As a teenager, Anna Quigg was tested for Lyme disease and lupus. She was told she had juvenile rheumatoid arthritis, irritable bowel syndrome and persistent anemia.
None of the diagnoses seemed to fully explain her gastrointestinal symptoms and joint pain.
“I went to a lot of different doctors,” said Quigg, 33, of Catonsville.
It wasn’t until years later that she was tested for — and diagnosed with — celiac disease.
People with celiac disease can’t eat foods with gluten, which is found in wheat and other grains, because it causes an autoimmune reaction that destroys parts of the small intestine. Symptoms include gastrointestinal problems such as abdominal pain and diarrhea, irritability, join pain, anemia and fatigue.
Quigg shared office space with someone who worked with Dr. Alessio Fasano, head of the University of Maryland Center for Celiac Research. Her co-worker suggested the symptoms that were keeping Quigg from enjoying lunch out was celiac disease.
In the five years since her diagnosis, Quigg has watched awareness of the disease grow — and her own life change.
After starting a gluten-free diet, she could actually go out to a movie after dinner with her husband, where before she often went home early feeling sick.
“It’s amazing,” she said. “In the first three weeks, I thought, ‘This is what normal feels like.'”
Getting used to a gluten-free diet is one of the hardest parts of being diagnosed with celiac disease, said Rachel Williams, a volunteer for the national Celiac Disease Foundation, which offers support for the newly diagnosed.
“I try to focus on what you can have,” said Williams, of Finksburg, whose son was diagnosed when he was about 15 months old. “I try to focus on corn, rice and potatoes. It’s all about knowledge.”
For a while, Williams kept a four-page printout from support Web site www.celiac.com that listed foods and ingredients her son couldn’t eat.
The gluten-free food market in the United States is estimated at about $700 million and could reach about $1.7 billion by 2010, according to research by Packaged Facts.
“The quality and quantity is astonishing,” said Fasano.
Despite the abundance, a gluten-free diet is restrictive, and patients are anxious for a cure, he said.
Fasano said researchers are “darn close” to finding a cure. Clinical trials are centered on a feature of autoimmune diseases called a leaky gut, where molecules that cause the disease can break through the barrier of the gastrointestinal tract. Results from one phase of the trials should be available soon, he said.
“Fixing the barrier dysfunction,” Fasano said, “is what we are focused on.”
