Options increasing for those living with the disease
by Leslie Mizell
If you’re one of the many people in the Triad living with celiac disease, the bad news is that you have to say farewell to fast-food burgers, deep-dish pizza, and hot dogs and beer at the ballpark. The good news is that you won’t have to take daily fistfuls of pills or incur large medical expenses — and that there are tasty new sandwich, pizza, and beer substitutes coming out every day.
Living with celiac disease takes a significant lifestyle adjustment, but it’s quite possible to lead a normal existence with it — although admittedly, one in which grocery shopping takes at least twice as long.
The facts on celiac
Celiac disease is a condition in which a person’s immune system reacts to the protein gluten — found in wheat and other cereal grains — resulting in a cell-mediated inflammation of the lining of the small intestine. Unlike a wheat allergy in which there’s a rapid response to the product, celiac is a chronic illness that continues unabated as long as gluten is part of the sufferer’s diet.
Because it’s caused by ingestion of gluten, the only treatment is a gluten-free diet. This means eliminating barley, brewer’s yeast, malt, oats, rye and wheat. Once gluten has been eliminated, symptoms generally go away. Undiagnosed or severe celiac disease, however, can result in several complications.
“Celiac causes damage to the lining to the small bowel, where we absorb all of our nutrients,” says Dr. Tom Orli, a gastroenterologist with Forsyth Medical Center in Winston-Salem.
“A variety of nutrient deficiencies can result,” he adds. “Common ones include iron deficiency, which can lead to anemia, and low calcium, which can lead to osteoporosis.”
Knowing no bounds
An equal-opportunity disease, celiac occurs worldwide, striking both men and women, children and adults.
“Celiac prevalence seems to be about 1 in 300 in the U.S.,” Orli says. “It’s much more common in Caucasians, and heredity does play a role. Several gene locus have been identified that pre-dispose people to the disease.”
Those with a high risk include people with another autoimmune disorder such as hypothyroidism, Type 1 diabetes or Down syndrome. Celiac sufferers also frequently have osteoporosis, iron-deficiency anemia, nervous-system disorders or liver disease.
“A year after I was diagnosed with Type 1 diabetes, I was listening to ‘The People’s Pharmacy’ on National Public Radio,” says Shelby Soderlund, a blogger with Gluten Free Greensboro (glutenfreegreensboro.blogspot.com).
“I had never heard of celiac disease, but they said it was highly correlated with Type 1 diabetes, and the long list of multi-systematic symptoms sounded a little familiar,” she adds. “I asked my doctor to test me for it, and the rest is history.”
A complicated diagnosis
The official diagnosis of celiac disease is the easy part: a blood test, which if it’s positive is followed by an upper endoscopy and biopsy of the small intestine.
However, celiac’s dozens of broad symptoms mimic so many diseases, disorders and ailments that it often takes years before the list is narrowed down. In fact, the National Foundation for Celiac Awareness reports that approximately 3 million people in the U.S. have celiac disease, but only 120,000 have been diagnosed.
“There is now very good and accurate testing available for celiac, but a physician first has to think about the disease being a possibility before it can be diagnosed,” Orli says.
“Because of increased awareness, this is happening more.”
Classic symptoms include diarrhea, bloating, abdominal discomfort and weight loss. Less common symptoms can include constipation, mood and nervous-system disorders, and skin problems. Maddeningly, celiac disease also can be asymptomatic.
“I think I’ve had the disease since puberty, and I’m 35 now,” Soderlund says.
“I linked some of my symptoms together, but it was laughingly that I asked my doctor to test me.”
Orli recommends that patients be evaluated if they’re suffering from chronic diarrhea, unexplained weight loss, abdominal pain and fatigue. Parents — especially those with a family history of celiac disease — also should have their children screened if they notice symptoms such as frequent diarrhea, weight loss or poor growth.
Within the past decade, it’s become increasingly easier to stick to a gluten-free diet as a virtual flood of products has found its way onto grocery shelves. Soderlund took gluten out of her diet in September 2009 following a last hurrah of pizza, sandwiches and other foods she expected to miss. Her first year has had its ups and downs — she misses tomato sandwiches, hearty 12-grain bread, pizza, and beer — and grocery shopping has become not only more expensive but also more time-consuming.
