This story in the NJ Herald News is a true love story. The love of a mother-in-law for the healthy life of her son-in-law.
I see this as a message of hope for all of us.
I haven’t yet tried the recipes but they really look good.
Navigating the gluten mine field
By JEAN STEVENS, HERALD NEWS | 02/27/08 02:11 AM
Ben Cappel takes a gluten-free mandel brot from his mother-in-law, Jane Grubin, at her Passaic home. (MICHAEL KARAS / HERALD NEWS)
PASSAIC — Jane Grubin pulled a sack of rice flour from her kitchen pantry one recent evening. Then millet flour. Then potato, organic buckwheat and almond flours. She rummaged for brown rice and tapioca flours, tucked near the egg-replacer, lecithin granules and xanthan gum. She keeps about a dozen types of flour at any given time, in case she needs them to whip up banana bread, cookies or mandel brot (a sort of Jewish biscotti) for her son-in-law and a frequent guest, Ben Cappel, whose body rejects anything made with traditional wheat flour.
“My kitchen has gotten considerably smaller because I’m always experimenting with all the flours,” said Grubin, 55, as Cappel and his wife, Miriam Grubin-Cappel, watched with amusement. Six years ago, Cappel, 29, was diagnosed with celiac disease, an autoimmune condition in which gluten (a protein found in wheat products, barley and rye) severely damages the intestines. Any food containing gluten, such as traditional pasta, bread or other baked goods, makes him terribly sick. He must eat gluten-free foods, a challenge for any cook. But Grubin can’t resist a challenge.
“I’ve always cooked, I’ve always baked,” she said. “It’s fun for me to think of something that works, something that’s not ghastly.”
Cappel appreciates her efforts.
SIGHTS & SOUNDS
MICHAEL KARAS / HERALD NEWS
* Gluten-free cooking: One family shows how they cook without gluten
(please enable pop-ups)
“I could be making dog food and he would say, ‘It’s good,'” she joked.
He’s lucky his mother-in-law is one of the best gluten-free cooks in the area, said Cappel, who also ranks his wife high on the list. (And she happens to live in a city that’s home to two independent stores, A1 Nutrition and Kosher Konnection, that sell plenty of gluten-free foods as well as the first chapter of a kosher-and-gluten-free support group, The Frum Celiac, founded by at least two dozen local people with celiac disease.)
Cappel should know: he’s become a pied-piper for the North Jersey/New York City’s gluten-free community, an organizer of a close-knit online network of about 1,000 people. Half the phone numbers kept in his cell phone, about 50, belong to celiac friends, restaurateurs, store owners and doctors in the area.
He’d been active in both the Northern New Jersey Celiac Support and the New York City Celiac Disease Meetup groups on the popular Web site, Meetup.org, for several years when, in 2006, he founded the Jersey City Celiac Disease Meetup group to link the city and New Jersey communities. Members navigate the gluten minefield in message-board posts, e-mails and monthly meetings. They share under-the-radar gluten-free products, restaurants with “safe” menus and new recipes.
In conjunction with gluten-free online blogs — the most famous may be CeliacChicks.com — celiacs thrive.
“When you’re first diagnosed, it’s, like, a very hard thing to adapt to,” Cappel said. “It took me forever to learn the ropes. (Now) all you need to know if you’re diagnosed with celiac is hook up with an online group, and it’s everything you’ll need.”
Cappel has plans for an activist community. He arranges gluten-free dinners at area restaurants. He’s organized gluten-free tastings and parties, including a Thanksgiving feast at the Gluten-Free Market in Fair Lawn, the only one like it in the world, he said. In January, he hired a bus for a trip to a Gluten-Free Vendor Fair; about 300 people from New Jersey and the tri-state area attended.
Cappel says he’ll do anything to spare someone the pain he experienced. After several years of stomach pains, exhaustion and a misdiagnosis of Crohn’s Disease, he finally was diagnosed. By then, he said, he had nearly died from intestinal damage.
The University of Chicago Celiac Disease Center estimates that about 1 in every 133 Americans has celiac, but 97 percent of them remain undiagnosed.
