Area girl raises money and awareness for celiac disease
JACKSON -- Kayleigh Nosbusch, a kindergartener in the Jackson County Central school district, looks like most of her classmates.
But when her class did a recent project with Fruit Loops, Kayleigh couldn't participate -- not because she didn't want to, but because her body would have had an autoimmune reaction to the gluten from the wheat flour contained in the brightly colored cereal.
Kayleigh, age 6, had been complaining of stomach, abdominal pain and chronic constipation for years when she was diagnosed in December with celiac disease, triggered by eating gluten --a protein commonly found in wheat, barley and rye.
According to the Celiac Disease Foundation, celiac disease is a lifelong inherited autoimmune condition that affects both children and adults. It is a common genetic disorder and more than 2 million people in the United States have the disease --about 1 in 133 people.
Because the symptoms of celiac disease are often similar to other diseases, it's often underdiagnosed or misdiagnosed.
Kayleigh's mom, Becky Nosbusch, said her daughter has had problems since infancy.
"When she was born we tried all sorts of formulas because she didn't tolerate anything very well," Becky said.
The family visited several doctors who treated the symptoms, but the family never received a diagnosis that addressed the source of Kayleigh's problems.
They eventually went to an allergy doctor, and when the results came back, they found Kayleigh had a high allergy for wheat gluten.
This past December, Kayleigh was in the hospital for the third or fourth time for severe abdominal pain when the doctors did a blood test for celiac disease, Becky said.
The family next went to Sioux Falls, S.D., for a scope and a biopsy, and to put a tiny camera in her stomach to view the condition of her stomach and small intestine.
It was then Kayleigh's diagnosis was confirmed, and the Nosbusch family began changing family meals to be safe for Kayleigh.
Becky said Kayleigh has been missing white bread and chicken nuggets.
"They have gluten-free chicken nuggets, but I don't think they are as good as the real thing," Becky said.
Due to advances in public awareness of celiac disease and gluten-free diets, many recipes have been developed to be gluten-free. Substitute products, like arrowroot, sorghum, tapioca, amaranth and gluten-free flours like rice, soy, corn, potato and bean, are used to mimic gluten. Gluten-free recipes often so closely mirror their counterparts that it is impossible to tell the difference.
To compensate for the changes in her diet, Kayleigh is now taking vitamins to ensure she is getting enough of the nutrients she needs.
Becky and Dustin, her father, have had to do a lot of education, especially at the school -- where Becky is also employed -- to make sure Kayleigh stays safe.
Kayleigh often has to bring her own lunch to school, and Becky said gluten-free breakfast cereals are especially hard to find.
Celiac disease, one of the most common genetic conditions in the world, is often hereditary. There is a 5 to 15 percent of an affected person's first-degree relatives also having the disease.
Becky said her 3-year-old daughter also tested for the disease and the results came back negative. Becky and Dustin haven't been tested, but Becky thinks she might eventually.
Becky said friends and family have been very supportive -- as well as relieved the Nosbuschs finally know what was causing Kayleigh's problems.
"Her little sister is even really good about asking if things are gluten-free," Becky said.
To raise awareness of celiac disease and to raise funds to support curative research, the Nosbuschs will be participating in the 12th Annual Walk/Run for Celiac Disease on May 4 in Victoria.
So far, Becky said they have more than 20 people who have said they will help in some way.
The event, hosted by R.O.C.K. (Raising Our Celiac Kids) Twin Cities, seeks to bring people connected with celiac disease. It will take place at Holy Family Catholic High School, Victoria.
Becky said she and her family are looking forward to meeting other families with children who have celiac disease and to eating at the Gluten Free Food Expo, hosted in conjunction with the walk/run.
The event's goal is to raise public awareness, educate others and raise money for research.
Becky said she and her family will also be raising funds for celiac disease research by hosting various fundraisers in the area.
"We're going to be selling awareness bracelets and having other fundraisers, too," she said.
For more information, Becky encourages people to visit the event's website at www.twincitiesceliacwalk.org.
Daily Globe Reporter Alyson Buschena may be reached at 376-7322.