Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=99719
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Celiac Disease awareness rises with free testing

by Laura Schocker
Oct 02, 2008


 Laura Schocker/MEDILL

People diagnosed with celiac disease can't eat gluten, which is found in wheat, barley and rye.

People used to call Sarah Sapperstein "the machine."

She often wore braces on her ankles, knees, back, shoulders, wrists and elbows. For 13 years, doctors suggested causes from lupus to rheumatoid arthritis to Lyme disease before settling on a misdiagnosis of multiple sclerosis.

But last year, Sapperstein, now 25, walked into a free blood testing at the University of Chicago and found her answer: celiac disease.

“It got to the point where no one knew what was wrong with me so people just said I was depressed or that I was making it up,” Sapperstein said. “Now I could actually have the power to control my life again. It wasn’t going to get worse, it was only going to get better.”

And Sapperstein isn’t alone.

This week marks the beginning of Celiac Awareness Month. Since 2001, the Celiac Disease Center has offered a free blood test, which is how Sapperstein first learned she may have the disease, to 500 people.   This year the event, including a question-and-answer session with a panel of experts, will take place on  from 8:00 am until noon  Oct. 18.

Celiac disease, which is estimated to affect one in 100 Americans, is an inherited disease where gluten, which is a protein found in wheat, barley and rye, attacks the small intestine, said Carol M. Shilson, Executive Director of the University of Chicago’s Celiac Disease Center. Scientists suggest that only about 3 percent of people with the disease are diagnosed.

“There’s a huge population out there going around with the active disease that haven’t been diagnosed yet,” said Shilson, who found out she had the disease herself about seven years ago, after 20 years of misdiagnosis.

The disease is associated with nearly 300 symptoms, which can involve unexplained anemia, fatigue or joint pain. The more typical symptoms are gastrointestinal, which typically include chronic diarrhea, bloating or nausea, Shilson said, adding that experts estimate that 70 percent of people with the disease have no symptoms at all, although the damage is still going on inside the body.  Family history also dramatically increases the likelihood of having the disease.

Celiac disease has been around for thousands of years, but, until recently, many American medical schools taught that it was rare, Shilson explained. Over the past several years, awareness has grown for the disease.

The condition  is detected with 98 percent certainty through the blood test taken while the patient is maintaining a normal diet and confirmed through a biopsy of the small intestine.

At this point, there is no medical treatment for celiac disease, and those who suffer from it must follow a gluten-free diet. While organizations such as the Celiac Disease Center are working with the Food and Drug Administration to develop specific guidelines for identifying gluten-free foods, right now people have to double-check ingredient lists and trust that there were no cross-contamination.

As awareness rises about gluten-free diets, restaurants and manufacturers in the Chicago area are working to provide new options. “The manufacturers of gluten-free foods are seeing the potential market out there,” Shilson said. “A lot of big companies are starting to see the light.”

But even as awareness grows, Sapperstein said finding gluten-free options around Chicago is still one of the biggest struggles she has faced since diagnosis.

“For me the most frustrating thing is just the convenience factor, always having to be ‘that girl’ in restaurants,” Sapperstein said, describing what she does when eating out. “You can go in and make as many requests as you want, but that doesn’t always get things done.”

Yet, ultimately living gluten free is worth it for Sapperstein, whose doctor said her neurological symptoms can clear up completely within five years of adopting the new diet. She first started to see results after six weeks.

“I was walking up stairs for the first time probably at leisure,” she said. “That was really amazing.”

For more information on the free blood screening, call the University of Chicago’s Celiac Disease Center at 773-702-7593.