What to do when keeping kosher is not enough

When the gluten-free meal at Pinemere Camp, a Jewish sleep-away camp located in the Poconos, didn’t pass camp director Toby Ayash’s taste test one recent evening, she made a beeline for camper Dani Wolfenson of Randolph. “Let’s get out of here,” she told her and took the 12-year-old to her own bunk where they feasted on gluten-free macaroni and cheese and ice cream. “That night, Dani got the TLC she needed,” said Ayash.

Dani has celiac disease, an autoimmune condition characterized by gastro-intestinal discomfort and bloating, among other symptoms. It cannot be cured, and those who have it must follow a strict gluten-free diet. Symptoms are triggered by ingesting wheat, barley, or rye, even in trace amounts. Reactions vary from individual to individual.

If Dani ingests gluten, she gets severe headaches, her face turns red, and purple rings form around her eyes. She also will have gastro-intestinal discomfort and get tired and achy. It can take days before she feels better.

Ayash understands; she has celiac disease, too.

The disorder is unlike most allergies sleep-away camps have learned to deal with, and some directors don’t realize what they must do to accommodate kids with celiac disease.

When Dani and her older sister, Sara, were diagnosed in 2007, their mother, Jennifer Wolfenson, planned to continue sending them to a private camp in upstate New York, which she declined to identify, that they had been attending.

The director had assured her the camp could handle the situation, but they had never had a detailed conversation about her daughters’ dietary restrictions and, as the summer approached, Wolfenson began to worry. “As it got closer to camp, I got nervous,” she told NJJN in a phone conversation. “I wanted my kids to be healthy. I called to tell the camp what they would need. They said, ‘We can’t do that.’”

In the end, she prepared and packed six weeks’ worth of pancakes, waffles, cookies, brownies, and muffins and sent bags of cooked pasta in individual servings to be heated in the microwave. She got no discount in fees for sending the food; she was made to feel, she said, as if she should just be “grateful they would take my kids, as if they were lepers.”

The camp took no special precautions, failed to educate themselves or the girls’ counselors, and both girls were often sick, Wolfenson said. Dani attended that camp for one more summer and called it quits.

As this summer approached, Dani didn’t want to stay home again but she wanted a camp where she could stay healthy.

Dani is now one of two campers with celiac disease at Pinemere.

‘Going overboard’

Many area sleep-away camps that serve the Jewish community accommodate children with celiac; among them is New Jersey Y Camps, which has taken youngsters with the disorder for more than a decade. This summer, director Leonard Robinson estimates there are five children with celiac disease. Recently, he upgraded efforts on their behalf at the urging of a parent who now volunteers at the camp, supervising celiac-related issues. Instead of kitchen staff preparing the celiac children’s food in a room off the kitchen, the camp hired someone to prepare meals for them in a separate building, to avoid airborne contamination of food. Someone also goes from child to child in the dining room to ensure there is no cross-contamination of the food.

“Are we going overboard?” said Robinson. “We’re doing a lot more now than we used to. But how can you go overboard when a child’s health is concerned?”

While youngsters with the disease do supply some of their own food at NJ Y Camps, the camp provides the rest.

Camp Ramah in the Berkshires, in Wingdale, NY, also accommodates kids with celiac disease. This summer alone, Ramah has 10 campers plus a number of staff members with the disorder or a similar wheat/gluten allergy.

This year, at the insistence of commissary director Aby Laznik, the camp purchased a dedicated freezer and pantry space in the kitchen for gluten-free products, according to Karen Legman Segal, an adviser at Ramah. “A gluten-free toaster, rice cooker, and pasta pot adds to the variety of foods offered while avoiding cross contamination,” she wrote NJJN in an e-mail. “Each gluten-free meal is prepared in advance, wrapped in plastic, and placed in a warmer. The commissary director in consort with a member of the camp’s advisory staff have trained and now rely on one of the kitchen staff to meet the needs of each celiac camper at each meal.”

The camp also accepts kosher gluten-free food shipments from parents, including snacks, frozen pizza crusts, desserts, and cereal. Ramah also provides acceptable pasta, rice bread, cereals, desserts, waffles, and pizza crusts.

Ayash recoils at the idea of making campers bring their own food; Pinemere not only supplies it but also tries to ensure that those with celiac disease are eating a permitted form of whatever the rest of the campers are eating. “If they’re eating pizza, we’re eating pizza. If they’re eating ice cream, we’re eating ice cream, so nobody feels different.”

She even stocks the canteen with celiac-friendly treats so the youngsters “don’t have to get the same bag of chips every time they go.” She added, “It takes someone who has it to be sensitive to all the issues.”

As Wolfenson said, “At Pinemere they make Dani feel she’s no different from everyone else, that it’s no big deal. And that’s all she’s ever wanted.”