GIVING UP GLUTEN
By Barbara Bensoussan
Courtesy of Family First Magazine
Pesach was only a few weeks ago, but for most of us, the work of ridding the house of every speck of chometz, switching into a different mode of cooking, and giving up favorites like pizza and danishes, is a distant memory.
But imagine that you had to switch your kitchen over for Pesach…and never switch back! That’s basically the situation Adina Lederer found herself in almost two years ago, when not one, but two of her children were diagnosed with celiac disease (CD).
“Celiac is an autoimmune disease in which a person cannot process gluten,” Adina explains from her home in Bergenfield, New Jersey. “Gluten is present in wheat, barley, rye, and most oats. If a person with CD ingests foods with gluten, he damages the villi (small hair-like protuberances lining the small intestine that absorb nutrients) and won’t be able to absorb his food.”
Adina, who was a third grade teacher for many years and is now a parenting coach, speaks in a self-assured, pragmatic manner. “CD is estimated to affect one out of every 133 people,” she says. “There’s no medication for it. It can only be controlled through diet.”
She emphasizes that celiac disease is different from an allergy or sensitivity to gluten, because celiac disease actually damages the stomach, and the consequences range from stomach pain and cramps to arrested growth and weight gain. “The constant pains and lack of nutrition can even affect one’s moods,” Adina explains. “No child can cope very well under those conditions.”
Fortunately, Adina’s pediatrician was sharp enough to run the right tests when she reported her children’s symptoms. Once one child tested positive, a second child’s symptoms—which had been misinterpreted as a possible lactose allergy—suddenly made sense. In fact, the entire family had to be evaluated.
The news that half her children had celiac disease hit hard. “Adopting a gluten free lifestyle was stressful,” avers Adina. “You have to figure out what you need to do on the physical level, and then you have to emotionally absorb the idea that your whole life will change.”
It’s not an easy pill for kids to swallow either; imagine telling your pizza and cookie loving children that they’ll have to give up their favorite foods—forever. “Eating gluten free isn’t like going on a diet,” Adina warns. “You can’t cheat. Even the smallest amount of gluten can do damage. My older one will get stomach problems; the younger one won’t feel it, but it will damage his intestines nevertheless.”
While Adina had been accustomed to cooking fresh, healthy family suppers most of the week, many of which were celiac-friendly, she says the real challenge lay in snack foods, convenience suppers, and eating out.
Gone were the days of grabbing a donut, a bagel, grilled cheese sandwiches, macaroni. While Adina threw herself into networking, and slowly discovered lists of permitted items and gluten-product substitutes, she realized that last-minute menus were a thing of the past.
“I learned that I always had to be one step ahead of the game,” she says. “I had to have my kitchen stocked with the right ingredients. My older son was seventeen, the other twelve, and they needed to eat, and eat well!”
The help that poured forth from family and friends was invaluable. “we have great friends. They dropped off recipes, gluten free challos, helped out in many ways. It’s so important to connect to other people in the same situation, who can share product information, recipes, and sources for products.
Socializing with Celiac
What about socializing in other people’s homes—visiting Bubby and Zeidy, going to friends for a Shabbos meal? “My family and friends learned that if they made cholent for us, first they have to clean the por really well so there’s no residue of gluten,” Adina says. “Then the barley has to be replaced with something else—I use brown rice instead.” In general meat meals are easier to prepare gluten free than dairy meals.
For a teenage boy, navigating social situations while dealing with celiac presents many hurdles. “It’s really hard to send your son to a bar mitzvah and know he won’t be able to eat most of the food,” Adina says. “Some kid-friendly foods, like French fries, aren’t a problem if they’re cooked alone. But if they’re fried in the same oil as the chicken nuggets, which have a coating, they become ‘contaminated’ are no longer safe to eat.”
Going to camp presents similar problems. Adina has since discovered that some places accommodate gluten free diets. However, there are many situations where she has to send special food for her sons. Now that her oldest son is finishing high school, she’s already thinking ahead to when he’ll be spending a year learning in Eretz Yisroel, and how she’ll accommodate him. Still, she refuses to let diet dictate her family’s choices. “You choose your goal first, then you work around it,” she maintains.
She’s also been diligent in teaching her kids to advocate for themselves. Unlike most of her friends, they’ve acquired the reflex to think about more than the right brachah before they put something into their mouths. And having to confront this challenge, avows Adina, helped her sons gain a certain maturity.
The world of gluten free cooking
If you can’t use anything made out of wheat, barley, rye, and many oats, what’s left to cook with? Flours can be made out of rice, quinoa, and beans; there’s also corn meal and our old Pesach friend, potato starch. “I make Pesach food all year long,” Adina says wryly. (On Pesach, by the way, the boys eat two types of special gluten free matzoh—one imported from England and the other made in Lakewood—that are made from uncontaminated oats.)
Adina learned to read food labels and keep up on celiac newsletters. She ferreted out sources of gluten substitutes the same way we look for substitutes for dairy in parve baking. She learned to decipher the code words every celiac needs to know; for example, “malt” is made from barley, and is thus a no-no. Certain nosh foods that appear innocent enough, like licorice and sour belts, and even some chocolates, contain wheat, while ominous sounding breakfast cereals like Chex and Cocoa/Fruity Pebbles are perfectly okay.
The trickiest part is avoiding “contamination”, which means that even tiny amounts of gluten products must not mix in with gluten free food. Adina does keep one shelf of foods containing gluten for those in the family who can eat it. But she has to supervise to ensure that no mixing takes place, with the same kind of care the rest of us exercise when we make Shabbos in our Pesach kitchen while eating challah in the dining room.
The Lederers go through such gymnastics every Shabbos, when they make hamotzie on a small amount of Challah and then whisk away the bread and crumbs. “I haven’t yet found a good gluten free challah, and I never baked my own in the past,” Adina sighs. “But that’s one of my projects for this summer; I’m going to learnt o bake a really good gluten free challah.”
“most gluten free baked goods are pretty good,” she admits. “there are some delicious bread mixes and frozen breads—their brachah is shehakol. There are wonderful brownie mixes for those times the kids announce their friends are coming over Shabbos afternoon at the last minute. Peach brownie recipes are also great!” (She does note that many of these gluten free items, while often healthier that their junk food equivalents, are also more expensive. “I can’t enjoy those two for one pasta sales anymore.”)
Adina has made a conscious decision to keep her attitude positive, focusing not on what her family can’t eat, but what they can. “Our Shabbos table looks like everyone else’s, minus the bread,” she says. “We don’t tell ourselves, ‘We’re eating gluten free food’; we say ‘we’re eating delicious food.’ I’ve found gluten free frozen pizza crusts, and in the summer we barbeque a lot; I’ve even found gluten free hamburger buns!”
“Lots of things in life don’t go the way we expected, or the way we wanted them to,” she says. “But you can’t just run away! We do what we have to for our kids.” And she was rewarded by a glowing doctor’s report: six months after making the switch, the children’s health scores were back to normal, and they suffered no ill effects. This, for the Lederers, was proof positive that continuing with a gluten free diet is the best remedy for assuring the continued health of their affected children.
“Look,” Adina concludes, “Everybody has something they have to deal with. But every problem has its solution.”