"I didn't just nosh on a piece of challie. I could have, on Friday and Shabbos, two slices, three slices of challie at the same meal. And the same with bagels," he said.
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. CD is especially common among Jews, along with Italians, Irish, British, Scandinavians, Spaniards and Palestinians.
CD typically presents with multiple symptoms, which can include various stomach and digestive ailments, as well as anemia, weight loss, 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 can see a succession of physicians and specialists over an average period of 11 years before the true source of the illness is diagnosed, according to The Celiac Disease Foundation, which is holding its annual Education Conference and Food Faire on May 3 at Good Samaritan Hospital.
Before his diagnosis, Hier, 69, recalls a life filled with acid reflux disease, which doctors treated with prescription medication.
It could have been years before the true cause of his digestive problems was found, if at all. His condition was finally discovered when one of his grandchildren was diagnosed in 2003 after suffering from almost daily stomach cramps. The entire family underwent testing because the disease is passed on genetically, and Hier was found to carry the genetic markers.
Looking back, he's fairly certain he knows whom he inherited CD from in his own family.
"My father for sure had celiac," he said. "He had a very skinny face, drawn."
The disease can surface as early as 1 or 2 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.
Dr. Michelle Pietzak, a pediatric gastroenterologist with Childrens Hospital Los Angeles, says many celiacs remain undiagnosed because physicians get little nutritional training in medical school and the education doctors receive afterward is partly based on information from drug companies, which currently have no drug-offering incentive to discuss the issue, she says.
"Also, there is some skepticism on the part of the physicians," Pietzak said. "I've heard some physicians say, 'Oh, this is just a trend like low-carb or the Zone Diet,' and it's not. [A gluten-free diet] is the medical treatment for the condition. But the awareness still has a long way to go."
Elaine Monarch, executive director of the Celiac Disease Foundation, says she had symptoms growing up, but wasn't diagnosed until she turned 41, in 1981. She said doctors attributed her problems to anemia because she was female or bloating due to her stressful lifestyle as a busy mom.
"Then I got violently ill, and they thought I had food poisoning, and then they thought I had a parasite," she said.
When she was finally diagnosed, she said, the knowledge about the disease was so limited in the 1980s that she was told to stay away from bread, except for maybe a bagel on the weekends.
Studio City-based 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; a final ruling on the voluntary law is expected by August.
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. And 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 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.)
Bess says he fields requests for the Kollel L.A. guide from several non-Jews, and one woman has even asked to get a regular update each year. "She has said that she finds sometimes it's more accurate than what the companies report," he said.
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," 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.
Restaurants like California Chicken Cafe and P.F. Chang's China Bistro are now offering gluten-free menus, and Woodland Hills-based Your Dinner Secret recently launched gfMeals, a gluten-free catering service that can ship meals nationwide.
Kosher manufacturers Manischewitz and S'Better Farms have added gluten-free products as demand increases, and two local kosher bakeries are providing more choice of gluten-free baked goods.
Schwartz Bakery, which is supervised by the Rabbinical Council of California (RCC), has regularly produced gluten-free bagels, hot dog buns and hamburger buns that use potato starch instead of flour and yeast during Passover. But in the next several weeks, CFO Mark Hecht plans to offer a year-round line of fresh, gluten-free baked goods using ingredients like tapioca and almond flour.
Hecht acknowledges that the growing price of wheat flour makes alternative ingredients more attractive, but he says cost isn't what drove him to consider this new enterprise. The inspiration came from a customer whose son was diagnosed with CD.
"She was pleading with me," he said. "She came up to me, literally crying, saying, 'You have to do something. There's nothing for my son to eat. He doesn't like anything.' She made this happen."
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 knows a celiac who has a little bit of money, we had a business plan, put this together, and it just sort of happened."
The Sensitive Baker opened in Culver City in summer 2007 and by November Sandee Hier's foccacia had been included in Los Angeles Magazine's Food Lovers Guide alongside breads from such renowned local bakeries as Le Pain Quotidien, BreadBar and La Maison du Pain. The magazine declared it "divinely gluten free."
Sandee Hier, a former assistant teacher at Yavneh Hebrew Academy, is still getting used to the full-time demands of running a bakery, which is also supervised by RCC. But she says it's been a lot of fun.
"There's been this really unexpected demand," she said.
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). Since bread and matzah are ingrained in Jewish life, the inability to recite a blessing over either because it doesn't contain a small amount of the appropriate grain can impact religious observance.
While some people, like Bar Ilan University professor Yehuda Felix, have sided with two-rowed barley argument, the Hier family is confidently sticking with oats.
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.
"She's had stories of people coming in and crying because this is the first time they could make a Motzi in many years," he said of his wife.
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.
"It may be good enough for a brucha, but not good enough for my stomach," he said.
Hier said he's 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 gotta 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.
The Celiac Disease Foundation's annual Education Conference and Food Faire is meeting Sat., May 3, 9 a.m.-4 p.m. at Good Samaritan Hospital Mosley-Salvatori Conference Center, 637 S. Lucas Ave., Los Angeles. For more information, call (818) 990-2379.
For more information, visit
Celiac Disease Foundation
The Sensitive Baker
Gluten-Free Oat Matzos
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