Monthly eNewsletter

Monthly eNewsletter

Alice BastNote from Alice

What You Can Do to Improve Life with Celiac Disease

NFCA President

When I finally received my diagnosis, I felt like the only person in the world with celiac disease. When I talked about my gluten-free needs, it was like I was speaking a different language. I was overjoyed that I found the answer to my ailments, but I still felt isolated and alone.

Fast forward to today, over 20 years later. I am returning from the 16th International Celiac Disease Symposium (ICDS) in Prague, where I had the pleasure of meeting celiac disease support and advocacy groups from around the world. It’s amazing to see how barriers are broken in other countries and how despite living on different parts of the globe, we face many of the same challenges and carry the same fears.

Together with my fellow celiac disease advocates and National Foundation for Celiac Awareness (NFCA) Director of Healthcare Initiatives, Kristin Voorhees, MA, I attended various sessions and discussions from two tracks: one geared for people living with celiac disease and one for the researchers trying to make life better and easier for us. Needless to say, people with celiac disease are no longer alone in facing everyday challenges.

Since my diagnosis, I’ve watched the world of celiac disease morph and change. Gone are the days of ordering gluten-free food from Canada that tasted like the box it came in (there was no distribution in the US). Gluten-free food is more widely available, cheaper and tastier than ever before. And while I’m grateful for all the progress we’ve made, we are still not where we need to be. Food safety, especially in restaurants, is a concern. Our kids can’t always eat at school. Many of us live with ongoing, unexplained symptoms. We’re often left wondering, what happened, why am I sick? Whenever I’m glutened, the anger and pain from symptoms is always followed by the fear of long-term health consequences. How much damage did it do? How long until I heal? Will this damage eventually lead to cancer?

ICDS was packed with experts from around the world who are searching for the answers to our questions about celiac disease. Each time I come back from ICDS, I am blown away by the amount of research efforts happening for our community. In recent years, a shift has happened: patients are no longer bystanders in research, but active and much-needed participants. In short, we are at the center of celiac disease research.

Research can seem scary to some, but I’m fascinated by the process and I feel a sense of accomplishment from being part of the solution for my disease. I’m playing an active role in moving celiac disease research forward. It’s almost as if I have been given the opportunity to help control the uncontrollable; instead of waiting for solutions to our problems, I’m tackling them head-on alongside the brightest minds of the field. You can too. Our voices need to be heard.

Do you want a cure for celiac disease? Do you want our scientists to prevent celiac disease? Do you want to better understand unanswered questions? The first step in getting answers and getting involved in research is to become aware of the opportunities that are out there. Sign up for Beyond Celiac:™ NFCA’s Research Opt-In to stay up-to-date on research. You’re not obligated to participate in research by participating in the Opt-In. You’re only signing up to be informed.

FasterCures,an organization focused solely on removing barriers to meaningful medical progress, recently released this amazing video describing the role of the patient in research, how it evolved and where it is today. I hope that you will watch this video and learn how you hold the key to achieving a better life with celiac disease through research.