Plainfield group serves up food, information and support to patients with celiac disease

PLAINFIELD – Celiac patients: If you attend a Gluten Free Wikaduke Support Group meeting, expect to eat.

A major focus is food and food preparation, said Tracy Caswell, of Shorewood and a group co-founder, said. This may include cooking demonstrations and dietitian guest speakers, along with sharing recipes and offering tips about gluten-free products and restaurants that serve gluten-free menu items.

“We’ve even done beer tasting,” Caswell said. “Everyone brings in a bottle of favorite beer – or buys one they’d like to try – and we do little shot glasses of beer.”

Small wonder the group pays strict attention to food. According to Mayo Clinic, celiac disease "is an immune reaction to eating gluten, a protein found in wheat, barley and rye," which can cause intestinal damage.

Celiac can’t be cured, but patients can manage the disease and promote intestinal healing by strictly following a gluten-free diet, according to Mayo Clinic. But that’s where it gets tricky – and where Gluten Free Wikaduke Support Group seeks to help.

Especially when it seems the world has jumped on the gluten-free bandwagon, Caswell said the group gives attendees the right knowledge to care for themselves and recipes so they don’t feel deprived.

The first year after diagnosis is the most challenging – and depressing, Caswell said. Because the odds are most favorite birthday foods and traditional holiday foods contain gluten.

But the support group will help participants learn how to make gluten-free versions of grandma’s sugar cookies and gluten-free options for Easter brunch, Caswell said.

“We tell our participants, ‘If you can make it through the first year, you’ll be fine,’” Caswell said. “After that, it gets a lot easier.”

A depressing diagnosis

Pat Carroll of Crest Hill was tested for celiac disease after her son and granddaughter were diagnosed with it. The diagnosis came as Carroll was nearing retirement and looking forward to traveling.

“I didn’t want to go to any events with food,” Carroll said. “I won’t pay $30 when all I’m going to touch is the salsa, maybe.”

Through joining Gluten Free Wikaduke Support Group, Carroll learned how to read labels, how to advocate for herself in medical situations (certain medications and dental preparations may contain gluten, she said) and how to bring her own food to gatherings, when necessary.

Carroll no longer shuns social events.

“We’re just very, very careful,” Carroll said.

A serious disease – and hope

Mary Boris of Plainfield, Gluten Free Wikaduke Support Group co-founder, said loved ones often don’t understand how serious celiac disease is.

“At first, it seems very isolating,” Boris said. “That’s the best part of the support group. We’re all in it together; we all have the same feeling. The longer you’re a celiac, the more you get to know people who understand. You feel safe with them.”

Boris was diagnosed in 2002. Caswell was diagnosed in 1998. They founded the group in 2006. If someone poses a question they can’t answer, Boris said she turns to the University of Chicago Medicine Celiac Disease Center, where she volunteers.

Caswell said that if celiac patients are avoiding gluten and still feeling unwell, to check with their doctors. That doesn’t mean the diet isn’t working. They may have another condition in addition to the celiac, which happened to Caswell.

Patients who participate in a support group may be more compliant with the diet, Caswell said. Caregivers and parents of celiac children are also welcome to join, she added.

“We’re an opportunity to keep people on task,” Caswell said “We answer questions and offer support in a social environment. And if anyone comes to the meeting, the first thing we will probably do is eat.”

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IF YOU GO

WHAT: Gluten Free Wikaduke Support Group

WHEN: 10 a.m. to noon May 6

WHERE: Edward Plainfield Outpatient Center, 24160 127th St., Plainfield

ETC: Monthly meeting. Free.

INFORMATION: Email glutenfreewikaduke@gmail.com or visit glutenfreewikaduke.blogspot.com.

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KNOW MORE

According to Mayo Clinic, doctors may order two blood tests to help diagnose celiac disease:

• Serology testing looks for antibodies in your blood. Elevated levels of certain antibody proteins indicate an immune reaction to gluten.

• Genetic testing for human leukocyte antigens (HLA-DQ2 and HLA-DQ8) can be used to rule out celiac disease.

If test results indicate celiac disease, doctors may use an endoscopy to view the small intestine and to take a biopsy to assess damage to the villi.

For a comprehensive look at celiac disease, current research and opportunities for free testings, visit the University of Chicago Medicine Celiac Disease Center website at www.cureceliacdisease.org.