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Note from Alice
Cooking with Oonagh
HEALTH & WELLNESS
Top Research News of 2013
The Power of the Patient
By NFCA's Kristin Voorhees
Top Webinars of 2013
Top New Resources of 2013
Top News Stories of 2013
Top Recipes of 2013
Gluten-Free Holiday Cooking
Allergic Living Sneak Peek
Gluten-free gingerbread house recipe
NEWS & UPDATES
Celiac in the News
CHAT WITH NFCA:
NFCA Founder & President
Highlights from 2013
At the end of every year, I find myself thinking of all the progress we have made as the gluten-free community. I never cease to be amazed by how much of a difference we can make together! While there were many events and milestones reached this year, there are a few that stand out as the biggest victories for me as a person living with celiac disease and as the President of the National Foundation for Celiac Awareness (NFCA).
NFCA Celebrates 10 Years of Restoring Health and Reclaiming Lives
Words truly cannot describe the excitement and immense pride I felt as NFCA celebrated its tenth anniversary. In just 10 years, NFCA has succeeded in increasing celiac disease diagnoses and improving the quality of life of those on a lifelong gluten-free diet. While there is still much work to be done to ensure people living with celiac disease and gluten sensitivity can eat without fear, we have made immense progress together. We’ve gone from special ordering gluten-free food from outside the U.S. to having an official ruling from the FDA on gluten-free labeling and more gluten-free options than we can count. There even are potential pharmaceutical treatments on the horizon.
FDA Rules on Gluten-Free Labeling
In August 2013, the U.S. Food and Drug Administration (FDA) officially ruled on gluten-free labeling, standardizing a definition for “gluten-free” on food packages. This was a huge victory for the celiac disease community. Not only was celiac disease and the gluten-free diet the center of attention in major news outlets, but it proved to the general public just how vital this lifestyle is to our health. While the rule was met with mixed emotions from the community, one thing is for sure: The gluten-free community came together to push for labeling to keep us safe and our voices were heard. Following the ruling, NFCA created free resources to make the ruling easier to understand. Visit our dedicated FDA web section to access these resources.
NFCA Makes Major Strides in First-Ever Study of Gluten in Medication
In 2011, NFCA was awarded a two-year $50,000 grant to learn more about the potential effects of gluten in medications – the first grant ever given for researching this unexplored territory! We partnered with expert researchers to test gluten content in medications identified by the gluten-free community that seemed to cause a reaction. This testing concluded in September and NFCA will be sending the final report to the FDA in the coming weeks. Stay tuned for more news on this landmark study in 2014!
Advancing Research Initiatives
In addition to the gluten in medication study, NFCA is working to advance other areas of research. This year, we examined our free educational program for primary care doctors, designed to educate them on celiac disease and to recognize the signs in their own practices. After partnering with the Celiac Center at the Beth Israel Deaconess Medical Center (BIDMC) and the Mayo Clinic, NFCA found that 66% of doctors who took the course plan to incorporate celiac disease testing in the practice. It’s amazing how much of a difference education can make!
The NFCA team is hard at work each and every day to make a significant difference in the lives of those living with gluten-related disorders. We’re making phenomenal progress, and rest assured, we won’t stop until everyone is aware of celiac disease and no one remains undiagnosed. We are doing everything we can to help the gluten-free community live their lives to the fullest.
As the year comes to a close, I can’t thank you enough for your support and for being a part of the NFCA community, whether you've been diagnosed for 10 years or 10 days. 2013 has been quite the eventful year and I can’t wait to see what 2014 holds for our community!
To our GREAT health,
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Gluten-Free Holiday Recipes
The holiday season is upon us once again! As always, I am excited to share delicious gluten-free recipes for you to share with your family and friends. While slightly unconventional for the holidays, these recipes are sure to be a hit!
CHOCOLATE RASPBERRY MALLOW BARS
This recipe originally contained wheat flour, but I adapted it to meet my family’s gluten-free needs. They’re delicious!
TURKEY MEATBALLS IN CURRIED MANGO GRILLE SAUCE
There are curry houses on almost every corner in London, so many of my favorite childhood dishes were infused with curry flavors. This recipe was inspired by those dishes and is sure to add a different flavor to your holiday meal.
