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Note from Alice
Cooking with Oonagh
HEALTH & WELLNESS
Bill on Gluten in Medications Reintroduced in Congress
Is a Cure on the Horizon?
Follow-Up Care & Testing
Anemia & Doctor Pushback
FDA gluten-free labeling rule
Share your celiac disease experience!
Renovate Your Gluten-Free Diet
New web section!
NEWS & UPDATES
In the Headlines & On the Shelves
Web & Social Media Manager
CHAT WITH NFCA:
NFCA President & CEO
Celebrating the “Firsts”
October is always an exciting time for the National Foundation for Celiac Awareness (NFCA). For us, October marks the end of our fiscal year. We always celebrate in the same way – with a big party and lots of unbelievably tasty gluten-free food.
October 2015 is no different. This year, we’ll be celebrating through our Second Annual Samuel Gee Society Reception, a party for those who have donated $1,000 or more to NFCA. We’re recognizing those who have contributed to the major milestones of both NFCA and the field of celiac disease. We are pleased to announce our honorees:
Glenna Crooks, PhD, Founder of SageMyLife, LLC
Glenna is a near and dear friend to NFCA. You may recognize her name – she was the author of the viral article, “Simple Slice of Bread. Staff of Life for You. Poison for me.” Glenna played a key role in the first Research Summit hosted by NFCA. She helped us both plan the Summit and was our lead facilitator for this novel interdisciplinary Research Summit. Glenna is fantastic friend and wonderful mentor. Learn more about Glenna here.
Francisco Leon, MD, PhD, CEO and Chief Medical Officer of Celimmune
Dr. Leon is a champion for the celiac disease community; he is truly a researcher seeking to make significant changes for those of us living with the serious genetic autoimmune disease so we can live better, longer. He was the first researcher to advocate on behalf of the celiac disease community within the pharmaceutical industry. Throughout his career, he has worked to get the pharmaceutical industry to recognize the need for celiac disease treatments outside of the gluten-free diet alone. Currently, Dr. Leon serves as the CEO and Chief Medical Officer of Celimmune and develops celiac disease diagnostics and has contributed to the development of the first tool to be used to monitor gluten-free diet adherence. Learn more about Dr. Leon here.
Allison Lubert, Owner of Sweet Freedom Bakery
Thanks to Allison, people living with celiac disease in the Philadelphia area do not have to go without delicious baked goods. Allison was the first to open a gluten-free and allergen-free bakery in the Philadelphia area. Luckily for the NFCA team, we are within a short drive of the bakery and often enjoy Allison’s delicious baked goods for office parties and events. Learn more about Allison here.
Chef Jehangir Mehta, Next Iron Chef Finalist and owner of the New York City restaurants Graffiti and Mehtaphor
Jehangir is our number one chef advocate. I had the pleasure of traveling around the US with Chef Mehta during NFCA’s Gluten-Free Chef’s Table Tour, a traveling event that stopped at restaurants around the country who are doing gluten-free the right way. Chef Mehta is the first NFCA Chef Ambassador and he works to ensure anyone with celiac disease or food allergies can enjoy safe meals in his restaurants. Learn more about Chef Mehta here.
Dick Moberg, CEO of Moberg ICU Solutions
Last, but certainly not least, is Dick Moberg. Dick Moberg helped launch NFCA. He has two firsts to his credit. He and his team were my collaborators in our first ever National Institutes of Health (NIH) Grant. He also provided NFCA’s first office space. Learn more about Dick Moberg here.
I’d also like to thank all of you for being right there with us throughout the years. NFCA has been the first to accomplish many things with you at our side. In 2015 alone, we launched the first national family screening campaign, Seriously, Celiac Disease and hosted the first-ever Research Summit within the celiac disease field that was hosted by a celiac disease group. The Summit was also the first to bring patients, the biopharmaceutical and diagnostics industries, government stakeholders and advocates and innovators from various healthcare fields together in one room with one goal in mind: Making life better for you.
These are not the only firsts that NFCA can claim. And, they certainly won’t be the last. With your support, I know that all of these firsts will lead to the end of celiac disease. Please consider making a tax deductible donation to NFCA today. With your help, we will forge the pathways to a cure.
To putting our health first,
National Foundation for Celiac Awareness (NFCA)
President and CEO
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RATATOUILLE OR VEGETABLE CASSOULET QUINOA HERB CRUST
Cassoulet was originally a French peasant dish made with a variety of game meats and beans, all cooked together with a breadcrumb crust. I don’t think anyone nowadays could afford to make it with the variety of meats required unless they were hunters. It can be made with sausage and meat. This version is made with a mix of vegetables similar to a ratatouille, cooked beans added and finished with a cooked quinoa crust mixed with olive oil and fresh herbs.
