Article Last Updated: 9/12/2005 11:45 PM

Goodbye to gluten

Celiac disease means changing the way you eat, shop and live

By Tyler Peterson
The Salt Lake Tribune
Salt Lake Tribune

There's a tiny, quarantined section of kitchen counter at the Leatherow family's home in Farr West. That's where the toaster lives and bread crumbs roam free.
   Four of the Weber County family's six members avoid the spot, because if they happen to ingest gluten - dietary proteins in wheat, barley, and rye - they suffer stomachaches, diarrhea and get understandably cranky.
   For the Leatherows and an estimated 17,000 other Utahns with celiac disease, gluten triggers an immune response that destroys the small intestine's ability to absorb nutrients, creating digestive problems and other serious maladies if left untreated.
   To deal with the chronic disease, family members overhauled their diets and traded a kitchen desk niche for a five-shelf cabinet of gluten-free foods. They frequently drive 12 miles from their home to Good Earth, a Riverdale health foods store, to buy groceries.
   "It's actually a pretty healthy diet because you don't eat a lot of processed foods," said mother Eileen Leatherow, before heading to Good Earth on a recent Saturday morning.
   Two of her four children - 5-year-old Kegan, who has celiac disease, and 16-year-old Amber, who might not - accompanied her as she drove past grocery stores and grain silos to find gluten-free cereals, noodles and snacks.
   The store was out of the cookies and crackers she was looking for; she would have to go to Roy. No fettuccine either, so she asked the store to order some.
   Four plastic bags later, Eileen Leatherow wrote a check for $70.51 - twice as much as she would have spent for the same food with gluten.
   
    Getting away from gluten: Eating gluten-free includes avoiding anything that has touched wheat, rye or barley during processing.
   "The diet is quite difficult because, of course, wheat is used in baking and pasta and also . . . as a filler in a lot of packaged foods . . . where you wouldn't expect there would be wheat," said Keith Tolman, a physician and a professor of gastroenterology at the University of Utah.
   People with celiac disease most commonly suffer diarrhea when they eat gluten, but there are secondary symptoms that many do not realize are caused by the intolerance, Tolman said. Among those: anemia, osteoporosis, muscle weakness, mental disorders, easy bruising or bleeding, or even numbness in the hands and feet.
   That could be part of the reason the disease is widely underdiagnosed, Tolman said. People can go years without knowing they have the genetic disease, because symptoms may not emerge until stressful, life-altering events, such as surgery or pregnancy.
   Last year, the National Institutes of Health recommended development of standardized diagnostic tests, as well as increased education of physicians, dietitians, nurses and the public about celiac disease.
   Tolman said people should get a blood test if they have a family history of celiac disease, gastrointestinal symptoms or weight loss. Celiac patients are more prone to cancers of the stomach, small intestine and esophagus.
   The U.S. Department of Health and Human Services estimates more than 2 million Americans have the disease, but only about 60,000 have been diagnosed. The Gluten Intolerance Group in Utah estimates nearly 17,000 Utahns have celiac disease, but only about 1,000 know it.
   Incidence in Utah is higher because the disease often accompanies European ancestry, common in the state. The Leatherow's ward of The Church of Jesus Christ of Latter-day Saints passes out gluten-free bread during sacrament services, accommodating several families with celiac disease.
   
   Where gluten hides: In 1998, Eileen Leatherow's mother was the first family member to be diagnosed with celiac disease. She had shown symptoms since her 20s but had been long misdiagnosed.
   Kegan, born in 1999, stopped growing at 6 months and was having diarrhea about the same time Eileen Leatherow learned the disease was genetic. A pediatrician diagnosed him in 2001, and recommended the rest of the family be tested. In 2002, doctors confirmed the disease in Eileen Leatherow.
   Logan, 9, is showing symptoms, and will soon get his blood re-tested. Amber hasn't been formally diagnosed, but decided to go gluten-free in January because it made her feel better. To the family's surprise, other tests revealed she is casein-intolerant and can't eat dairy foods.
   When Eileen Leatherow cooks pasta or pancakes, she makes two versions: with and without gluten. She prepares a non-dairy version of lasagna specifically for Amber.
   The gluten-free ingredients are more expensive, so to cut costs, she often bakes from scratch. Still, it's more expensive than pre-made food from traditional grocery stores. And it doesn't quite taste the same, her husband says.
   "The better it tastes, the more it costs. She can get something from some companies that is just nasty, but it's cheap," said Dale Leatherow, who often eats gluten-free for convenience.
   Only he and Kyle, 13, can eat gluten - and the two sometimes steal away for Chinese food or pizza.
   For the others, eating out requires creativity, such as ordering kids' meals without buns. When the family recently went on vacation to Washington state, they had gluten-free food delivered from a Canadian manufacturer to the resort where they stayed.
   And they must be vigilant about unexpected sources of gluten. About a year into a gluten-free diet, Kegan began to show symptoms and his parents were puzzled. The gluten, they later discovered, was in the Teflon pans; Eileen Leatherow immediately exchanged them for stainless steel.
   Sending the children to school is also a challenge. Kegan can't use molding clay or fingerpaints because they contain gluten, and when the teacher brings treats, he can't dig in like the others. His mom sends a box of gluten-free treats to Kegan's teacher to help him feel part of the class. As a kindergartner, he doesn't eat lunch at school yet, but Eileen Leatherow is already brainstorming how to make that work next year.
   "It will be loads of fun," she said with a laugh.