About Chef Oonagh Williams
British-born award-winning chef Oonagh Williams has a culinary arts degree and was trained in London and Switzerland. Based in New Hampshire, Chef Oonagh began adapting meals to gluten-free versions after her son was diagnosed with gluten and lactose intolerance two years ago. To learn more, visit Chef Oonagh’s website at www.RoyalTemptations.com or ‘Like’ her at Gluten Free Cooking with Oonagh on Facebook.
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Creating New Gluten-Free Holiday Traditions with Your Child
By Silvana Nardone
Get your gluten-free cooking and baking questions answered by the expert! Have a question for Silvana? E-mail Alicia at [email protected] and your question could be answered in a future NFCA newsletter.
How can I make the transition to the gluten-free diet easier for my child during the holiday season?
The holidays are a time when food is the focus and this can be stressful for parents of children newly diagnosed with celiac disease or gluten sensitivity. I know firsthand how worrisome that first gluten-free holiday can be! I also know that new traditions can be made and new favorite recipes can be cooked or baked to perfection. Here are my tips for making the transition easier for you and your child.
Shift the focus from food.
Baking goodies during the holidays is such a fun way to bring the family together, but it can cause some stress for mom and dad after a recent diagnosis. Keep in mind that it’s ok to break away from the food focus and embrace other holiday activities. You can color holiday-themed pictures with the kids, watch their favorite holiday movie, or craft new homemade decorations together. Years from now when your kids look back on their childhood holiday traditions, they won’t be thinking of the type of cookie you baked, but rather the times you spent making memories.
Continue reading this article for more of Silvana's tips and the recipe for these Buttery Cut-Out Cookies with Royal Icing.
About Silvana Nardone
Silvana Nardone is the editor-in-chief of the all-digital, gluten-free magazine, Easy Eats. Silvana is also the author of Cooking for Isaiah: Gluten-Free & Dairy-Free Recipes for Easy, Delicious Meals and publisher of Silvana's Kitchen, a blog that takes the guesswork out of how to feed a family with food allergies. Previously, she was the owner of a Brooklyn-based bakery, Fanciulla Specialty Foods, and the founding editor-in-chief of Every Day with Rachael Ray.
Celiac disease research is rapidly advancing and 2013 proved to be a big year for research news. Below are NFCA’s picks for the top research headlines of the year.
March: “Wheat Breeding” Not a Likely Cause of Increased Celiac Disease Prevalence
March: Celiac Disease and Increased Mortality Risk
April: Mayo Clinic Researcher: “Celiac Disease is a Disease of the Masses”
June: Elevated Gluten Antibodies found in Children with Autism, but No Link to Celiac Disease
July: Blood Pressure Medication to Include Warning about Celiac Disease-Like Side Effects
August: ImmusanT Begins Clinical Research Study to Explore Immunologic Relationship between Celiac Disease & Type 1 Diabetes
August: Celiac Disease and Lymphoma: Researcher Explains the Risk
October: Snapshot of the 15th International Celiac Disease Symposium
October: Alvine Pharmaceuticals Doses First Patient in Phase 2B Trial for ALV003 in Celiac Disease
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By Kristin Voorhees, MA, NFCA Healthcare Relations Manager
Last month, NFCA President Alice Bast and I headed north to New York City to attend Partnering for Cures 2013, a conference hosted by FasterCures, a center of the Milken Institute and an action tank determined to remove barriers to medical progress.
Partnering for Cures brought together leaders from across sectors in medical research including academic institutions, technology innovators, philanthropists, nonprofit patient advocacy groups and the pharmaceutical industry to speed up the dialogues needed to drive solutions in healthcare and science. No matter their background, all participants shared this in common: an energy to spur change for patients. And, at the end of the day, aren’t we all patients?
NFCA President Alice Bast (left) and
Healthcare Relations Manager Kristin Voorhees
at Partnering for Cures.
