NFCA President & CEO Alice Bast talks about using stress to create change for people living with celiac disease.
The following post from National Foundation for Celiac Awareness (NFCA) President and CEO Alice Bast originally appeared in the Huffington Post. View the original article here.
We all know about stress. If we have a pulse, we have it. Scientific research supports the theory that it shortens our lives: “Chronic psychological stress appears to accelerate biological aging.” As a person dedicated to leading a healthy, active life, this worries me. Why? Because I live with celiac disease and there is a bit of stress whenever I need to think about my treatment. Daily. Several times each day, in fact.
Celiac disease is a serious, genetic autoimmune condition that is triggered by gluten, the protein in wheat, rye and barley. When your disease is managed by excluding these grains from your diet completely, you’re bound to get a little stressed out about what you’re eating. These grains, especially wheat, are in just about everything, from soy sauce to lip gloss. When just a crumb is enough for your body to launch a violent attack against itself, you’ll stress even more about the collateral damage.
Walk in the shoes of a person with celiac disease for a day. Picture waking up, mapping your day based on where, when and what you’ll eat. It doesn’t sound that hard, right?
Now, imagine you can’t eat 75 percent of the food that are currently in your diet. Things just got a little harder. There’s no spontaneous stop at Dunkin’ Donuts for breakfast or picking up a slice of pizza for lunch. You have to ask a million questions about ingredients and food preparation before you can even consider navigating the food at the company party, the family get-together or other special event. You’ve been designated as the picky eater — that person — who is obsessed with food. You’re now frustrated, overwhelmed and constantly on high alert, worried that anything you put in your mouth could make you sick at any time.
Sure, you get good at managing the gluten-free diet over time. You may even take a chance once in a while and eat something that you think is probably safe — gluten roulette. Even if you believe you are being excessively careful, things will go wrong at some point and you will get glutened. Maybe you are thrown out of commission for a whole day or more, or find yourself needing to leave the show for fear of vomiting. Maybe you’ll have to use yet another sick day or miss out on time with the kids because you’re barely able to stand upright. Or worse – your doctor diagnoses you with thyroid disease or lymphoma and you have a sneaking suspicion that ongoing celiac disease-related inflammation opened that door.
Stressful? You bet it is.
The National Foundation for Celiac Awareness (NFCA), a national non-profit dedicated to serving the celiac disease community, recently hosted its 2015 Research Summit, which brought patients, industry and research leaders together in one room to identify the unmet needs of people living with celiac disease and map out a plan to fill the gaps.
At the Summit, a number of people with celiac disease who have been diagnosed for years admitted that they had suppressed their conscious awareness of the burden of living with the disease. When given a forum to share their stories with researchers, officials from the National Institutes of Health (NIH), and clinicians, they realized that there was more pressure under their lids than they had previously let themselves recognize.
We are resilient, but it doesn’t mean that the stress isn’t real and taking a toll on our well-being and long-term health outcomes. Daniel A. Leffler, MD, MS, Director of Research at the Celiac Center of Beth Israel Deaconess Medical Center (BIDMC) and NFCA Scientific/Medical Advisory Council member agrees. At the Summit he noted, “Celiac disease can be a life-saving diagnosis, but it also comes with a great deal of responsibility, effort and burden.” Much of which, he says, which is largely unrecognized by the medical community.
Researchers and clinicians that attended the Summit are very optimistic about the future and some even speculated that within just a decade, we could have a cure for celiac disease. Equally exciting is the possibility that curing celiac disease could lead to a far better understanding of other autoimmune diseases (multiple sclerosis and type 1 diabetes to name a few). Since celiac disease is the only autoimmune disease with a known trigger (gluten), it could serve as the gateway to potentially unlocking all of autoimmunity.
We’re on the brink of having a pharmaceutical treatment for celiac disease. As a society, we live in a time where science is recognizing the need for and value of patient involvement in the research process. Now, patients must recognize the connection between science and our everyday lives. Once science helps us better manage celiac disease, we can take our lives back. Imagine being able to use the results of research to break down the barriers we face; what if we could send our kids on a school field trip and not worry about cross-contact? What if we could go to a social function without grilling the cook on preparation practices? Imagine if we could prevent the cascade of autoimmune diseases that can come along with undiagnosed celiac disease. Even smaller details solved by research can make our lives easier. Recently, I had a routine medical procedure and was offered crackers when I woke up from the anesthesia. Imagine being able to focus on one medical need at a time and not worry that you could accidentally be glutened in a place where you are supposed to feel safe.
Let’s go back to stress for just a moment. In a TedTalk that’s been viewed nearly 9 million times, expert psychologist Kelly McGonigal says, “The harmful effects of stress on health are not inevitable. How you think and how you act can transform your experience of stress. When you choose to view your stress response as helpful, you create the biology of courage. And when you choose to connect with others under stress, you can create resilience.”
Research has shown that changing the way we view stress can change the way it impacts our bodies. What if we could channel the stress of living with a chronic illness and instead use it to drive change? We can frame the stress as a challenge and not a threat. This is our ticket to empowerment. This is our window of opportunity to give voice to the challenges we face and demand research that will ultimately help us live better and longer.
The quickest way for people living with celiac disease to start having an impact on research is to join Beyond Celiac:™ NFCA’s Research Opt-In. Those who do will receive period email updates with information on the latest in research and opportunities to get involved.
Use your imagination just one more time: Think about the impact that our collective input can have on research. Those of us with celiac disease are in the fight together. We can unify our voices to amplify celiac disease, be heard, and help build the pathway to a cure.