Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=101239
Story Retrieval Date: 12/9/2013 9:09:40 PM CST
Laura Callahan’s daughters always bring their own cupcakes to birthday parties.
Callahan and her children Emily, 10, and Nora, 5, of Northbrook, can't eat foods with wheat, barley or rye because they have celiac disease. Celiac disease is an inherited autoimmune condition where the protein gluten -- found in these grains -- attacks and ultimately destroys the small intestine.
“It’s hard when you’re at a birthday party and everybody’s eating chocolate cake and you’re eating the frosting,” Callahan said of the family’s gluten-free diet. “Some days are harder than others, but we survive.”
And now they’re working to share what they’ve learned this past year about life with celiac disease. All three attended a free blood screening and informational fair at the University of Chicago’s Celiac Disease Center recently. Celiac disease is estimated to affect one in 100 Americans. But 97 percent remain undiagnosed despite a variety of symptoms, said Carol M. Shilson, executive director of the disease center.
Before last November, Callahan was one of them.
“I thought I was being a good mom by adding wheat to all of our food,” Callahan said, explaining that she used wheat flour in recipes from pancakes to banana bread. But the diet changes ended up making her sick.
More than 300 symptoms are linked to celiac disease, with the most common involving gastrointestinal problems such as diarrhea, bloating and nausea, Shilson said. Many people experience no symptoms, though the illness may still be causing harm. A blood test detects the disease while a biopsy of the small intestine confirms it.
Callahan’s doctor diagnosed her with celiac disease. The disease runs in families and, once a sibling, parent or child is diagnosed, the likelihood of immediate relatives having the disease jumps to one in 22. Both Callahan's daughters tested positive for the disease as well. Of the four of them, only her husband doesn't have the illness.
“We meet the statistic full force,” Callahan said, adding that she brought along other family members to be tested at the University of Chicago.
Callahan’s family attended the weekend event with more than 800 people who came for the screenings, question and answer session with a panel of four experts and an information fair of 20 vendors offering food and services to people living with celiac disease. About 500 people were screened for the disease, including Callahan’s father, Jim Mazurek, of Northbrook.
So far, Mazurek said he hasn’t had any adverse symptoms from gluten, but that his close-knit family has been going gluten-free when everyone gets together since Callahan was first diagnosed.
“No one wanted her to feel she was the odd one out,” he said. “We support her very much.”
And Mazurek himself is no stranger to diet-changes—he switched to a low-fat, salt-free diet more than a decade ago. But it’s harder for the children in the family, he said.
“You don’t want to be different from everybody,” Mazurek said. “You can’t have pizza, a hot dog, a hamburger.”
But vendors at the screening featured gluten-free substitutes and free samples, ranging from cupcakes and cookies to pizza and cereal. And as more restaurants in the Chicago area are offering gluten-free choices, life may become a little easier for people with celiac disease.
Vendors included Deerfield’s Bakery, with locations in Buffalo Grove, Deerfield and Schaumburg, offering gluten-free cookies that people could decorate themselves at the testing.
The bakery prepares and packages wheat-free options at their Buffalo Grove location so that the non-gluten-free items don’t contaminate the gluten-free options.
“Our whole philosophy is, we want the ‘wow factor,’” said Lisa Albertson of Deerfield’s in explaining the commitment to keep the food tasting good, even without traditional ingredients.
Working to offer tasty gluten-free food is also what keeps regular customers coming to Swirlz Cupcakes in Lincoln Park, said Valerie Baehl, who works at the bakery. Swirlz offered towers filled with its gluten-free cupcakes at the screening.
“Blind taste test, I can’t tell the difference,” Baehl said of the differences between the gluten-free cupcakes and the regular ones made at the store. Swirlz uses a rice tapioca-blend flour instead of regular flour to offer at least two different flavors of gluten-free cupcakes every day, all topped with the bakery’s whipped Italian butter cream icing.
Shilson said vendors such as Deerfield’s Bakery and Swirlz are always a crowd-favorite, especially since may families come to the screening with at least one person who has already been diagnosed.
“It’s so hard to find a place where you can eat out safely,” said Shilson, who has celiac disease herself.
Those who were screened will learn the results of their blood test in three to four weeks, Shilson said. Each year, about five percent of the people who attend the screening test positive. She hopes these numbers will help to chip away at the millions of people who remain undiagnosed. The center is working to make the screening national by next year and, in the mean time, is focused on educating more people about celiac disease. Melissa Heeres, of Chicago, volunteered at Saturday’s event to help with that goal.
When Heeres was first diagnosed with celiac disease last May, said she felt frustrated and lost. She was the first patient her doctor had diagnosed with the illness and her dietitian didn’t have any helpful advice for how to maintain her new diet.
A phone call to the Celiac Disease Center was the first step to learning how to live with celiac disease, she said. Some of the adjustments are more difficult and expensive—such as combining five or six different types of flour to get the texture and consistency of one, she said. But Heeres finds comfort in staying positive and guiding people who are newly diagnosed to find the resources they need.
“I’ve had times when I really want that donut. I have to go, ‘Ok, I can eat this and be really sick,’” she said. “I try not to think of it as a challenge. It’s all in the attitude.”