Sylvania 5K to raise awareness about celiac diseaseWritten by Brandi Barhite | Community Ombudsman | firstname.lastname@example.org
Cheri Shinaver’s daughter, Kaylee, had a stomachache for two years.
“My belly hurts, my belly hurts,” she would say.
Shinaver, a nurse, would take her to the pediatrician who couldn’t find anything wrong. The stomachache would persist.
“We kept going back and back,” Shinaver said.
At one point, the doctor saw that the young girl bit her nails and suggested she was nervous and it was leading to stomach problems. She went to a psychologist. No resolution.
“It would hurt when she went to school, when she went to soccer practice and on the weekends,” Shinaver said.
Finally, a bout of bloody diarrhea sent her to a GI doctor who did some blood work. The result: celiac disease, an allergy to eating gluten, which is a protein found in wheat, barley and rye.
“One in 133 people have celiac disease, but 95 percent aren’t diagnosed,” Shinaver said. “It took my daughter over two years to get diagnosed and it takes eight or nine years for an adult to be diagnosed. That is a lot of people suffering.”
On May 17, Shinaver hopes to raise awareness about celiac disease at the second annual Beat the Wheat Race at Fossil Park, 5705 N. Centennial Road in Sylvania. Registration for the 5K begins at 7:30 a.m. with the race starting at 9 a.m. Registration is $16 in advance and $20 on the day of the race. Everyone who registers gets a T-shirt.
“We have a free family fun walk if you aren’t a runner,” she said. “We also have a food fair with a bunch of gluten-free companies donating samples.”
Charlie’s Homemade Pizza & Italian Cuisine, Chick-fil-A and Organic Bliss are among the businesses serving food. Kathy Nagypaul, owner of Creative Cupcakes & Baked Goods, plans to bring gluten-free cupcakes, sugar-free cupcakes and regular cupcakes.
“Personally, I have tried my gluten-free cupcakes and they are just as good as my regular cupcakes,” Nagypaul said. “People come in and order the gluten-free ones, even though they don’t need to be gluten-free; they just think it is healthier.”
More than 200 people came to the inaugural race last year with 174 registering to do the race and 30 walking around and sampling the food and picking up literature on celiac disease and eating gluten-free.
Shinaver said meals, birthday parties and vacations are more complicated because of celiac disease. At first, Kaylee, who is now 12, was the only one diagnosed in the family, even though there is a genetic link.
“But just this last fall, my 6-year-old started to complain of stomachaches,” Shinaver said.
Once again, the doctor thought it was something else. Acid reflux was suspected, even though Shinaver asked that Rylee be tested for celiac disease. The doctor wouldn’t do it at first, but eventually did.
Rylee had it.
For Shinaver, this means that two of her children now need to eat gluten-free, while two don’t.
Since cross-contamination in cooking is a worry, most of the family’s food is gluten-free, which is more expensive.
“One tiny little crumb is enough to set off your [immune system] and it will take months for your body to heal.”
For those with this digestive disease, eating something that contains gluten triggers an immune response in the small intestine. The inflammation then leads to intestinal damage and limits nutrient absorption.
Shinaver said her girls know how to read labels, but socially the 12-year-old is more affected by her disease so far.
“I want her to learn to be an advocate for herself. It will always be this way,” Shinaver said. “She has good friends who are really supportive of her. She knows she doesn’t eat at the cafeteria. When she goes to birthday parties, she brings her own pizza and her own cupcake. We try to make it as normal as possible.”
For more information, visit www.beatthewheatrace.