THE BLOG
01/11/2016 04:05 pm ET Updated Jan 11, 2017

Celiac Disease Community: Looking to Go Beyond

A dear friend of mine watches her daughter battle cancer. Each day, she fears that she will do what every parent dreads most -- bury her child. But before her daughter had cancer, she had celiac disease. Their family has plenty of access to health care and excellent doctors, but they didn't know that there's a connection between celiac disease and cancer. Maybe that's because their doctors didn't take it seriously. Could her cancer have been prevented with better knowledge of and treatment options for celiac disease? I think so. We will continue to hear stories like this until we are successful in rebranding celiac disease as the serious, genetic autoimmune disease that it is, and find better ways to deal with it.

We are living in the age of citizen science. Now, more than ever, researchers are recognizing that people living with the diseases they study are the missing link between their research and finding real solutions. It's changing the way we look at and participate in science. It's going to change celiac disease forever -- a disease that I live with. At a Research Summit hosted by my organization, I had the opportunity to witness firsthand how the puzzle pieces fall into place when a patient sits at the same table as a top researcher and talks about the real challenges they face in their everyday life.

When serving as an advocate for the celiac disease community as I do, you learn to listen. Specifically, to some of the roughly 500,000 Americans diagnosed with celiac disease out of the 3 million who are estimated to have it. Countless conversations with individuals who struggled with undiagnosed or misdiagnosed celiac disease, and my own struggle to get accurately diagnosed, have shaped my perspective of this serious, genetic autoimmune disease over the years. Together, we've helped drive down the percentage of Americans who have remained undiagnosed or misdiagnosed from 97 percent to 83 percent and have supported people in learning the ropes of the ever-challenging gluten-free diet.

As I am fond of saying: We still have work to do. Why? Because the needs of the celiac disease community have evolved along with the broader understand of celiac disease over the last 10 years. Perspectives from the patient and caregiver community, and from clinicians, researchers, government and industry, all point to the same fact: the community needs and is ready to take a giant step forward, and additional efforts are needed to ensure barriers to success are removed.

At our Research Summit, several attendees with long-diagnosed celiac disease noted that, while they thought they had a handle on managing their disease well, they realized that "coping" and "thriving" are two very different things. We with celiac disease are the picture of the empowered patient. Many in our community tell us that they don't even go to the doctor because what could the medical establishment do anyway? We deserve more. We deserve better.

That's why today, the National Foundation for Celiac Awareness (NFCA) is becoming Beyond Celiac. This name change is a reflection of the spirit of the community, the evolution of their needs, and current research and clinical environments that are driving progress toward the development of breakthrough therapies. In fact, I'm confident that, by forging the right connections between patients and researchers, we can make progress toward finding a cure by 2025.

NFCA was founded in 2003 with a specific focus on increasing awareness of celiac disease so that more people could be diagnosed before they suffered serious health consequences from their untreated disease. Early and accurate diagnosis, and making sure celiac disease is treated as seriously as the impact it has on those with the condition, are still pressing challenges that need we need to address. But today, I know the needs of the community have only increased as awareness has broadened. As I am out listening, I hear about the daily struggles the celiac disease community faces even with accurate diagnosis, adherence to a strict gluten-free diet and good medical care. By sharing and comparing stories, the community speaks clearly that it wants and needs more.

Research conducted by Beyond Celiac shows five critical areas of need: continued efforts to increase accurate diagnosis, advocacy and community building for collaborative research toward a cure, better understanding of the seriousness of celiac disease and the potential for understanding other autoimmune diseases, access to and confidence in safe food and medicines, and availability of trusted information.

Beyond Celiac is committed to creating connections that are necessary not only for conducting important research, but also for continuing to drive down the rate of those undiagnosed or misdiagnosed and ensuring that the community has access to the resources that enable them to manage celiac disease.

We'll continue to support programs like Seriously, Celiac Disease, the Talk. Tell. Test. campaign, GREAT Kitchens (our online gluten-free food training program) and our collaborative research initiatives. These efforts will be complemented by our expanded focus to spur the development of better, additional treatment options -- and ultimately a cure -- for celiac disease.

I've written at length about the real, tragic toll that an undiagnosed or misdiagnosed case of celiac disease can have on people and their loved ones. Now we need to go beyond and do even better to ensure that everyone with celiac disease can live life to the fullest, free from any disease-related impact. For 13 years, I've been fighting alongside many others to raise awareness of celiac disease and empower the undiagnosed to reclaim their lives and health. I'm heartened by the progress that we've made and excited as we move beyond celiac together.