Sharing knowledge, giving hope

International meeting brings wider attention to a little-known disease

August 14, 2000|By Scott Calvert | Scott Calvert,SUN STAFF

Benjamin Schlossmann, 8, totes the same gear to all his friends' birthday parties: a gift for the guest of honor, of course, and specially made pizza and cake for himself. That's because his body rejects foods made of wheat, rye and barley.

Benjamin has celiac disease, a little-known genetic disorder that prevents his body from processing gluten, a protein found in wheat, rye, barley and possibly oats. The only treatment is to avoid pizza, bread, pasta and ice cream - unless they are gluten-free - although experts say a cure might be just a decade away.

Dr. Alessio Fasano, a University of Maryland researcher who sponsored a four-day international symposium on celiac disease in Hunt Valley that ended yesterday, calls it the "most frequent genetic-based disease ever described in humankind."

Benjamin, embarrassed that he is different from other kids, sometimes waits until returning home from a party to eat. But with the special foods, at least he no longer has to endure the chronic vomiting and diarrhea that baffled doctors for years and made him miserable.

"Now I'm happy," he said yesterday, stylishly attired in cargo pants and adidas sandals.

Although past estimates have indicated that one in 7,000 Americans suffers from celiac disease, Fasano said he believes the incidence is closer to one in 150. Because it is assumed to be rare in the United States, Fasano said, doctors here sometimes fail to identify celiac disease for years.

If Fasano's estimate is accurate, Benjamin Schlossmann is one of about 2 million people in this country with the affliction. Celiac disease can damage the intestines and, left untreated, can lead to diabetes, osteoporosis or cancer, Fasano said.

"It's huge, and it's huge because the vast majority of people don't realize they have it," said the Fasano, 43, co-director of the University of Maryland Center for Celiac Research.

International meeting

Over the past four days, 500 celiac disease researchers and sufferers from around the world gathered at Marriott's Hunt Valley Inn to learn about recent research, sample gluten-free goodies - waffle cones, for example - and find comfort in one another.

The hotel restaurant prepared a gluten-free menu, and a priest at a nearby Roman Catholic church blessed rice-based communion wafers for those who could not eat the ones made of wheat.

"It's very rare to go someplace where he's safe," said Benjamin's mother, Ellen Mechanic-Schlossmann, who started Friends of Celiac Disease Research Inc. near their home outside Milwaukee, and who attended the symposium with Benjamin. "In our society, everything we do is based around food, and that's what makes it so hard."

Dan DuBravec, a 40-year-old engineer at Verizon Communications whose celiac disease was diagnosed seven years ago, drove his Pontiac with "CELIAC" license plates to the symposium, the first time the meeting was held in the United States. He said he chose to advertise his condition for two reasons: to increase awareness of the disease and to remind other sufferers that they are not alone.

With the number of diagnoses reportedly on the rise -including many cases involving adults - companies are rushing to offer gluten-free foods. Quebec-based Glutino says it has grown by double digits in recent years, as doctors in North America follow their European counterparts in treating celiac disease as a more widespread phenomenon.

Beth Hillson, a celiac disease sufferer, started the Gluten-Free Pantry in Glastonbury, Conn., seven years ago, after finding no gluten-free foods she liked to eat. "We want people to realize that eating a gluten-free diet doesn't mean bad food," she said.

Among Hillson's offerings is a mix for Danielle's Decadent Chocolate Cake, named after the daughter of Oakland Raiders quarterback Rich Gannon. His daughter has the disease.

Future developments

A modified diet may be the only treatment option today, but Fasano said there is promise on three fronts. Technology exists to produce genetically engineered gluten-free grain - though he conceded that the controversy surrounding genetically altered foods could prove problematic.

Another possibility is the development of a vaccine that would stop the immune system from attacking gluten as a contaminant. Finally, he said, genetic research could pinpoint the cluster of genes that causes celiac disease, leading the way to a cure.

"I will be shocked if in 10 years we don't have a solution," said Fasano.

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