Celiac research driven by people with the disease will chart the way forward.
When it comes to research to help patients living with diseases like celiac, there are two key elements: asking the right questions and asking questions of the right people. At Beyond Celiac, we learned this firsthand when we were looking at why many family members are hesitant to get tested for celiac.
Through listening to what people were saying on social media like Facebook and collaborating with the Celiac Center at Boston’s Beth Israel Deaconess Medical Center on focus groups, interviews and a survey, we learned that relatives actually do want to get tested.
But it turns out that we didn’t uncover all of the important facts. Additional research that included both diagnosed patients and untested relatives showed they don’t, however, want the diagnosed to simply share a Facebook status and tag their relatives, for example. They want a one-on-one, personal conversation that focuses on real life examples and information.
Once we took family dynamics and real-world scenarios into account, we were able to develop the right resources, like a video modeling an effective conversation and a Do’s and Don’ts guide, to address the challenges.
That’s a big learning lesson for the community and researchers studying the disease. Things that might seem so apparent to one person might not be obvious to others, which is why celiac disease patients are critical to moving research on the condition forward.
Whether you want to commit to a clinical trial or just answer a few online questions, every person living with the condition can play a role in advancing the field. Here are ideas on how you can get involved in research in ways that feel comfortable for you.
If people with celiac disease hadn’t been vocal about their continued struggle to get family members tested, we wouldn’t have known that we needed to probe further into the issue. But people didn’t do anything out of the ordinary to let us know: they simply talked to us on social media by posting their thoughts and experiences with family member testing.
Keep an eye out for opportunities, such as commenting on Facebook posts or filling out a survey, to voice your thoughts and experiences. We use your comments to help guide our work and we also relay the information we get from you to researchers who have the power to make change.
Participate in Celiac Research
Some people are hesitant to participate in celiac disease research for a variety of reasons – they might believe the gluten-free diet is enough of a treatment and no more information is needed, or they might simply not understand the goal of the study. But without patient participation, researchers cannot move forward on a variety of research projects.
Rest assured, not all celiac disease studies involve taking an experimental drug. For example, you may be asked to give blood for researchers to examine or to keep a log of food you eat. By signing up for the Research Opt-In on our website, you can stay up to date on current research studies.
Share Your Health History
Yes, health history is personal, but it’s also critical for investigators to know. There are many things about celiac disease we don’t understand, like why some people with the celiac disease genes (HLA-DQ2 and HLA-DQ8) develop it while others don’t. Right now, there’s little to no information on the natural course of celiac disease. Keep an eye out for upcoming opportunities at Beyond Celiac to contribute to research in a very direct way.
Stay in the Know
The more educated you are on what’s happening in the celiac research field, the easier it is to recognize the importance of emerging research and your role in moving it forward. For example, a recent study on gluten exposure in people with celiac disease found that 66 percent of people in the study reported suspicions that they had been exposed to gluten during their participation. Even more alarming, 63 percent didn’t know they ate gluten until the symptoms started.
Sound familiar? I know that I’ve been unaware of exposure at times until the tingling and burning in my skin began, and I look forward to practical outcomes that might result from research studies like this one.
This idea of patient-powered research is a new and exciting concept; we’re being given the opportunity to sit in the driver’s seat and steer the direction of our future. As a community that has generally struggled to get diagnosed and be taken seriously, this is a major step forward in changing life with celiac disease as we know it.
Alice Bast is CEO of Beyond Celiac, the national organization working on behalf of the celiac patient community. Visit BeyondCeliac.org to learn more.