After spending two days filled with lectures, meet and greets and presentations, the take home message that I consider to be the most relevant for patients with a gluten-related disorder is this: Each person makes a difference and it’s critical that patients understand their role in research. Here’s what we can do:
Now, you may be thinking, “How does this apply to celiac disease? We have a treatment – the gluten-free diet. What else do we need to think about?” And, I will assure you that there is plenty to think about!
Once you become familiar with the ins and outs of the gluten-free diet, I encourage you to go one step further and seek out the field of science.
It’s more critical now than ever to understand how celiac disease works. We are on the cusp of a pharmaceutical revolution in celiac disease treatment. A vaccine, pill or other pharmaceutical treatment is no longer a pipe dream; it’s a very real possibility.
It’s time that we move beyond simply talking about the gluten-free diet to understanding both the root of the autoimmune condition and the scientific advances that are providing the opportunity to change the face of celiac disease. We as celiac disease patients have an incredible opportunity to participate in the development of treatments that could help millions of our peers.
Our goal at NFCA is to empower patients to take responsibility for their own health by providing the education and tools necessary to maximize their health and quality of life.
I encourage everyone to learn more by taking one or more of the following actions today:
NFCA has become well known for our free monthly webinars, each focused on a different aspect of living with celiac disease, gluten sensitivity and the gluten-free diet. The staff picked 5 webinars we highly recommend viewing.
Understanding the FDA’s Gluten-Free Labeling Rule Part 1: What You Need to Know
Featuring Tricia Thompson, MS, RD of The Gluten-Free Dietitian and Nutrition Consultant Celiac Disease, Founder of Gluten Free Watchdog, and Matthew Cox, Marketing Director for Bob's Red Mill Natural Foods
Gluten-Free Menu-Planning: Budget-Friendly Tips
Featuring Kathleen Reale of Be Free for Me
Kid’s Central Special: Packing the Gluten-Free Lunchbox
Featuring Garrett Berdan, RD, LD, Chef
Celiac Disease: Immunology 101 & the Drug Development Process
Featuring Ken Kilgore, MS, PhD and Francisco Leon, MD, PhD of Janssen Pharmaceuticals
Sex and the Celiac: A Focus on Reproductive Health
Featuring Stephanie M. Moleski, MD, Assistant Professor of Medicine, Thomas Jefferson University Hospitals
2013 has been quite a busy year for the NFCA team! We unveiled many new resources for the celiac disease and gluten sensitive communities this year. Here are a few of our favorites:
The Research Opt-In
As celiac disease research advances and evolves, NFCA wants to ensure that our community remains up to date and aware of new and ongoing research opportunities. That’s why we created the Research Opt-In feature. Click the link above to opt-in and stay connected through our regular, targeted emails!
Gluten-Free Dining Tips Sheet
This tip sheet walks you through important questions to help determine if a restaurant is able to safely accommodate your gluten-free needs. It’s also a GREAT tool for educating restaurants on safe gluten-free food preparation so don’t forget to leave the tear-off with your check the next time you think an establishment needs gluten-free training.
Fuel the Family Toolkit
For Celiac Awareness Month in May, NFCA focused on fueling your family with the information needed to be proactive and get tested for celiac disease. To help, we created the Fuel the Family toolkit, full of information and resources geared towards (you guessed it!) raising awareness.
2013 Gluten-Free College Student Toolkit
This toolkit is a one-stop-shop for college students navigating campus foodservice while living gluten-free on campus, whether they’re newly diagnosed or gluten-free diet veterans. Parents will find helpful tips and information here, too, on how to proactively work with the school’s foodservice team and ensure that your child can eat safely while at college.
What’s your favorite resource from NFCA? Tell us on Facebook!
Celiac disease, gluten sensitivity and the gluten-free diet are topics that pop up in news stories every day. Here are NFCA’s picks for some of the top headlines of 2013.
January: University Settlement Puts Gluten-Free Needs on National Stage
February: Article Explores Potential Causes of Celiac Disease
March: Celiac Disease Screening in Anchorage, Alaska
July: National Foundation for Celiac Awareness Forms North American Partnership to Launch First Joint Gluten-Free Certification Program Endorsed in U.S. and Canada
August: FDA Finalizes Gluten-Free Labeling Rule
September: NFCA Set to Give Poster Presentation at the 2013 International Celiac Disease Symposium
NFCA shares the Gluten-Free Recipe of the Week each Monday, so you can imagine how tough it was to narrow down so many recipes. Try these yummy gluten-free recipes for yourself to determine your personal favorite!
