Celiac disease sufferers go gluten-free

By Susan Craton
The Enterprise
Thursday, October 7, 2010; SM20

As Teresa Andrasik drizzles spoonfuls of glaze over a pan of cinnamon rolls cooling on the stove of her Mechanicsville home, smells of cinnamon and sugar fill the air.

The rolls, made without wheat-based flour, contain a combination of rice flour and a gluten-free flour made from potato starch and garbanzo, tapioca, sorghum and fava flours. Yet, it's not by choice that Andrasik cooks with the unusual ingredients.

It's a necessity that stems from the fact that she has celiac disease.

The disease is a genetic autoimmune disorder that damages the small intestine and interferes with absorption of nutrients from food, according to the National Foundation for Celiac Awareness, a nonprofit organization. When those with the disease consume gluten, a protein found in wheat and other grains, such as rye or barley, their immune system attacks the intestine's villi, which help absorb nutrients.

"The first eight inches of the gut" are affected, Andrasik said. Gluten causes it to "enflame and swell, and it stops absorbing. The more damage you have, the less you absorb."

Left untreated, the disease can cause malnutrition, osteoporosis and intestinal cancers. In women, it carries an increased risk of miscarriage; in children, it can result in short stature. Symptoms include itchy skin rashes, chronic headaches, diarrhea and fatigue.

Soon after she received her diagnosis 12 years ago, Andrasik organized a support group that meets monthly at St. Mary's Hospital to exchange such information as gluten-free recipes and where can one get the best price for gluten-free flour and products. The group also assists people with food allergies.

Some who seek the group's help don't know why they are suffering, except that food is causing it, said Andrasik, who has three adult children, two of whom follow a gluten-free diet. She seeks to inform people that changing their diet because of celiac disease or a food allergy is challenging, especially at first, but that it becomes "happier and lighter," she said.

"It's not a fool-around thing. It's a get-it-diagnosed" thing, so people can eat the right foods, Andrasik said. "The [gluten-free] diet is the prescription."

That prescription can be tough to get, however, the NFCA says. About 95 percent of cases are misdiagnosed because symptoms mimic those of other disorders, including Crohn's disease and ulcerative colitis. About one in 133 people in the United States have celiac disease, according to the University of Maryland Center for Celiac Research in Baltimore. People of European descent seem to be at particular risk, and 17 percent of celiac patients have an immediate family member with the disease.

Once the disease is diagnosed, a gluten-free diet is the only treatment, according to the NFCA. And it isn't easy, especially at first, Andrasik said.

"The first trip takes hours," she said of grocery shopping. "You're reading every label. Glutens are hidden in so many things. Probably more than 100 names indicate gluten."

Additives can contain gluten, as can spices, medicines and cosmetics.

Marie Carter of Waldorf and her two daughters follow a gluten-free diet. Her younger daughter received the diagnosis 27 years ago.

At that time, it was rare for a person to know how to eat gluten-free. Carter copied two recipes from a book, and a friend gave her two. She prepared those four recipes again and again.

"It was very difficult at the very beginning," Carter said. "There were no [gluten-free] mixes."

She survived then by making everything from scratch, but now, because of greater demand, more gluten-free products are being produced and stocked.

Despite the challenges, Andrasik said, "once you know what to look for, you can live gluten-free."

© 2010 The Washington Post Company