Once considered a rare condition, current statistics show celiac disease affects one in every 133 people in the United States.
As diagnoses for celiac disease – or having a gluten intolerance – increase, those affected locally can find support and resources from the North Idaho/Eastern Washington Chapter of the Celiac Disease Foundation.
“It’s very valuable to people,” Spokane facilitator Deann Lund said about the group. “It’s making friends with people who understand you.”
Prior to her diagnosis, member Bonnie Boudreau, 67, battled an intense rash for more than 18 months. The rash started on her abdomen and eventually covered her entire body. Cortisone shots periodically would relieve the symptoms, but the rash never went away.
“I thought I was going to die,” Boudreau said about the rash. “That’s how bad I felt.”
When Boudreau reached her breaking point and told her doctor they had to do something, it took extensive blood work to reveal the disease.
“My doctor said I was their first case,” Boudreau said. “They had no information to give me so they told me to look online.”
After reading about the group in the paper, Boudreau attended her first meeting in May 2008.
“They’ve been a life-saver for me,” Boudreau said about the group. “Doctors aren’t as aware with CD, and to have someone to talk to who’s going through the same thing you are has been a big help.”
The Spokane chapter, originally known as the Inland Northwest Celiac Explorers, began in 1996. The small group of seven met every four months in founder Melba Tschirley’s living room. Tschirley formed the group as a result of her diagnosis.
“Many doctors didn’t know about it,” Tschirley, age 82, said. “And they still don’t.”
Her goal was to fill the knowledge gap, and educate herself and others about the disease.
Independent of the Spokane group, Jeanne Dickson formed the North Idaho group in 2001. Her group originated as a connection group. They began holding meetings in November 2004.
“I wanted to give people a place to go,” Dickson said. “To let them know they are not alone.”
As a means to share resources, the two groups combined in 2006. In 2007, the group became an official chapter of the National Celiac Foundation and received nonprofit status.
Being affiliated with the National Celiac Disease Foundation, the group receives benefits such as insurance coverage for events, a percentage of the $35 members pay for national dues, as well as information and brochures to hand out to medical professionals.
The group meets monthly at various locations throughout the area. The informal meetings give members a chance to become advocates for their own health by socializing, asking questions and gathering information about celiac disease.
“Just knowing what you can eat, and being able to find it, are two different things,” Tschirley said. “It’s nice having a group of people to share information with.”
The group also works on educating the public by setting up a booth once a month at various locations, such as Yoke’s Fresh Market and Pilgrim’s Market. Wearing fluorescent green “Team gluten-free” T-shirts, members offer a gluten-free demonstration day.
Dickson also created a library of more than 45 books for members.
“No matter how much I know, I don’t know it all,” said Lori McElhaney, former facilitator of the Spokane group. “I’m always learning something new at the meetings.”
Members end each meeting by sharing recipes and gluten-free goodies.
Celiac disease is the immune-mediated response to ingestion of gluten from wheat, rye and barley that damages the small intestine. The result of the damage is that nutrients pass through the body quickly rather than being absorbed.
Symptoms are common to other conditions and can appear at any time during a person’s life. It is often overlooked or misdiagnosed.
The National Celiac Disease Foundation website reports that “symptoms vary and are not always gastrointestinal.” Those with celiac disease can experience diarrhea, bloating, weight loss, anemia, bone or joint pain, chronic fatigue, depression, dental enamel defects, brain fog and nerve problems that range in severity.
“We’re not a fad,” McElhaney said. “It’s something that’s going to be around and probably will increase.”