“Gluten is hidden in places you wouldn’t expect, like salad dressings, soy and barbecue sauces,” she says.
“It’s also hidden in some cheeses, deli meats, beef and sausage.”
To help those adjusting to a gluten-free diet, Greensboro’s Earth Fare hosts a gluten-free support group and recipe swap on the third Wednesday of each month. It also offers a tour of its store, including taste tests of some of its gluten-free products.
Restaurants are a different story. People with celiac disease share horror stories of getting sick after ordering from a supposedly gluten-free menu. The problem is that most people don’t fully comprehend how little gluten it takes to make a celiac sufferer ill. It can be something as simple as a dinner roll bumping up against another, or a salad being tossed in a bowl that recently held croutons.
“Some people with celiac will bring the manager to the table and make a big deal about it to make sure the food is being handled properly,” Soderlund says.
“I made the mistake of not going with my instincts when I doubted the gluten-free menu at a steakhouse in Chicago, and I paid for it,” she adds. “I got sick and was miserable for three or four days.”
While it would be nice to think that eliminating a majority of carbohydrates from your diet would have a positive impact on your weight, that’s not necessarily the case. Soderlund switched from Cheerios to Rice Chex after her diagnosis, but she soon discovered that it was lower in fiber and higher in carbs. She advises those who don’t begin to see improvements on a gluten-free diet to check out their medicine cabinets in addition to their pantries.
“There’s actually hidden gluten in a lot of medications,” she says.
“Because medications aren’t required to include the ingredients on their labels like food and beverages are, the only way to find out if the medication is safe is by calling the company that manufactures it.”
Leslie Mizell is a freelance writer based in Greensboro.
A tasty alternative
Lindy Clark has never bought a gluten-free packaged mix. Diagnosed with a wheat allergy in February 2008 in which she must also avoid eggs, dairy and soy, the cooking enthusiast hit the pots and pans and began working up her own gluten-free recipes. By November 2009, she had more than 100 collected in her self-published “Lindy’s Gluten-Free Goodies and More!,” available at local and online bookstores as well as directly from www.glutenfreebylindy.com.
The book contains illustrated recipes for everything from soups and sandwiches to desserts, with an emphasis on the latter. Each item was taste-tested by folks on both typical and gluten-free diets.
“A lot of people didn’t think they had an option to packaged food,” she says. “I got an e-mail from one woman who said my gluten-free pizza crust had given her hope. That kind of feedback thrills me to death.”
Clark, who moved from Ohio to High Point with her husband, Don, to be closer to their daughter, suddenly has found herself in demand for speaking engagements and cooking classes. There’s also a gluten-free restaurant, Lindy’s Goodies, in the works, as well as a second cookbook.
Here’s a tasty recipe courtesy of Lindy Clark:
Fudge Nut Bars
(makes three dozen)
1 cup or 2 sticks butter, softened
2 cups gluten-free all-purpose flour
1/2-cup granulated sugar
3/4-teaspoon xanthan gum
1 14-ounce can sweetened condensed milk
2 cups semi-sweet chocolate chips, divided
1 teaspoon vanilla extract
3/4-cup walnuts, chopped
3/4-cup pecans, chopped
1/2-cup milk chocolate chips
Preheat oven to 350 degrees. Grease a 13x9x2-inch baking pan.
In a large bowl, beat butter until fluffy. In a separate bowl, whisk together flour, sugar, xanthan gum and salt, and beat until crumbly. Set aside 1 cup for topping.
Press remaining crumb mixture into prepared baking pan. Bake for 15 to 20 minutes or until set and edges begin to brown.
While the crust is baking, combine milk and 1½ cups semi-sweet chocolate chips in a small saucepan or microwave-safe bowl. Cook — or microwave at 30-second intervals — and stir until chips are melted. Stir in vanilla. Spread the chocolate mixture over the crust.
Combine nuts, milk chocolate chips, remaining semi-sweet chocolate chips and reserved crumb mixture. Sprinkle over chocolate layer. Bake for 15 to 20 minutes or until center is set. Cool on a wire rack, then cut into bars.
To learn more
For more information on celiac disease, visit: