July 17, 2008

Group Focused on Celiac Disease

By Kimberly Hill, The Edmond Sun, Okla.

Jul. 17--EDMOND -- Medical researchers say about one in every 130 Americans have Celiac disease, making it more prevalent than Down syndrome, Crohn's disease, Type 1 diabetes and even Alzheimer's disease.

With symptoms similar to many other illnesses, however, 97 percent of cases go undiagnosed. The number of Celiacs aware of their condition may be small, but in Oklahoma they're not alone.

The Oklahoma Celiac Support Group has attracted more than 200 from across the state by providing education and opportunities to interact with fellow Celiacs. President Heather Cline said several members are from the Edmond area.

"It's grown a lot," she said.

Cline said the group also has a number of "connections" in the medical community.

"The primary focus as a group that we have is education so that people know better what food they can and cannot eat," said Grace Scruggs, vice president of the group.

Celiac disease impairs the digestive system and creates an intolerance to gliadin, a protein found in wheat, barley, rye and sometimes oats. A gluten-free diet is difficult to manage, Cline said.

"It's strict, and it's for life," she said.

Scruggs moved to Edmond soon after she was diagnosed in 2000. Her new home's cabinets and refrigerator were empty, and she didn't know what gluten-free groceries to start with. She turned to Cline, who introduced her to the support group.

"It became a big help for me," Scruggs said.

Although the group usually meets at Integris Baptist Hospital in Oklahoma City, restaurant outings often are arranged for the members. Scruggs said a number of the outings have been at gluten-free friendly environments in Edmond, including Chelino's, El Parian, Outback Steakhouse and PF Chang's. Cline added to the list, mentioning Fuji Japanese Restaurant and Pho Bulous, both located on Broadway.

"It's nice to be able to go somewhere and know the food is going to be safe," Scruggs said.

Cline said the list of symptoms seems endless because the disease basically causes malnutrition. Symptoms also vary from person to person, which may be why so many overlook the possibility of Celiac disease.

"It manifests in different people in different ways," Cline said. "A lot of people exhibit digestive problems. Fatigue is a common symptom, too."

Scruggs said she was sick for 11 years, visiting the doctor almost every week, before she finally was diagnosed with Celiac disease.

"There's a lot of people that aren't diagnosed yet but have a lot of problems with Celiac disease," she said.

Cline said she remembers feeling lost when she was diagnosed and encourages those in that situation to interact with fellow Celiacs for comfort and ideas to enhance their lifestyle.

"I just remember what it's like," Cline said. "It's a dark time. It's a scary place. It's overwhelming."

The Oklahoma Celiac Support Group meets the second Tuesday of every month, with general support meetings on odd-numbered months and business meetings on even-numbered months.

To learn more about Celiac disease and the Oklahoma Celiac Support Group visit www.okceliac.com.


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