Welcome to Celiac Camp

Where Bay Area kids catch a gluten-free break from the daily grind.

It’s nearly noon, and the kids are hungry. Five girls, who appear preteen and teen, are loitering near the kitchen in the expansive, airy mess hall at Camp Arroyo, a 144-bed state-of-the-art camp set among the sprawling, baked hills in Livermore.

Camp founder Elaine Taylor brings out a plate of mini banana muffins and holds it in front of them. But old habits are hard to break. “Are they gluten-free?” asks Allison, a small girl wearing a ponytail and blue T-shirt.

“Of course! This is a gluten-free camp,” Taylor sighs.

The girl grabs one and immediately takes a bite. “Ooh, these are good!” she exclaims.

One of the older girls asks if there’s soy in the muffins, which she can’t have. Another inquires about dairy. “She’s dairy, I’m corn and soy,” clarifies a tall blond.

Unsure, Taylor goes to check in the kitchen, as Allison blurts out after her, “Can I have another one?”

It’s the first day of Celiac Camp, the only camp in Northern California especially for kids with celiac disease, and the only such free camp in the country. The four-day romp for kids nine to seventeen offers the usual activities — swimming, boating, kayaking, a dance, art projects, and movie night — except that all the meals are gluten-free.

The Taylor Family Foundation started Camp Arroyo in 2001 for kids who “fell between the cracks,” Taylor says. The program was first offered to children with HIV and AIDS, and expanded to include sessions for kids with heart disease, autism, and skin diseases. “Most of these families are so impacted by medical costs that there’s no way they can afford camp,” Taylor says, sitting on a picnic bench outside the mess hall.

Then, seven years ago, Taylor herself was diagnosed with celiac disease. At first, she was in denial. Then, after discovering how challenging the diet was, she went to the Stanford Celiac Conference where she learned that celiac families lacked support for their kids. It took three years, but Celiac Camp finally came together this past summer. In all, 125 people signed up, including counselors, med staff, and 85 campers. Most of the kids were from Northern California, although a handful hailed from as far away as Denver, Arizona, and San Diego. “You hardly ever see anyone else who has it,” Cameron, an eleven-year-old camper, says over a lunch of hamburgers on gluten-free buns with French fries, and cookies for dessert.

To prepare for the children’s arrival, Taylor had to clear the kitchen of all gluten-containing foods. Then she had to double-clean it and bake off any oven residues by twice firing them up at 500 degrees. She wrangled fourteen gluten-free food vendors into donating or selling their products at cost.

Kevin Dimler was one of the parents who convinced Taylor to start Celiac Camp. He’s a member of the Danville chapter of ROCK, or Raising Our Celiac Kids, a national support organization. His eleven-year-old son Keegan was diagnosed at two-and-a-half after having runny noses, intestinal problems, a hard stomach, and horrible diarrhea. Almost immediately after he was put on the diet, Keegan started growing at twice the normal rate. The whole family eventually tested positive for the HLA-DQ2 gene (see main story), and though no one else has celiac symptoms, they all eat gluten-free. Dimler says his own allergies subsided as a result.

On the surface, the Celiac Camp kids seem to have few medical concerns apart from their restrictive diets, but many went for years without being diagnosed, and failed to thrive as a result: Some of the twelve-year-olds, for instance, could easily pass for eight or nine. In addition, being gluten-free can lead to social stigmas. The new camp offers a needed break during which they don’t feel like outsiders. “It’s silly, you think it’s just a food issue. But think about the teenager who can’t go to pizza, or the birthday parties where you bring your own lunch pail,” Taylor says. “It’s all about community.”

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