GLUTEN-FREE APPLE PANCAKES
These are not the regular American-style pancakes. Far softer and moister. I have used my own flour blend, chick pea flour, King Arthur Flour gluten-free blend, Pamela's Pancake and Baking Mix, Pamela's Artisan and Trader Joe's Gluten-Free Pumpkin Pancake Mix (and Trader Joe's confirmed to me in September 2015 that they will be carrying the Gluten-Free Pumpkin Pancake Mix again this fall.) So, any flour would probably work.
Gluten-free Chef Oonagh Williams has a Culinary Arts degree and always cooked real food even before diagnosis of celiac disease. Watch Chef Oonagh on New Hampshire's ABC WMUR's Cooks Corner on Monday, October 5, 2015. Consult with Chef Oonagh on how to cook gluten-free, for other special diets, cooking classes, corporate Lunch 'n' Learns and cooking demos on healthier cooking. 'Like' Chef Oonagh at Gluten Free Cooking with Oonagh on Facebook.
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Along with other celiac disease organizations, the National Foundation for Celiac Awareness (NFCA) has long called for gluten to be called out on medication labels or, preferably, completely removed from medications.
In 2013, Ohio Representative Tim Ryan introduced the 2013 Gluten in Medicine Disclosure Act, which would mandate that gluten be disclosed as an ingredient on all medication labels. Congressman Ryan and New York Congresswoman Nita Lowey have reintroduced the bill in the 114th Congress as the Gluten in Medicine Disclosure Act of 2015. The legislation contains the same language as the bill introduced to the 113th Congress. NFCA will continue to support this important bill.
Alice Bast, President and CEO of NFCA applauds the legislation. "From our own FDA-funded research, we know that our celiac disease community is deeply troubled by not having any clear guidance or reassurance that their medications for other ailments don't in fact, contain gluten. There is a strong fear that a medication that should be treating one condition is actually making them sick and putting them at risk for long term health consequences due to gluten exposure."
For more information, read these Q&As from 2013 with Congressman Ryan and Congresswoman Lowey.
NFCA will keep you updated on any news surrounding this bill. To learn more about gluten in medications and NFCA's involvement, visit www.CeliacCentral.org/GlutenInMeds.
By Claire Baker, NFCA Director of Communications & New Media
A cure? What?
Five years ago, four years before I came to work at the National Foundation for Celiac Awareness (NFCA), I was diagnosed with celiac disease. I had been severely and chronically anemic for the better part of 25 years, which didn’t seem to alarm my doctors much, so I just learned to live with it. Then I got a new (awesome) doctor who conveyed how serious anemia could be, especially long-term. Long story short, it was a hematologist (also awesome) who finally put the pieces together. Blood tests and biopsy confirmed what had never even occurred to my other health practitioners -- celiac disease.
And then, like most of the diagnosed population, I was pretty much left to figure out the treatment on my own. And, as we all know, the only treatment is a strict gluten-free diet. And, like many of us, I take my skills at navigating my treatment as a source of pride. My health is very important to me. And five years ago, I did not see a lot of talk about alternate treatments or cures, just a “stick to the diet. It’s the only thing you can do” discourse.
Then, just over a year ago, I was fortunate enough to join the NFCA team. As you can imagine, I am steeped in news about celiac disease all day, every day. I’ve learned that 70% of those of us who think we are very strict with our diet are still having symptoms. This doesn’t even take into account the people who knowingly cheat on occasion -- that one slice of pizza with the guys watching the game, or that once-a-year slab of birthday cake. YOLO, right? These are real people -- some of whom I’m related to. I want my loved ones to be around for a long time, too!
And then I started hearing talk about alternate treatments. At first I was resistant -- I do not take many medications and didn’t want to have to start now. But then I started noticing that I do take tylenol for a headache. And I will give my kids cold medicine. And then I thought, wouldn’t it be great if I could do something before I dine out so that I can eat gluten-free at a restaurant without fear of cross-contact? I know a lot of people who would love that.
And since diagnosis, I’ve wondered why the gold standard is a slightly invasive, scary-sounding procedure devised 60 years ago that makes doctors and patients reluctant to even consider exploring the possibility of celiac disease. I read earlier this week that a new diagnostic test is being developed in Norway. Wouldn’t it be wonderful to screen for celiac disease through a blood test alone? Since 83% of people with celiac disease are running around undiagnosed or misdiagnosed, can you imagine how that might increase testing? And if the diagnosis process is easier and there’s a treatment that’s not as burdensome as “never-eat-gluten-again-on-purpose-or-accidentally-for-the-rest-of-your-life,” many more of us can get the opportunity to actually get better, stay better, and live the long life we imagine for ourselves and our loved ones.