Tomato Soup with Eggplant from Gluten-Free Choices
Asparagus Risotto with Spring Pea Pesto from Sherrie Scaglione of With Food + Love
Warm Spaghetti with Capers and Arugula from Chef Simon Clarke and Allergic Living
Beer Batter and Herb and Cheese Stuffed Squash Blossoms from Bard’s Beer
Vegetable Spring Rolls with Rice Noodles from Thai Kitchen
Crab Quesadilla from Rudi’s Gluten-Free Bakery
Cornbread with Honey and Thyme from Jackie Ourman of C.A.F.E.
Coleslaw from Amy Green of Simply Sugar and Gluten-Free
Baked Chicken or Fish from Mary’s Gone Crackers
Cranberry Pecan Tart from Crunchmaster
NFCA receives loads of questions about gluten-free cooking, especially during the holidays. We’re joining forces with Thai Kitchen and top gluten-free bloggers and cooks to answer your questions so you can cook with confidence this holiday season.
NFCA gathered a pool of frequently asked questions about gluten-free cooking and divided them up between our team of bloggers:
Keep an eye out for the answers to the questions, which will be unveiled periodically throughout December.
Bonus! Gluten-Free Holiday eCookbook
Thai Kitchen is sharing their favorite gluten-free recipes that you can try out at your next holiday party (or any day for that matter!). When you download the eCookbook, you’ll automatically be entered into the gluten-free giveaway for your chance to win free products from Thai Kitchen. Stay tuned for the download link to this holiday eCookbook!
Just in time for the holiday season, NFCA and Cascade Ice are teaming up to bring you the newest printable guide – “Gluten-Free Holiday Drink Recipes.” You’re in for a festive treat with these drinks made from Cascade Ice’s sodium-free and caffeine-free sparkling water.
Allergy-Friendly, Gluten-Free Gingerbread House
By Laurie Sadowski
Put on your favorite holiday tunes, and get your oven mitts ready! Building a gluten-free gingerbread house (sans top allergens) is a holly jolly way to enjoy the holiday season.
Restaurant Dining during the Holiday Season
Once December hits, the rush of the holiday season is all around us. With all the shopping, preparing meals and baking gluten-free cookies, things can get pretty busy – and fast! The same rule applies to the restaurants experiencing an influx of people coming in for a meal, whether it’s in between shopping trips or for a family get-together. Chances are, you’ll find yourself with an invitation to dinner at a restaurant that you may or may not be familiar with. During the holiday rush, it’s more important than ever for people with celiac disease or gluten sensitivity to be diligent about vetting restaurants and their ability to serve a safe gluten-free meal.
Keep these tips in mind when dining out so you don’t miss a thing this holiday season!
Pick the restaurant if you can.
You know best from experience which restaurants can serve a safe gluten-free meal. Offer to make the reservations for your group so you can feel more comfortable dining out.
Call ahead – but not during the dinner rush.
You’ll have a pretty good idea of a restaurant’s approach to serving gluten-free meals after having a conversation with the staff. To ensure you have their full attention, call during slower times, when the chef is less likely to be busy making meals.
Make an earlier or later reservation.
Similar to the previous point, try to reserve a table slightly outside of peak dining hours. This way, there will be less going on in the kitchen and the staff will have fewer distractions from keeping your meal safe from cross-contact.
Check out online reviews.
If you’re not able to make the reservation yourself, check out reviews from other gluten-free community members. Their prior experience with the restaurant can help you make an informed decision about whether or not the establishment can meet your gluten-free needs.
For more helpful tips for dining out, download NFCA’s Dining Tip Sheet. Be sure to mention GREAT Kitchens training to restaurants so they can learn how to safely serve gluten-free meals to the celiac disease and gluten sensitive community. You can also view NFCA’s GREAT Kitchens list to see if there is a GREAT-trained restaurant near you.
The National Foundation for Celiac Awareness (NFCA) is excited to participate as a celiac disease expert in an upcoming Twitter chat with U.S. News & World Report. This #GlutenChat will cover a variety of topics, like who needs a gluten-free diet, common misconceptions, research and more!
Get more details about the chat from NFCA's Upcoming Events section.
Next week, NFCA will unveil the new and improved Getting Started Guide. This updated guide, which contains more information and up-to-date resources, is a helpful tool both for those newly diagnosed with celiac disease and other gluten-related disorders and those looking to better manage their gluten-free diet. We're so excited about the updated guide, we just couldn't wait to tell you about it!
Sign up to receive an advance copy before it's released to the public.
Thanks to Arrowhead Mills for making this update a possibility!
Don't miss out on any of next year's free webinars from NFCA! Sign up to receive an email notification when the 2014 Webinar Schedule becomes available, including the yet-to-be-announced date for "Understanding the FDA's Gluten-Free Labeling Rule Part 2: Focusing on Compliance."
Sign up now!
Celiac Disease in the News
by Alicia Carango, NFCA Communications Assistant
NFCA President Gives Keynote Speech at Central Pennsylvania Gluten-Free Expo
NFCA President Alice Bast was thrilled to be a part of the Central Pennsylvania Gluten-Free Expo. Alice was the keynote speaker and presented her talk entitled “Shifting the Focus: A Proactive Agenda for Reclaiming Your Life.” Due to the large turnout for the event and her speech, Alice presented twice during the expo. Featuring gluten-free vendors, educational information and plenty of samples to go around, the event was a huge success!
Read more about Alice’s presentation and the expo.
Gluten in Medications: Q&A with Congressman Tim Ryan
Congressman Tim Ryan sponsored the Gluten in Medicine Identification Act of 2012 and the Gluten in Medication Disclosure Act of 2013. NFCA conducted a Q&A interview with Congressman Ryan to learn more about the proposed bill and his interest in medication labeling and celiac disease.
Read the Q&A with Congressman Ryan.
College Student Wins Funding for a Gluten-Free Safety App
Is another gluten-free app on the horizon? It could be, thanks to Sam Hutchinson, a student at Southern Illinois University. His idea for a gluten-free safety app made him the winner of the annual “CEO National Elevator Pitch” competition and earned him $500 towards the creation of his app. Way to go, Sam!
Read more about the project.
By Alicia Carango, NFCA Communications Assistant
Gluten Free Philly App
Michael Savett of the popular blog “Gluten Free Philly” has outdone himself with his new app. This is one of the simplest, most intuitive apps I have found recently. Want to find a gluten-free sandwich in the Philly area? Just type “sandwich” into the convenient search bar and you’ll have a list of restaurants, including their phone numbers, addresses, websites and special notes, at your fingertips. Not sure what you’re in the mood to eat? Just click the “Near Me” button and the Gluten Free Philly app will pull up local restaurants with notes on which type of food they serve. There’s a convenient link at the bottom of the app to take you directly to the Gluten Free Philly blog and you can even email Michael if you have questions. While you should still be diligent about asking questions about the food preparation process and ingredients at every restaurant, your search for a good place to eat will be much easier with this new iPhone app! You can find it in the app store.
Gluten-Free with Dr. Jeri
Another gluten-free cookbook has hit the market! Gluten-Free with Dr. Jeri is an easy-to-follow cookbook that is ideal for people who are either just learning how to cook gluten-free or who are looking for new, easy recipes. There is not an overabundance of ingredients needed to make the recipes and the vast majority are simple, recognizable ingredients like fresh or frozen vegetables, gluten-free pasta and herbs and spices. Learn more from Dr. Jeri’s website.
Canyon Oats Gluten-Free Oatmeal
NFCA Vice President Jennifer North found this product at Natural Products Expo West and brought it back to Philadelphia for a product review. It had a great maple flavor and I loved the convenience of heating the oatmeal in the container it comes in. This oatmeal is only sold in local coffee shops, but you can order by the case online. It’s not clear if all of Canyon Oats’ products are gluten-free from their website, so be sure to double check and ensure you’re purchasing a gluten-free version. Head to www.CanyonOats.com to learn more.
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