Wednesday, January 16, 2008
Going gluten-free
Four area people share their challenges and tips in living with celiac disease — while still eating well.
Lindsey Nair
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Doctors didn’t diagnose Cherie Love-Carter with celiac disease until her weight had dropped to 86 pounds and her kidneys were shutting down. If it hadn’t been for a third opinion, the 42-year-old Roanoke woman might have been put through a round of chemotherapy for a rare form of cancer. “I was mentally and physically exhausted,” she said. “I had really become so frail that I didn’t know what to do.”
But that was 16 years ago, when celiac disease was thought to be very rare and “gluten-free” wasn’t a household term, much less an entire aisle in the grocery store.
Today, more and more Americans are being diagnosed with celiac disease, defined by an intolerance to gluten (a protein found in wheat, rye and barley) that damages the walls of the small intestine and prevents the body from absorbing nutrients.
According to the Celiac Disease Foundation, one out of every 133 people in the United States — or about 2 million total — has the autoimmune disorder . More women than men are diagnosed with the disease.
Others have wheat allergies, which are not as serious as celiac disease but still drive sufferers to go on a gluten-free diet to relieve everything from hives to headaches.
Between 2004 and 2005, the gluten-free food industry increased sales by $77.8 million, according to the Celiac Disease Center at the University of Chicago.
In addition, the U.S. Department of Agriculture estimates that by 2010, gluten-free foods will be a $1.7 billion industry.
William Barbeau, associate professor of nutrition at Virginia Tech, attributes the growth to two factors.
First, he said, physicians are becoming more knowledgeable about celiac disease. The disorder can be diagnosed with a blood test, but a biopsy of the small intestine is the gold standard, he said.
Second, Barbeau believes that some people have put themselves on an elimination diet and are avoiding gluten in order to get to the bottom of their health problems.
“My sense of it is more people hear about food allergies,” he said, “and then they jump to the conclusion that they have a food allergy.”
Whatever the reasons, I had no trouble finding folks in the Roanoke and New River valleys who suffer from gluten intolerance. In fact, I was virtually inundated with replies.As one woman put it, “Everybody I know of knows somebody who has it.”
Here’s a look inside the gluten-free lives of four Southwest Virginians with celiac disease:
Renee Boyer of Blacksburg was diagnosed at age 30.
Age: 31
Home: Blacksburg
Job: Virginia Tech microbiologist
Diagnosed: At age 30, after suffering from unexplained bouts of constipation, bloating and diarrhea. “It was always one extreme or another,” she said.
Big challenges: Not being able to eat out as freely or buy convenience foods. Many packaged and canned foods contain glucose in the form of thickeners. She also misses cereal and bread. “There is really no bread substitute that’s good,” she said. “Now I eat a lot more meat just because without bread, it’s hard to get full.”
What she eats: Lots of quinoa, a tiny, high-protein grain. Boyer also eats more beans, fruit and yogurt and has discovered that Cocoa Pebbles and Fruity Pebbles cereals, which are gluten-free, make a tasty, sweet treat.
Best tip for other celiacs: E-mail or call the headquarters of your favorite restaurants and ask if they have a gluten-free menu. Many, such as Outback, Olive Garden, Panera Bread, Wendy’s and McDonald’s, have provided Boyer with such a menu.
Anna Renick, right, was diagnosed with celiac disease at age 3. She's pictured here with her mom, Tina.
Age: 5
Home: Roanoke
Job: Kindergartner
Diagnosed: At age 3, after suffering from chronic diarrhea and failing to grow or thrive like an average child her age. “It didn’t matter what we did,” said her mom, Tina Renick. “She wasn’t using what she was eating.”
Big challenges: Non-celiac kids can be picky enough, so finding tasty alternatives to macaroni and cheese, pizza and chicken nuggets was hard. According to Mom , a lot of expensive gluten-free cookies went in the trash because Anna didn’t like them. “We sort of tested all the food and had the period of figuring out what was good and what wasn’t,” said Tina Renick, a dietitian. Anna also had to be instructed to not accept food that might make her sick while outside the home.
What she eats: Amy’s pizza with rice crust, Annie’s boxed macaroni and cheese, EnviroKidz cereal, Tinkyada pasta and Kinnikinnick breads.
Best tips: If your child is diagnosed as gluten-intolerant, join a support group such as Celiac Kids, the group Tina Renick runs (e-mail celkidsroanoke@gmail.com for more information). Those parents can save you some of the trial and error of finding palatable food for your child. Also, Tina bakes and freezes gluten-free cupcakes. When Anna is invited to a party, her mom can thaw and frost special treats just for her. Said Tina, “You don’t want your child to feel left out.”
Cherie Love-Carter was diagnosed in her mid-20s.
Age: 42
Home: Roanoke
Job: Front end manager, Roanoke Natural Foods Co-op
Diagnosed: In her mid-20s, after several years of severe illness. Love-Carter’s weakness and fainting spells forced her to call in relatives to help raise her youngest two children, then 2 and 3. “I did think I was dying,” she said. “I really did.”
Big challenges: Buying grass-fed meat products (because grain-fed animals can make celiacs sick, too) and making sure her children eat healthy. Celiac disease is hereditary, and Love-Carter’s oldest daughter, who is 23, has already exhibited symptoms.
What she eats: Chicken, fish, nuts, gluten-free rice chips, cheese and lots of fresh veggies. “It challenges you and gives you more options to eat healthier and better,” she said.
Best tip: Find a dietitian or nutritionist who can educate you about a gluten-free diet. It can curb lots of anxiety after a diagnosis. Some doctors do not follow through with that education. Also, if you find a gluten-free entree you love, fix a big dish on the weekend and freeze individual portions for easy weeknight meals.
Flutist Deborah Kemper.
Home: Salem
Job: Professional flutist
Diagnosed: Ten years ago, after losing 20 pounds and being accused by one physician of having an eating disorder. "I was pretty miffed at that," she said. At the time of Kemper’s diagnosis, doctors thought celiac disease affected about one in every 6,000 people.
Big challenges: Finding ways to enjoy holiday treats after a celiac diagnosis. "You’re healthier and you feel good, but you are so delighted to have the goodies," she said. "I remember when I found out that we could have M&Ms — everyone was bringing them to me!" Kemper still bakes using rice, potato, corn, tapioca or bean flours. In fact, her support group even had a Christmas cookie exchange with gluten-free cookies.
What she eats: Whole foods (unprocessed meats, vegetables, fruits) and lots of rice.
Best tip: Join a support group such as the one Kemper heads in Roanoke (to join, call Health Focus of Southwest Virginia at 774-4022). Also, if you contact the Celiac Sprue Association (www.csaceliacs.org), they can provide you with a three-ring binder filled with products that are safe for the gluten-intolerant.
