When you hear the words “clinical trials,” what immediately comes to mind? For many, it invokes a feeling of a science lab, microscopes and petri dishes. Others think of clinical trial participants as “guinea pigs.” Candice Graciano, however, knows these stereotypical ideas couldn’t be further from the truth.
In September 2012, Candice experienced a serious decline in her health. A once active and energetic person, she began to suffer from severe fatigue, eye pain, migraines, heartburn and lower abdominal pain. The combination of symptoms slowed her down and she found herself missing out on things she once loved to do.
By February 2013, Candice received her celiac disease diagnosis. “Within about two weeks of going gluten-free, I felt amazing,” she recalled. “My symptoms vanished, my energy was back and I was able to get back to working out and all the things I’d been too exhausted to do before my diagnosis.”
About 3-4 months after her diagnosis, however, Candice’s symptoms started all over again. With the help of her husband Mike, she quickly connected the return of her symptoms to cross-contact from a local restaurant she frequented. Around the same time, Candice began to notice conversations about a clinical research study for people with celiac disease on Facebook. “I noticed the study information often and decided to check it out for myself.”
After filling out an online screener, Candice was accepted to the study. She participated in the study for one month, but after further examination, the research team let Candice know that while she met several of the study’s eligibility criterion, she didn’t meet all of them. This would prevent her from remaining a study participant. Candice was disappointed that she was unable to continue on with the study, but she says learning about her health status while being a participant was well worth the time she spent in the study.
Given the opportunity, Candice would participate in a research study all over again. “Someone has to do it,” she said simply. “I think celiac disease can be a lonely thing sometimes. Knowing that I’m doing my part to help make a difference for other people just like me feels really good.”
The National Foundation for Celiac Awareness (NFCA) shares Candice’s enthusiasm for participating in celiac disease research in its many forms. NFCA distributes information on research opportunities like clinical trials, surveys, focus groups and more through its Research Opt-In feature.
“People like Candice who participate in research are true community heroes. Without research participants, medications or therapies for any therapeutic area would not move forward and be made available to the public,” said Kristin Voorhees, MA, NFCA’s Director of Healthcare Initiatives, who is also diagnosed with celiac disease.
Kristin points out that research is proving the gluten-free diet is not enough, even for those maintaining a strict diet for several years following diagnosis. In fact, Dr. Joseph A. Murray, a celiac disease expert at the Mayo Clinic and member of NFCA’s Scientific/Medical Advisory Council, shared that recent data has shown that 70% of people living with celiac disease are still exposed to gluten, despite their best efforts to remain gluten-free. “It’s time that we move beyond simply talking about the gluten-free diet and begin to regard celiac disease for the serious genetic autoimmune condition that it is,” Kristin commented. “We as celiac disease patients have an incredible opportunity to participate in the development of treatments that could help millions of our peers – opportunities poised to change the face of celiac disease.”
Candice is just one of the many people in the celiac disease community who are willing to participate in research for the greater good of all those who are diagnosed and those who will be diagnosed in the future. “We have to come together as a community,” she said. “You never know who you might help in the long run.”
Take action today by signing up for NFCA's Research Opt-In. We'll keep you up-to-date on the many different forms of celiac disease research.
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