Symptoms apparent but hard to diagnose

Around age 1, Jack Manning was losing weight and struggling to sleep, and his abdomen grew increasingly distended.

His unhealthy appearance even prompted his day-care provider to pull aside his mother, Kelly Brexler, and ask if she was feeding him properly.

For months, doctors had no answers, said Mrs. Brexler, who works in the Chattanooga office of U.S. Sen. Lamar Alexander, R-Tenn.

"He wasn't even on the growth charts," she said. "We were not understanding why someone couldn't fix it. ... I felt like I was doing something wrong."

It took about two years of doctor visits and tests for diseases ranging from lupus to the cancer neuroblastoma to rheumatoid arthritis before Mrs. Brexler got a diagnosis of celiac disease.

The autoimmune disorder, usually genetic, is triggered by exposure to gluten, a protein found in wheat, rye and barley.

One of the most common autoimmune conditions, celiac disease is also one of the most underdiagnosed, despite the availability of a blood test, according to the Celiac Disease Center at Columbia University.

"It is not hard to diagnose ... but the reality is a lot of primary care physicians out there don't think of it," said Dr. Drago Tolosa, the pediatric gastroenterologist who eventually diagnosed Jack at T.C. Thompson Children's Hospital.

Mrs. Brexler is the wife of Erlanger hospital president and CEO Jim Brexler, and Jack is his stepson.

The delay in her son's diagnosis and the resulting struggle to figure out the best way to strip gluten from a modern diet have led Mrs. Brexler to launch a local education and support group, Gluten-Free Chattanooga.

Gluten-Free Chattanooga will hold its first informational meeting on celiac disease Tuesday night at Erlanger hospital to help connect families dealing with celiac disease, share practical information and spread awareness among patients and physicians.

The disease, once thought a rare childhood disorder, is now estimated to affect 1 in 133 people in the United States, including children and adults, according to Columbia's Celiac Disease Center.

Gluten-Free Chattanooga co-founder Stacy Johnson, 33, said she went through more than 15 years of fatigue and discomfort before she learned she had celiac disease. She went on a gluten-free diet three years ago.

"It's hard to not have pizza or cupcakes. But after a two-week period (I was) feeling so much better," she said. "It's definitely worth the things you're giving up."

After her son was diagnosed, Mrs. Brexler said she went into "panic mode." She bought numerous books and hundreds of dollars' worth of expensive gluten-free products that the family ended up throwing away because they "tasted awful," she said.

Without the help of a dietitian, it can take someone more than a year to figure out a 100 percent gluten-free diet that is practical to maintain, she said.

"I want to come in and help people take that (down) to two months," she said.

Awareness has grown significantly over the past couple years, and the condition came in to the spotlight most recently with the diagnosis of talk-show co-host Elisabeth Hasselbeck of TV's "The View."

But some media coverage almost portrays the condition as a "fad diet" and seems to downplay the severe consequences of the disease, which can lead to an increased risk of cancer, Mrs. Brexler said.