Gluten-free camp for kids with celiac disease

August 14, 2008 7:34:38 PM PDT
The Taylor Family Foundation's annual fundraiser is coming up soon in the East Bay to help support free camp programs for children with life-threatening illnesses and children at-risk. This year, I visited a camp session that helped children with an illness called celiac disease.

This particular summer camp is all about the food, whether it is muffins, or mariposa brownies, or chocolate chip cookies, or chicken nuggets, or creamy macaroni and cheese, or a loaf of bread, it is food they can't normally eat when they go someplace. However, they can eat it at camp because it is gluten-free.

These kids have a bad reaction to gluten, a protein found in certain grains like wheat, rye and barley.

Some of the children we talked to described their reactions to foods with gluten.

"If I have too much gluten, I could have kidney failure and stuff like that."

"I get really sick, like I'll be in the bathroom all night, throwing up."

"I usually get really bad migraines."

"They found out because I was breaking a few bones every year."

"I can't eat wheat, oats, barley or rye. So sometimes when I go to birthday parties I can't have the cake there."

"Celiac has a lot of different ways that it can present. One of the most common ways, especially in kids, is that they may not be growing quite at the rate of some of their friends," says Dr. Doug Corley, a gastroenterologist with San Francisco Kaiser.

Eleven-year-old Nathaniel's dad is a doctor at Kaiser in San Francisco. He said his son was not thriving as a baby, until a blood test revealed celiac disease.

The National Institutes of Health (NIH) says the gluten intolerance from celiac disease can cause lifelong problems. The immune system responds by damaging the small intestine. Nutrients do not get absorbed into the blood stream and that can lead to diarrhea, osteoporosis, hair loss, anemia and infertility.

The NIH estimates as many as three million people in the United States have celiac disease, but most of them are undiagnosed because of a lack of awareness.

That is why former Oakland Raiders' quarterback Rich Gannon is part of a national campaign to raise awareness.

"We initially found out about celiac disease about 10 years ago. My youngest daughter, Danielle, was a year at the time and she wasn not doint very well," says Gannon. "She was really struggling keeping foods down, she had a bloated stomach, her ribs were exposed. She was really, essentially was starving."

Danielle underwent a lot of tests before doctors did the simple blood test that revealed celiac disease and they changed her diet immediately.

"Once you change over to a gluten-free diet, most kids do great," says Dr. Corley.

The Taylor Family Foundation provides free camp every summer to nearly 3,000 children at Camp Arroyo in Livermore. The camps host children with a variety of illnesses, ranging from heart disease, autism, skin disease, celiac disease, and HIV and AIDS.

"This camp has a waiting list," says Elaine Taylor, the Camp Arroyo founder who knows first-hand about celiac disease. "I i was sick for 11 years, diagnosed with everything from irritable bowel to pancreatitis, to ulcers and I never got better. So they suggested a mental health professional."

Finally, a doctor did a blood test.

"As soon as I went off gluten, within 48 hours I was better," says Taylor.

Taylor works closely with the chef from the YMCA, which runs the camp and the kitchen.

"It's one of our hardest camps because it's so specialized and every ingredient has to be checked. You have to make sure there's no gluten in anything," says Chef Nicole Lucia.

"I use a lot of bean flours and sorghum, millet," says head bread baker Anna Sobaski who flew out from Iowa to cook for the kids for a week. "I have celiac and I am also a type one diabetic, so I was looking for a bread that was high in protein and fiber and I needed something really nutritious."

Sobaski was inspired to create a variety of breads for people with different allergies.

"So I came up with a bread that's gluten, corn, dairy, soy, rice, nut and yeast-free," says Sobaski.

That means kids here can have sandwiches and other foods they love that win their good taste award.

The Taylor Family Foundation's annual "Day in the Park" fundraiser is Sunday, August 24th. For more information, visit their Web site at www.ttff.org

For information on food resources for children with celiac disease, read The Back Story.


Load Comments