Cyclists pedal their message across country

Published 12:00 am Tuesday, June 6, 2006

The Selma Times-Journal

Earl Ley is bicycling across the country to raise awareness of a little-diagnosed disease that affects millions of people.

More than three million people in the United States may have celiac disease, a condition that is considered a food intolerance, rather than a food allergy, according to an article in the June issue of Reader’s Digest magazine.

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To help people become better familiar with the disease, 63-year-old Ley and fellow bicyclist Paul Chiusano are crossing the South along Highway 80, which brought them right through the center of Selma Monday morning.

“In phase one of the ride last fall, we biked from San Diego to El Paso,” Ley said. “We picked it up in El Paso May 2 and will go Highway 80 to Savannah and hit the Atlantic Ocean.”

Their plan is to be in Savannah by June 12. The pair are riding 50 to 60 miles a day, which takes them five or six hours. They camp out at night, or stay with friends.

“People ask what we’re doing, and I kind of tell them a little bit about celiac disease. Maybe one in 20 have even heard of it.”

Symptoms of the disease include chronic fatigue, diarrhea, anemia , weight loss, depression, bloating, constipation, migraines and even infertility and miscarriages.

“The classic symptoms are not thriving – being undernourished and tired,” said Ley, a nine-year veteran of celiac disease. Some children can even have stunted growth and moodiness, he said.

Celiac disease is an autoimmune response, meaning that the immune system of a person living with the disease actually begins to attack the small intestine and nutrients are not properly absorbed.

Living with celiac disease is “a black hole,” Ley said. “Emotional problems are caused by it as well because the brain is not getting nourished.”

A blood test and subsequent biopsy can reveal whether or not a person has the condition. The treatment is a “medically-directed” diet, which requires a person to eliminate all sources of gluten from their diet- including wheat bread, standard pasta, pizza, cereals, even canned soups and beer.

The Reader’s Digest article warns people that a self-diagnosis can actually be harmful because taking foods out of the diet to find relief can lead to a nutritional imbalance.

One of the things Ley wants to accomplish with his ride is to encourage medical providers to check patients for the disease. While it has been under-diagnosed and was once thought to be a rare disease, celiac disease is now considered to be common, Ley said.

According to information provided by Ley, the disease affects 1 in 133 people, making it as common as Type 1 diabetes and more common than multiple sclerosis.

Despite this, it sometimes takes an individual years to get a proper diagnosis.

“Someone might suffer for 10 years without knowing what the diagnosis is,” Chiusano said.

Living with a gluten-free diet, while difficult, is becoming a little easier thanks to health food stores and companies that are now beginning to offer wheat-free breads and products.

As for their ride, people have “treated us wonderfully” on the road,” Chiusano said. “Drivers have been very courteous.”

The cyclists planned to make it to Maxwell Air Force Base by Monday evening.

For more information on celiac disease, check out or