Many patients are oblivious to the “rash inside your intestine” caused by eating gluten, said Teresa Rivera-Penera, chief of pediatric gastroenterology at St. Joseph’s Medical Center. Instead of digestive pains like Cappel’s, they experience symptoms that range from skin rash (another form of celiac disease called dermatitis herpetiformis) to hair loss, attention disorder, weight loss or weight gain, irritability and fatigue.
Some people have problems with fertility, and children may fail to grow. With such wide-ranging symptoms, all signs of an autoimmune disorder, doctors often fail to connect the dots. For decades, celiac was considered extremely rare. Even now, the average celiac child visits eight doctors before being diagnosed, according to the Disease Center.
In the past five years doctors have tested for the disease more rigorously, said Mary Schluckebier, executive director of the Celiac Sprue Association (CSA). A blood test has made easier a diagnosis that used to require surgical removal of a piece of the intestine, an expensive and uncomfortable process.
Increased media coverage also has helped raise awareness. Many mainstream grocery stores, including ShopRite and Stop & Shop, created special sections to accommodate some of the 2,200 gluten-free products that comprise an $875 million industry, according to Packaged Facts, a market research company. The United States Department of Agriculture predicts that the gluten-free industry will grow 25 percent each year and that revenues will reach $1.7 billion by 2010. The FDA is set to rule sometime this year on a definition for a “gluten-free” product label.
The CSA receives about 1,500 phone calls to its hotline each month, Schluckebier said. But some questions, especially the “hows” and “whys,” she cannot answer.
“At this time, we know very little about autoimmune diseases except that (the immune system) fights itself,” Schluckebier said. “We are very much in a pioneering period of all autoimmune and digestive diseases.”
The cure they do know: eliminate all gluten from the diet. But that’s easier said than done. Many American staples — ranging from breads to beers to cakes — include gluten. And gluten-derivatives are found in thousands more products, from vanilla flavoring and soup thickeners to soy sauce and ketchup. Even the tiniest bit of gluten affects some celiacs — Cappel’s scalp becomes inflamed if he uses shampoo that contains wheat, a common additive.
A gluten-free life requires constant reading of food labels, a search for restaurants and grocery stores with gluten-free foods. Few doctors offer guidance. That’s where Cappel and online groups step in.
“Doctors don’t have any knowledge of living with this disease and how to find the best bagels,” he said. “So you need to call on this community of people who have been there, done that.”
One site, FrumCeliac.org, was launched last year in Passaic to serve the kosher community, said co-founder Moshe of Passaic, who uses only his first name to maintain his privacy. After three of his children were diagnosed with celiac, he and his wife felt the need for a reference and advocacy organization for celiacs who adhere to kosher food laws.
They plan to develop handout materials for schools, explaining kosher gluten-free food guidelines.
“The main thing is to not reinvent the wheel,” he said, “so people don’t have to start from scratch.”
Adapting to gluten-free eating can be very difficult for children, said Diane McGee, co-organizer of the Northern New Jersey Meetup group, whose 10-year-old son and 11-year-old daughter both have celiac. Picky eaters quickly become unhappy with the limited number of options, she said. Her family has learned to have fun with it, though — tossing yucky, rejected food brands to the birds.
“That’s the joke,” McGee said. “You don’t like it? That’s bird food.”
Children also have trouble understanding why they can’t eat what their friends eat – why, for example, birthday cake is a no-no or why they must pack special school lunches.
Schools have made efforts to accommodate allergies, but gluten intolerances remain fairly rare. Passaic cafeterias have a nut-free zone and a dairy-free table for children with nut and dairy allergies, said Robert Holster, the superintendent at Passaic Schools. But schools cannot guarantee a gluten-free environment; teachers, nurses and lunch aides are told to keep careful watch.
Holster is well aware of gluten-intolerance: His wife was recently diagnosed with celiac.
“I feel guilty when I sit down to the dinner table,” he said. “She’s in tears because I’m having pizza pie and she can’t.”
* The following recipes are from Jane Gurtman Grubin. Used by permission of Jane Gurtman Grubin.
