By Lori EhdeThey can’t eat pizza, Big Macs or most pasta dishes.Eating out is risky, and their lives seem to revolve around food labels and food preparation.Despite all this, most people who are gluten intolerant say they wouldn’t live their lives any other way. "As hard as it is to follow this diet, none of us would go back to how we felt before," said Linda Lyon, Luverne.Lyon and more than 30 other gluten-intolerant individuals are part of a local support group, "Celiac Sprue, Herpetiformis Dermatitis Support Group."The group meets at 7 p.m. the first Monday of every month in the basement meeting room of Luverne Community Hospital. The first meeting was in March 2003, and it now attracts members from the tri-state area.They represent a rapidly growing number of Americans diagnosed with celiac sprue or herpetiformis dermatitis.Both genetic disorders stem from an intolerance to gluten protein in wheat, barley, rye and oats. These ingredients are processed in nearly every food product from breads to soda pop.Gluten prevents absorption of nutritionIn affected digestive systems, the microscopic, hair-like vili of the small intestine are "flattened" when exposed to gluten, preventing them from absorbing nutrients.The result in most "celiacs" is abdominal discomfort, most commonly diarrhea, but sometimes constipation. Others diagnosed with the dermatitis form of the disorder have painful rashes, often with large water blisters that itch and bleed.Many have overlapping digestive and skin disorders.Over time, gluten-intolerant bodies become malnourished, which affects energy levels and can trigger a number of immune disorders, such as lupus or rheumatoid arthritis.Finally, a diagnosisBecause the disorder presents itself in so many different ways, often masked as other medical conditions, it’s difficult to diagnose."Many of us have been told we have irritable bowel syndrome," Lyon said. "It’s hard to put it all together … But it’s just a revelation when you get a diagnosis and feel better."The disease traces its roots to northern Europe, where doctors for years have recognized and treated the condition. But U.S. doctors have only recently begun to recognize gluten-intolerant patients. Until then, only their symptoms were treated without identifying their cause.Sara Van Nieuwenhuizen, Luverne, figures she developed gluten intolerance at about 16 years old, but wasn’t diagnosed until she was 32.As a teenager, she remembers blood-stained sheets from scratching raw rashes."My knees and elbows would be jam-packed with water, and they’d itch like crazy," she said. "People would ask me if I’d fallen on my elbows or knees. But it wasn’t just my elbows and knees … I’d get it on my tailbone, back, my head …"Visits to the doctor would result in vague explanations. Mostly she was told she must have had a reaction to something. "They had no idea what it was," she said.Often, if the rash flared, by the time she made the appointment and finally saw a doctor, it would be partially healed.For Van Nieuwenhuizen, and most other gluten-intolerant individuals, her accurate diagnosis and new diet resulted in better health almost immediately.Similarly, celiacs say they notice a gluten contamination immediately as well. "If I have pizza, I’d have to go directly to the bathroom," Van Nieuwenhuizen said.Even the slightest contamination can have serious health effects. For example, a restaurant may prepare a gluten-free meal on a countertop contaminated with wheat flour. Or, a salad that once had croutons is contaminated, even if the croutons are removed."You have to constantly be thinking about what you’re putting in your mouth," she said, adding that breathing flour dust can also make some people sick.Heightened awareness in Luverne areaCeliacs in the Luverne area are lucky. Three physicians in the Luverne Medical Center have family members who are gluten intolerant, so they’re on the lookout for the disorder in their patients.Dr. Larry Lyon, because of his wife, Linda Lyon’s, diagnosis, has been instrumental in educating Medical Center physicians and staff about the disorder."It’s just more prevalent than we ever thought," Dr. Lyon said.He said when Linda was diagnosed six years ago, doctors estimated one in 5,000 or 10,000 patients had the disorder.Today, doctors estimate far more — one in 133 — are gluten intolerant.Dr. Lyon has worked with Linda and other patients in establishing the local support group."The support group has been wonderful," Dr. Lyon said. "So many people are finding help every day."Through the group, members have connected with resources, such as Luverne nutritionist Marg Kuiper, helpful Web sites and the local organic food group, the Little Buying Club on the Prairie for gluten-free food. "Our meetings are a lot about food, because it is so hard to find foods that are gluten-free," Linda said. Even soda pop is made with a line-item ingredient called, "modified food starches." In some cases this means wheat gluten, but other companies use corn starch. Contact with the manufacturer is required to know for sure.For example, until recently, Kellogg’s Corn Pops were gluten free, but now they’re not, and support group members were quick to alert each other about the change.Label reading doesn’t stop in the food aisles.Many soaps and lotions contain wheat germ, and medication, such as Advil and cold medicine, often are processed with gluten.The trick for gluten intolerant consumers is to find products made instead with rice, soy, corn, potatoes or tapioca, for example.Linda said the support group has been a good resource for both food and lifestyle tips. "Almost all of us have had bad days" Linda Lyon said. "When you eat out, for example, you’re really taking chances. That is a frustration for us."Through the efforts and communication of the support group, area grocery stores are stocking gluten-free products and some pizza restaurants will top gluten-free pizza crusts if customers bring them in.More information about celiac sprue and the support group can be found at www.tri-stateceliacs.itgo.com.