But a cure? Smart people in the field, including Dr. Frank Hamilton of the National Institutes of Health, think it’s possible. And not even that far away. At NFCA’s 2015 Research Summit, multiple leaders in the healthcare industry say they expect there to be a cure within the next 10 years. A cure! See for yourself:
This is why I’m so proud of the work that NFCA is doing. We are making sure that the voice of people with celiac disease is front and center in the conversation surrounding research. We know our stories. We know the challenges. We need to be the ones telling researchers.
Just last week, NFCA was offered a $10,000 grant challenge - an anonymous donor has agreed to match all donations between now and October 15, 2015. Each dollar will be matched and each dollar from someone who has never donated to NFCA before will be matched $2 for every $1 donated. This is an amazing opportunity to help NFCA forge the pathways to a cure. We are nearing our $10,000 goal, but need your help to get there! Learn more about the grant challenge and see how to donate to NFCA's important work here.
We’ve got to keep the pressure on to keep up the momentum. It’s very real. The time is now. We are in this together. And we have a bright future on the horizon. Please help us make it happen. For all of us.
Celiac disease tends to be a self-managed condition because it is treated solely through the gluten-free diet. While going gluten-free can clear up symptoms, it’s important that you continue to monitor your health and healing with the help of your gastroenterologist or primary care physician.
You can take your health in your own hands and be proactive about requesting follow-up tests, especially if your doctor has not recommended any additional care. Don’t worry - NFCA is here to help! Visit the link below to learn more about the ongoing testing you need.
Did you know NFCA is now doing podcasts? We’ve been working with experts in the field to get you information on the topics that are important to you. See what we’ve covered so far!
We want to hear from you!
Please take one minute to tell us what you think of our podcasts and to let us know which topic you’d like us to tackle next. Share your opinion here.
As of August 5, 2014, all manufacturers that fall under the jurisdiction of the US Food and Drug Administration (FDA) must abide by the guidelines put in place, which define what the term “gluten-free” means on packaged goods. Prior to this ruling, gluten-free food was not regulated. With the ruling in place, manufacturers labeling their products gluten-free have a definition to follow, making it easier for people with celiac disease to know what’s safe and what’s not.
The gluten-free labeling rule can be overwhelming. To help you understand what you need to know about labeling, NFCA created a hub for all information related to the ruling.
You are at the center of everything we do at NFCA. Our goal is to make sure that you live better, longer, in spite of celiac disease. Throughout October – now officially ASKtober – we want to hear about your biggest concerns, opinions and questions. We’ll launch a series of polls so you can voice your opinions and understand what your fellow community members think about the issues. After the campaign, we’ll share the interesting facts that we find.
By Pauline Comeau
You have celiac disease and, yes, that diagnosis comes with what may seem like an endless list of foods and drinks to avoid so your small intestine can repair and any gastrointestinal and other symptoms will disappear. And, yes, it’s also true that many gluten-free foods are not as nutritious as their enriched gluten-based counterparts. Oh, and let’s not forget that gluten-free foods are often pricier than their gluten-containing equivalents.
But wait, because here’s the good news. When Allergic Living set out in search of powerhouse gluten-free diet options that can and should be eaten for optimum health, the door flew open to a vast and wonderful range of delicious, affordable choices. The experts say that incorporating these foods into a daily diet doesn’t mean endless hours in the kitchen, or forking out huge sums on specialty products. All that’s needed is an open mind and some simple strategies.
Photo credit: Masterfile & Allergic Living
Calling all bakers! NFCA just launched a new baking section on CeliacCentral.org, designed to get you the information you need to make gluten-free baked goods that are just as delicious as their gluten-containing counterparts. In this baking hub you’ll find:
NFCA thanks our Baking Section sponsors!
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Everyone has a large and complex personal network that plays 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.
Join the National Foundation for Celiac Awareness for a special webinar to talk about the critical role patients play in research. You will hear from three key leaders who are working to change the face of celiac disease:
Drs. Hughey, Leon and Murray will share examples of how patients have contributed to successful celiac disease research in the past and discuss how a motivated and educated patient community can continue to help advance the field. Tune in to learn how patients, researchers and NFCA can work together to make a change.
Tell us about your gluten-free product finds on Facebook every Sunday night at 7:45 p.m. EDT!
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