Published: April 24, 2006 Going gluten-free Lauren Alton's parents keep careful watch on what goes into her mouth.Last year, Lauren, 9, was diagnosed with celiac sprue, a disease in which the body's immune system reacts badly to a substance found in the gluten present in wheat, barley, rye and sometimes oats. Left unchecked, Lauren's disease could cause myriad problems, from the abdominal cramping and fatigue she was already experiencing to nausea, diarrhea or, in the long term, possibly intestinal cancer. Lauren's parents, Dan and Sharon Alton, immediately changed Lauren's diet after the diagnosis. "We all eat gluten-free now," Sharon Alton said. That's not easy. The Altons still have to watch for glutens in condiments, medicines and toothpaste. Lauren can't lick envelopes or gummed stickers, just in case there's gluten in them. Gluten can be an ingredient in vitamins, pills (especially gelatin capsules) and even lip-gloss. Lauren has adjusted well, saying that although she misses hot-dog and hamburger buns, the gluten-free food "tastes better." As for how she feels? "Way better!" Lauren said. Sharon Alton said the diagnosis initially "turned our world upside down." That's why she, Dan and Lauren -- an only child -- were glad to join up with Celi-ACT, a support group for children with celiac and their families, friends, teachers and whoever else is a part of their lives. Formed last August by Mary Sue Walker, a clinical nutrition specialist working for Pediatric Gastroenterology PC at East Tennessee Children's Hospital, the group meets semimonthly. "Celiac disease requires significant, lifetime changes in diet and food management," Walker said. "The consequences of not making these changes can be life-threatening." And at first they can seem overwhelming. Indeed, decades ago when there was less celiac awareness, finding gluten-free food that "tasted good enough to eat" could be difficult, said Beverly Bauer, a volunteer and board member with the group who was diagnosed with celiac about 30 years ago. "I basically just cooked everything from scratch for a while," Bauer said. Today, in addition to specialty stores, including Earth Fare supermarket, Fresh Market and Nature's Pantry, many mainstream grocery stores carry gluten-free products. "Manufacturers are catching on" that there's a large market for gluten-free foods, Dan Alton said. The Celiac Society of America estimates the disease affects 1 in 133 people in the United States. Still, the lifestyle change requires information, effort -- and money. Pediatric gastroenterologist Dr. Youhanna Al-Tawil said that's why his practice at Children's hired Walker last year. Though Al-Tawil said he's seen a "several-fold" increase in children with the disease in recent years, most of their parents had never even heard of celiac, which is genetic and diagnosed with a test that looks for a gene marker. A bowel biopsy can confirm the diagnosis. Even regular pediatricians and other primary-care physicians aren't always familiar with celiac, which is not the same as having a wheat allergy, Al-Tawil said. Once the diagnosis is made, "we have a big problem with compliance because the diet is very, very tough," Al-Tawil said. "Everything has gluten everything has wheat, has rye, has oats. It's very, very hard to tell a kid, 'You cannot eat pizza. You cannot eat cake.' " So Walker's job consists of nutritional counseling, to let parents know what kids can eat, and referral, collecting samples and donations of gluten-free products to help parents in a financial bind. Al-Tawil also wanted her to provide another kind of support: linking celiac families with one another. "It's so important when you're newly diagnosed to find people in the same neighborhood as you, using the same stores as you," said Dan Alton, who recently agreed to chair Celi-ACT and also operates an affiliated Internet listserv that started with a dozen members and is now approaching 50. Such networking helps families like Alisa and Bill Weeks, whose 9-year-old daughter, Meggi, was diagnosed last fall after suffering long-term stomach problems and reflux. "I'm getting used to" gluten-free foods, Meggi said, although "I do miss Cheez-Its. It was, like, my favorite." In solidarity, Meggi's sister, 14-year-old Ali, won't eat foods in front of Meggi that Meggi can't eat, "except for some things she doesn't like," Ali said. Meggi's still learning what she can and can't eat. "If I don't know if it's gluten-free, I ask to look at the ingredients," Meggi said. "Sometimes I just don't take a chance if I don't know." Friends and family have been supportive of Meggi's and Lauren's new restrictive diets, although Dan Alton said it's still a problem that teachers at Lauren's school so often reward children with cookies, cupcakes or pizza -- none of which Lauren can have. But one thing those without celiac often don't "get" is the issue of cross-contamination -- meaning that even if food is gluten-free, it still has to prepared and served on a separate surface to be safe. Gluten-free bread toasted in a toaster immediately after wheat-containing bread can be contaminated, as can gluten-free cookies baked on the same sheet as those that contain glutens. Just removing a piece of bread from a plate of otherwise gluten-free food doesn't make that food safe, Walker said. Even Communion can be an issue group member Melanie Braden asked her pastor -- who willingly obliged -- to use rice cakes instead of gluten-containing wafers for her 10-year-old son, Jared, who has celiac. Parents share suggestions, solutions and recipes on the listserv -- though "commercial" content, products for sale and chain letters are strictly forbidden -- and in the group, which sometimes meets outside the hospital for special programs. During a recent meeting, for instance, the group attended a gluten-free cooking class at Earth Fare supermarket, where Earth Fare employee BillieKate Webster showed them how to prepare safe, but still tasty, bread, biscuits and pizza. In January, Webster began teaching monthly gluten-free cooking classes, sometimes with different themes, such as Asian food. She now gets between 20 and 30 people, not all of whom have celiac, per class and wants to start a class especially for gluten-free children. Other Celi-ACT meetings include speakers, tip-sharing -- and fun activities for the children. Despite having a disease that forces them to take on some adult responsibilities, they are still children, Walker said. "We want them to enjoy their lives," she said. Kristi L. Nelson may be reached at 865-342-6434. She is health writer for the News Sentinel. ABOUT CELIAC * What: Autoimmune reaction caused by substance in the gluten, which is a protein, found in wheat, barley, rye and sometimes oats * Who: 1 in 133 people in the U.S. * Symptoms include abdominal pain, nausea, diarrhea, weight loss, fatigue, skin blisters * Damages small intestine, restricting ability to absorb nutrients * Increases risk of developing other autoimmune disorders, neurological problems, osteoporosis, some cancers * No symptoms for 60 percent of children with celiac and 41 percent of adults with celiac * Average person takes 11 years to be diagnosed * It's genetic: Child with celiac may have undiagnosed adult relative * It's not the same as wheat allergy Sources: Celi-ACT support group, Archives of Internal Medicine, American Journal of Gastroenterology, National Institutes of Health GLUTEN BY ANY OTHER NAME Some common synonyms for wheat on ingredient labels: Triticale FINDING SUPPORT CELI-ACT SUPPORT GROUP * What: Support group for children with celiac disease and their parents, siblings, relatives, friends -- anyone part of child's life * When: 6 p.m. third Monday of every other month next meeting May 15 * Where: Menschendorf Conference Room, East Tennessee Children's Hospital Koppel Plaza * Info: Mary Sue Walker, 865-546-3998 GLUTEN-FREE COOKING CLASS * What: Free class for anyone wanting to cook without glutens * When: 6 p.m. third Wednesday every month next class May 17 * Where: Earth Fare supermarket, 10903 Parkside Drive * Info: 865-777-3837, www.earthfare.com CELIAC DISEASE FOUNDATION * What: Provides support, information and assistance to people affected by celiac disease and dermatitis herpetiformis * Info: www.celiac.org CELIAC SOCIETY OF AMERICA * What: Provides resources and information for people on gluten-free diets * Info: www.celiac.com |