LEMON POPPY SUGAR COOKIES
1-1/4 sticks unsalted butter
3/4 cup confectioner’s sugar
1-1/2 tablespoon poppy seeds
1 teaspoon lemon zest
1 cup almond flour
3/4 to 1 cup gluten-free flour mix (blend of 6 cups white rice flour, 2 cups potato starch and 1 cup tapioca flour)
1/4 teaspoon xanthan gum
3 egg yolks
Beat butter, sugar, poppy seeds and lemon zest until thoroughly mixed. Mix in flours and xanthan gum and beat until fluffy. Add egg yolks, one at a time, and mix until a fairly uniform dough forms. If it is too loose, add more flour. Form into a ball and wrap in waxed paper. Refrigerate for 1 hour.
Preheat oven to 350 degrees, and make sure shelves are positioned in the upper and lower thirds of the oven. Line cookie sheet(s) with parchment paper.
Roll dough into 1-inch balls and roll in granulated sugar. Place on cookie sheet(s) 2 inches apart. Wet the bottom of a round glass with water, then dip glass in granulated sugar. Use bottom of sugared glass to flatten cookies to about 1/2 inch or so.
Bake for 7 minutes in upper (and lower) third of oven. Reverse cookie sheet after the 7 minutes (from back to front) and bake for an additional 8 minutes. Cookies will be brown around the edges when done.
RICE KNEIDLACH (gluten-free ‘matzo’ ball)
1 package Paskez unsalted rice cakes (use 2 inner packages) – put in food processor and grind into meal that looks like matzo meal
3 tablespoons canola oil
3 tablespoons water
2 tablespoons powdered gluten-free soup mix (I use OSEM consommé)
1 tablespoons dill (fresh)
1 teaspoon nutmeg
1-1/2 teaspoons salt
1 teaspoon pepper
Mix eggs, oil, and water together (do not beat – use a fork). Mix in the rest of the ingredients until thoroughly incorporated. Place mixture in small bowl and cover. Refrigerate for about 15 to 20 minutes.
While the mixture is chilling, put up a large part of water to which gluten-free soup mix is added to make a broth. Bring to a rolling boil. Lower heat.
Remove mixture from refrigerator, wet hands, and roll small amounts into balls. Place “kneidlach” balls into the slowly simmering broth. Cover pot, and simmer for about 40 minutes.
GLUTEN-FREE BANANA BREAD
1cup almond flour
1 cup gluten-free flour mix (a blend of 6 cup white rice flour, 2 cup potato starch and 1 cup tapioca flour)
1/2 teaspoon xanthan gum
1 teaspoon baking soda
1/2 teaspoon salt
1/2 cup butter or margarine
2/3 cup sugar
1 cup mashed, very ripe banana
1 teaspoon gluten-free vanilla extract
1/2 cup milk (or soymilk, rice milk, almond milk)
1 teaspoon lemon juice
1/2 cup chopped nuts
Preheat oven to 350 degrees. Grease a 9- by 5- by 3-inch loaf pan. Mix almond flour, gluten-free flour mix, xanthan gum, baking soda and salt together. Cream butter with sugar until light and fluffy. Add eggs, banana and vanilla and mix well. Add lemon juice to milk. Alternately add flour mix and milk to banana mixture, beginning and ending with flour mixture. Stir in nuts.
Place batter in prepared pan and bake for 1 hour or until center springs back and toothpick inserted in center comes out clean. Cool on rack.
Reach Jean Stevens at 973-569-7131 or email@example.com.
Posted by JaneGG on 02/27/08 08:14 PM:
I thought this article very informative, and would like to thank Jean Stevens for taking the time to do such thorough research.
One change for the “Kneidlach” recipe: The rice cakes that one processes into “meal” – I have bought the 6-pack of Paskesz Unsalted Rice Cakes (4.2oz), but have also used Lundberg’s – one can use any gluten-free rice cake. Whatever is used, after processing you will have 2-1/2 Cups of “meal.” That’s the amount one should use for this recipe, no matter the brand.