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Celiac fundraiser walk/run is May 19
Submitted by unsiez on May 9, 2007 - 12:45pm.
Navigating a world of gluten
By Unsie Zuege
Rich and Shelley Gannon didn’t know what to do. Their infant daughter Danielle was excessively fussy, crying, and miserable. Anything Danielle ate either went through her immediately (10 diapers a day was the norm) or she would throw it up. She wasn’t thriving. The Gannons watched their little baby starving to death and they didn’t know what to do about it.
The Gannons consulted numerous pediatricians for answers. It was frustrating and painful for Shelley to watch her daughter undergo all the tests, which, in the end, were inconclusive. At the time, Rich Gannon was an NFL quarterback with the Kansas City Chiefs. The crisis came in 1998 when the family was in the process of moving to Minnesota from Kansas City. Rich was in training camp when Shelley called him. She had taken Danielle to the emergency room. He flew home.
When Danielle was 1, her celiac disorder was finally diagnosed at the Children’s Hospital of Minneapolis. Her body reacts to gluten as if it is a virus and attacks it, damaging the villi in the small intestine. The villi are “tiny fingers of tissue” that absorb nutrients. Celiac disease causes among other things, diarrhea, bloating, and failure to thrive.
At that point, the Gannon family had to adapt to a new way of eating. Shelley, never a big-time cook to begin with, had to learn to shop and cook gluten-free
“I couldn’t even cook an egg when I got married,” Shelley said. “Now I make everything from scratch.”
Danielle is now 11 years old, and healthy. The entire family is athletic and active, always on the go. While the celiac diet can be restrictive and challenging, the Gannons know their gluten-free diet is a healthy one. It’s getting easier to find gluten-free foods at food stores like Lakewinds, Byerlys, and Cub, she said.
6th annual fund-raiser
Nine years ago, Shelley teamed with two other mothers whose children had been diagnosed with celiac. They formed “Raising Our Celiac Kids” (R.O.C.K.).
“If it hadn’t been for them, I don’t know what I would have done,” Shelley said. “They told me what I could feed my baby; they helped us a lot. We decided to organize a group and help other families because when you leave the hospital — even the nutritionist at Children’s Hospital gave us only two pieces of paper with information — it’s overwhelming.”
R.O.C.K. provides an information network, providing parents of newly diagnosed children with information, support and resources. They also realized that children with celiac have special needs and concerns outside of those that adults face. Membership is more than 100 families.
“The types of foods kids like are different,” Shelley said. “And what do you do for school lunches? That’s one of our big issues right now — getting more schools to offer gluten-free hot lunches or alternatives.”
In 2000, Rich Gannon was a national spokesperson for the University of Maryland Center for Celiac Research in Baltimore, helping to raise awareness of the disease.
In previous years, the annual R.O.C.K. walk took place on Boom Island in Minneapolis. This year, the group moved the fund-raiser to Victoria when Holy Family Catholic High School volunteered its site. The event raises money for the University of Maryland-Baltimore, which has taken the lead in conducting celiac research.
“But our main focus is for children to be diagnosed,” Shelley said. “We’re successful if we don’t have to have another kid go through all that suffering and pain.”
R.O.C.K. — Raising Our Celiac Kids
What: Sixth annual International Walk/5K Run for Celiac Disease.
When: Saturday, May 19.
Walkers and runners registration begins at 8:30 a.m.
5K run and 3-mile walk begin at 10 a.m.
Where: Holy Family Catholic High School in Victoria.
Why: To raise awareness and money for the Center for Celiac Research for the Center for Celiac Research at the University of Maryland-Baltimore.
Who: Public is welcome. Family activities include appearances by Goldy Gopher and Ronald McDonald. Rich Gannon, 2002 National Football League MVP and Rob McClanahan, forward for the 1980 USA Hockey Olympic Gold Medal Team, will sign autographs. Door prizes and raffles begin at 11:30 a.m. Vendors will provide samples of gluten free food products.
For more information: Visit www.twincitiesrock.org or call Katie Bratland at (612) 270-1455.
A chronic autoimmune disorder that damages the small intestine and interferes with absorption of food nutrients. In people with celiac disease, the body reacts to gluten protein as though it were a virus, damaging the villi that line the small intestine, absorbing nutrients. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten.
Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered — or becomes active for the first time — after surgery, pregnancy, childbirth, viral infection, or severe emotional stress. It is estimated that one in 133 people has celiac disease; many don’t even know it but do know they don’t feel well. For a complete list of symptoms, how to be screened for celiac disease, and kids’ menus, and more, go to www.twincitiesrock.org. To find Twin Cities-area gluten free shopping resources, go to http://northlandceliacs.fastmail.fm/shopping.html
PHOTO CUTLINES
Photos courtesy of R.O.C.K Twin Cities
Gannon Autograph PHOTO
NFL 2002 MVP Rich Gannon will be on hand to sign autographs.
Gannon Girls PHOTO
Danielle and Alexis Gannon (in the visors) with their friends at last year’s walk.
Photo courtesy of Center for Celiac Research
Fasano Gannon PHOTO
Dr. Alessio Fasano of the University of Maryland Center for Celiac Research and Rich Gannon, former NFL quarterback, Victoria resident, and celiac spokesperson.
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