Coping With Celiac Disease
Tips to following a gluten-free diet.August 28, 2009
The Jewish Journal of Greater Los Angeles
Rabbi Marvin Hier fondly recalls bakery-fresh buns and muffins in his lunch when he attended yeshiva. He also admits to a penchant for challah.
“I didn’t just nosh on a piece of challah. I could have, on Friday and Shabbos, two slices, three slices of challah at the same meal. And the same with bagels,” he said.
Rabbi Hier hasn’t eaten challah, let alone matzah, in several years. But this bread-free existence isn’t part of some Passover-inspired, Atkins-style diet. The founder and dean of the Simon Wiesenthal Center was diagnosed with celiac disease (CD) more than four years ago.
CD, also called celiac sprue, is an autoimmune disorder, like Crohn’s and multiple sclerosis. The ingestion of gluten—a protein in wheat, rye and barley—leads the immune system to identify the lining of the small intestine as a foreign object and mounts an attack, hampering the body’s ability to absorb nutrients.
The disease was thought to be rare, but it is now believed that 1 percent of the population—roughly 3 million people in the United States—have the condition, according to the Center for Celiac Research at University of Maryland School of Medicine, in Baltimore.
CD typically presents with multiple symptoms, which can include various stomach and digestive ailments, anemia, weight loss, and depression or anxiety. The disease can also increase the risk of infertility, osteoporosis, arthritis, Type 1 diabetes, liver disease and certain types of cancer, like esophageal cancer and intestinal lymphoma.
Diagnosis can be challenging, because many medical professionals are not familiar with CD, and its symptoms overlap with other diseases. Research has shown that a “celiac,” a person with CD, can see a succession of physicians and specialists before the true source of the illness is diagnosed, according to The Celiac Disease Foundation.
Before his diagnosis, Rabbi Hier, 69, recalls a life filled with acid reflux disease, which doctors treated with prescription medication. His condition was finally discovered when one of his grandchildren was diagnosed after suffering from almost daily stomach cramps. The entire family underwent testing because the disease is passed on genetically, and Rabbi Hier was found to carry the genetic markers.
The disease can surface as early as one or two years old or can suddenly appear in women in their 40s. There is no cure for the condition and no pill to alleviate symptoms. While a few drug manufacturers are attempting to develop a vaccine, only a strict diet free of gluten can ease symptoms.
Elaine Monarch, executive director of the Celiac Disease Foundation, said she had symptoms growing up, but wasn’t diagnosed until she turned 41. When she was finally diagnosed, in the 1980s, she said that knowledge about the disease was so limited that she was told to stay away from bread, except for maybe a bagel on the weekends.
The Celiac Disease Foundation has been a key player in helping the Food and Drug Administration adopt rules about how to define “gluten free” on product labels as part of the Food Allergen Labeling and Consumer Protection Act.
Shopping for food, toiletries and medications can be confusing for those with celiac disease or other gluten-sensitive conditions. Wheat can be listed on labels in different forms: modified food starch, rusk, edible starch, cereal binders, cereal filler, thickener. A similar problem exists for rye and barley.
To help clear up some of that confusion, many celiacs turn to gluten-free blogs and online message boards for answers. If you Google the name Rabbi Gershon Bess, at the top of the list is mention of his “Passover Guide to Cosmetics and Medications” on http://www.Celiac.com .
The annual report features products like toothpaste, denture cream, vitamins and over-the-counter drugs that are free of wheat, barley, rye, oats or spelt. (Gluten is too large to be absorbed through the skin, so cosmetics do not pose a problem for most celiacs.)
Increased celiac consciousness among corporations has benefited kosher consumers during Passover by reducing the inclusion of wheat, rye and barley in foods.
“The companies are very sensitive to the needs of the celiac patients, which makes our job easier,” Rabbi Bess said. “If they had a choice between corn or wheat starch, they would definitely go with the corn.”
Gluten-free products are typically more expensive than their traditional counterparts, but demand has increased steadily over the years. Sales of gluten-free items are expected to reach roughly $1.7 billion by 2010, according to market research publisher Packaged Facts.
Some restaurants are now offering gluten-free menus; kosher manufacturers Manischewitz and S’Better Farms have added gluten-free products as demand increases; and gluten-free bread is sold in supermarkets.
Baking gluten-free products isn’t easy. Trying to replicate the taste or texture of muffins, rolls and breadsticks, let alone challah, without wheat flour takes patience and a desire to experiment.
Sandee Hier, daughter-in-law of Rabbi Marvin Hier, started baking gluten-free challahs after he was diagnosed with CD. Before long she was baking challahs for children to take to school, and families approached her about baking other products.
“There wasn’t anything, and people kept asking,” she said. “My father-in-law knew a celiac who had some money, we had a business plan, put this together, and it just sort of happened.”
Because her products are pareve, she counts among her clientele the parents of autistic children, who turn to gluten-free, casein-free products as a dietary intervention, as well as people diagnosed with Crohn’s disease, ulcerative colitis and multiple sclerosis.
“That’s a big market for us,” she said.
But baking gluten-free challah is not without some controversy. Four of the five grains identified by Jewish law as kosher for challah and matzah contain gluten (wheat, barley, spelt and rye), and a fifth is a source of debate, depending on how the word shibbolet shual is translated (Rashi views it as oats, a naturally gluten-free grain, but Rambam interprets the meaning as two-rowed barley, which contains gluten.)
Rabbi Aron Hier, director of the Simon Wiesenthal Center’s campus outreach and Sandee Hier’s husband, said he has reviewed the literature and is convinced it’s oats.
During Passover and when he’s observing Shabbat away from home, Rabbi Marvin Hier frequently turns to an oat shmura matzah, made in England. He says the matzah tends to crumble and doesn’t compare to anything his daughter-in-law bakes.
Rabbi Hier said he has had to make serious adjustments to his diet and carefully inspects food labels before he eats something. “Believe me, it took getting used to. But I was very determined. If this is what you have, you have to have a different lifestyle and change your food habits,” he said.
Now when he eats outside of his home he asks a lot of questions. If he visits a restaurant, he quizzes the wait staff about whether flour was used in the soup. Before he digs into a plate full of French fries, he asks if anything breaded was fried in the same oil. Even minute amounts of flour can affect him.
“It required a different attitude, a change of eating habits, and now I feel tremendous,” he said.
For more information, contact the Celiac Disease Foundation at its Web site, http://www.celiac.org .
For information on gluten-free oat matzot, visit the Web site http://www.glutenfreeoatmatzos.com .
Adam Wills is senior editor of The Jewish Journal of Greater Los Angeles.