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What You Can Do to Improve Life with Celiac Disease
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.
To our GREAT health,
By Chef Oonagh Williams
As many of you know, I constantly shop in Costco. One summer on separate occasions they had two versions of this salad. The ‘bought in’ salad was made with canned chicken breast and then Costco made their own version using left over barbecued chicken. One was called Cape Cod Chicken Salad and the other had to be renamed to New England Chicken Salad. I read the label (as I often do both for nutrition and recipe ideas) of the ‘bought in’ salad and it included Craisins, pecans and honey with mayonnaise. I went back to my Chicken Waldorf Salad and took that as the base for this salad.
About Chef Oonagh Williams
Chef Oonagh will be speaking at the GFAF Expo in Worcester, Massachusetts on Saturday, July 25 on “how to cook so they will eat,” using her extensive food knowledge to help you cook more meals that your family will eat, without strange, expensive or hard-to-find ingredients. Chef Oonagh has a Culinary Arts degree and prior to the gluten-free diet and her son’s diagnosis with celiac disease, she always cooked from scratch with real ingredients. “Like” Chef Oonagh on Facebook at Gluten Free Cooking with Oonagh. Connect, watch and learn from Chef Oonagh’s gluten-free cooking classes on Curious.com.
Email: [email protected].
By Lisa Fitterman
She looked down at her stomach in shock and disbelief. While April Marlow-Ravelli was one month pregnant, her belly was suddenly protruding as if she was six months along. Round and hard, her stomach was also in so much pain that she was having trouble breathing.
With this gut-wrenching discomfort, she knew exactly what had happened. “I’ve been glutened!” Marlow-Ravelli thought.
Over the last few months, the NFCA has been focused on raising awareness of the importance of celiac disease screening for genetically at-risk family members. We launched our Seriously, Celiac Disease campaign on April 20, 2015, and have since had the opportunity to show our community members how to have an effective conversation with their family members about getting screened. We’ve released a national video PSA, helpful discussion guides, a webinar and a podcast, and held many social media events to help you feel educated and empowered to have these important conversations.
Throughout the Seriously, Celiac Disease campaign, one thing has been clear – from having an effective conversation with your at-risk family members to asking your doctor to test for celiac disease, it all comes down to the basics of communication. What does this mean? We need to find the balance of being informative and caring, while staying mindful of people’s emotions, concerns and questions about celiac disease and their genetic risk.
By Valerie Stearns, NFCA Communications Intern
NFCA recently released a two-part podcast series featuring Anne Lee, EdD, RDN, LD, Professionals Manager at Dr. Schar USA, Inc., who shares her tips for people going through the celiac disease testing and diagnosis process. Unfortunately, many doctors shy away from testing for the genetic autoimmune disease because of the misconceptions that the gluten-free diet is a “fad” and that celiac disease is a rare childhood illness. Her advice is aimed at making patients more educated about celiac disease so that doctors can provide them with the best quality healthcare.
In the podcast, Anne advises patients who are considering getting tested for celiac disease to bring documentation and facts from a reputable resource, like NFCA, in order to prevent doctor pushback. She also suggests that someone who has a family member with celiac disease should emphasize to the doctor that it is a genetically linked autoimmune disease. In addition, she believes that it is important to have a primary care physician who listens and respects you for the sake of your overall health, so if this is not the case, it may be time to make a change.
Get even more practical tips from Anne by listening to the full-length podcasts at www.beyondceliac.org/FamilyTesting.
Introducing NFCA’s newest education initiative: Food Safety Friday. Navigating the grocery store and understanding food and warning labels can be challenging for gluten-free diet newbies and pros alike. NFCA will share quick facts each week to help you gain confidence and know that you’re safely managing celiac disease through the gluten-free diet.
Join NFCA and Lucy’s in a game of Caption This! NFCA will be sharing photos and .GIFs on social media. We’ll ask you to share your best caption for the photo/video in the comment thread of the post. If we like your caption the best, you’ll win a gluten-free prize pack from our friends at Lucy’s.
View the captions that already won: