May 1, 2008
When challah becomes the bread of affliction
"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."