givens, was manageable, but only with the complete elimination of wheat and other sources of gluten from every bite her daughter ate. “All of the staples of her daily diet—Cheerios, Goldfish, waffles and bread—were like poison to her,” Givens recalls thinking as the doctor’s words sank in. “Suddenly I was terrified to feed my own kid.”
There’s a lot of that worry going around these days. Celiac (pronounced SEE-lee-ack) disease, though still relatively unknown to the public at large, may affect as many as 1 percent of Americans, according to the National Institutes of Health, although many may be misdiagnosed and some suffer from only minor symptoms. One reason is the wide variety of those symptoms: fatigue and anemia, abdominal bloating and pain, both diarrhea and constipation, and even infertility—all brought on by a dangerous immune-system response to gluten, a protein found in wheat and other grains (see box, page 144). “It’s crucial to be diagnosed because it will lead to a definite improvement in one’s health,” says Dr. Peter Green, the director of Columbia University’s Celiac Disease Center. Indeed, reversing celiac’s effects can be as simple—or hard—as removing the offending ingredients from a patient’s diet. Faced with that task, moms like Sarah Givens can feel overwhelmed. Sandwiches, cereal and spaghetti suddenly become off-limits, and “hidden” glutens, they learn, lurk in licorice, soy sauce and even lipsticks. “The first thing parents feel is panic, because it’s our job to feed our kids, and guilt that what they were feeding them was making them sick,” says Danna Korn, 45, founder of Raising Our Celiac Kids (R.O.C.K.), a support group with 100 chapters.
Korn, a divorced mom of two from Encinitas, Calif., speaks from experience. Her son Tyler, now 17, was diagnosed with the disease at 18 months, at a time when it was more of a mystery than today. Korn remembers the joy she felt at discovering that Fritos were gluten-free. “I was hugging everyone and crying,” she says. “That’s all I let him eat for three days.” Realizing her son couldn’t live on chips alone, Korn began studying labels and calling manufacturers to figure out what was safe. “There weren’t books, there was no support,” she says. “I was on my own.”
That’s not the case today, thanks to better food labeling and a market that has made gluten-free—pastas, bread and other baked goods made with rice flour, potato starch and tapioca—one of the fastest-growing categories of food at the grocery. “Awareness is increasing as studies published in medical literature are making their way to the Internet. It’s having a snowball effect,” says Dr. Cynthia Rudert. These days Korn, author of Kids with Celiac Disease, says she averages 300 e-mail inquiries a week. She encourages parents to let their kids take charge of their own diet as early as they can, but also to keep foods with gluten in the house for non-celiac siblings as she did for daughter Kelsie, 16. Recently she received a message from Sarah Givens: “Ellyse is doing great,” she wrote. “She’s gained 7 lbs., grown three inches and three shoe sizes … and she even likes the gluten-free pancakes I make.”