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Stress and the Celiac: How to Fuel Research and Solve Challenges
NFCA President & CEO
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. As someone living with celiac disease, you can understand the stress that comes with thinking about our treatment day in and day out.
Sure, we get good at managing the gluten-free diet over time. But that doesn't mean the treatment of celiac disease comes without stress.
The National Foundation for Celiac Awareness (NFCA) 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 those of you 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 periodic email updates with information on the latest in research and opportunities to get involved.
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.
To our GREAT health,
National Foundation for Celiac Awareness
President & CEO
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By Chef Oonagh Williams
HOMEMADE NUT BUTTER
With peanut allergies on the rise, there is now a variety of other nut butters available, but some are quite expensive. I was inspired to create this recipe once I was told to stop eating peanuts for health reasons.
HOMEMADE CHOCOLATE NUT BUTTER
There must be very few people who haven't tried Nutella. It is delicious yes, but healthy, no. This homemade version is both tasty and healthier.
BLUEBERRY NUT LEMON CRUMB CAKES
This is a variation of my Blueberry Lemon Crumb Cake that was based on a wheat flour recipe from our local farm stand.
About Chef Oonagh Williams
Chef Oonagh has a Culinary Arts degree and, prior to going on a gluten-free diet and celiac disease diagnosis, always cooked from scratch with real ingredients. 'Like' Chef Oonagh on Facebook at Gluten Free Cooking with Oonagh. Connect with Chef Oonagh on Skype for coaching in how to cook for a gluten-free diet. Chef Oonagh regularly appears as the featured Chef on NH's ABC WMUR TV, speaks at conferences, corporate health fairs and lunch 'n' learns.
Do you know that you have the power to change the way we live with celiac disease?
It’s true – people living with celiac disease (or any other condition) are living in a unique time period for research. Things are changing. Scientists aren’t the only ones driving research. Patients are, too.
This past April, NFCA hosted its 2015 Research Summit to connect doctors, other healthcare providers, scientists and people affected by celiac disease as a first step towards establishing a patient-centered research agenda for the celiac disease field.
Without input and participation from people living with celiac disease, researchers can’t make progress towards finding solutions to the challenges we live with day in and day out. NFCA is here to amplify your voice and help you connect with researchers to make a change.
Learn how by watching our newest video. Then, sign up for Beyond Celiac:™ NFCA's Research Opt-In so you can stay up-to-date on the latest in celiac disease research and opportunities to get involved and make a difference.
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By Jason Rehel
Could antibodies found in chicken eggs hold promise for treating celiac disease? University of Alberta researcher Hoon Sunwoo thinks so.
Sunwoo says a new supplement that he and a colleague are developing holds out hope for treating the symptoms of celiac disease via antibodies in egg yolks that bind with gluten “to neutralize it.”
While a trial has yet to prove the pill’s effectiveness, the university suggests its aim is to allow at least some gluten in celiac patients’ diets.
Important note: While there are several pharmaceutical treatments in development and being evaluated through clinical trials, there is no pharmaceutical treatment available for celiac disease at this time. Currently, the only treatment for celiac disease is a strict, lifelong gluten-free diet. NFCA encourages you to stay informed about celiac disease research and drug development. Visit www.beyondceliac.org/drugdevelopment or sign up for Beyond Celiac:™ NFCA's Research Opt-In to learn more and stay connected.
Photo Credit: Allergic Living
With so much information floating around on the internet, it’s important to find factual information from a trusted source. To help, NFCA is hosting a game of Fact vs. Fiction. Each week in September, we’ll unveil a mini-quiz so you can test your celiac disease and gluten-free knowledge.
Every time you take the quiz and enter your email address, you’ll automatically be entered to win a gluten-free prize pack from our sponsor, Mission. We’ll randomly select 15 winners at the end of the month. Good luck!
NFCA thanks Mission for sponsoring this campaign!
By Anne Lee, EdD, RDN, LD, Professionals Manager of Dr. Schar USA
The slight brisk feel to the early morning air ushers in the month of September. Whether your child is in preschool or college, the month of September means it is back-to-school time. From novice to veteran, starting a new school year brings with it a certain amount of trepidation. Starting the school year gluten-free can present its own unique challenges. However, with careful planning, getting the right information to key people will make the process as easy as any first day of school.
No matter what grade level your child is entering, two key elements to a successful school year are a positive attitude and lots of planning.
Scheduling meetings before school starts with the classroom teachers, school nurse, and cafeteria workers is vital.
Continue reading for more information and tips for getting accommodations for your gluten-free child.
May is Celiac Awareness Month, but each September, we get another chance to raise awareness about this serious genetic autoimmune disease. That day is September 13: Celiac Awareness Day.
Each year, the NFCA makes more and more progress in raising awareness and advocating for your needs - and we couldn't do it without you! We are honored to work with you to reach our mission of forging pathways to a cure and helping people with celiac disease live better, longer.
We’ve come a long way over the years, but we still need to raise even more awareness of celiac disease, not just the gluten-free diet. We're working hard to make sure that celiac disease is recognized as the serious genetic autoimmune disease that it is. Even if you are short on time, we have ideas that will have a big impact if we all work together.
Going out to eat at restaurants can be intimidating to people who need to follow a strict gluten-free diet for medical reasons. Whether you have celiac disease or non-celiac gluten sensitivity (‘gluten sensitivity’), NFCA wants to help you have a more positive, less stressful dining experience.
With our new and improved Dining Tips sheet, you can learn how to be proactive and ask the right questions of restaurant staff members. This free resource incorporates feedback from our Patient Advisory Council to help you effectively communicate your gluten-free needs and feel more comfortable while eating away from home.
Not only are nuts and seeds gluten-free, but they also have plenty of health benefits. Check out this infographic with nutritional facts on these naturally gluten-free snacks!
Sponsored by Blue Diamond
Don’t miss the 4th Annual Gluten-Free Awareness Carnival at the University of Pittsburgh! Hosted by the campus’ Gluten-Free Awareness League, this event offers free food, raffle prizes, speakers, game and more!
Visit NFCA’s Upcoming Events section to learn more.
Everyone has large and complex networks that play a role in our health, happiness, success and satisfaction in life. A person's network can be significantly impacted by a life-changing event, including the diagnosis of a chronic condition like celiac disease.
Celiac disease affects more than just the food we eat - it presents a unique set of challenges within our networks at home, work, socially and beyond. Through the exploration and understanding of our own networks, we can learn what steps to take in order to better manage celiac disease and live gluten-free.
Join NFCA as Glenna Crooks, PhD, founder of SageMyLife, takes you through one individual's journey before and after a celiac disease diagnosis and dives into the many ways that a celiac disease diagnosis can impact the relationships with those around us.