Heroes Within Us
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Celebrating the Heroes Within Us
Every Celiac Awareness Month, I can’t help but think back to my diagnosis over 20 years ago and how I’ve come full circle. 20 years ago, I was weak, frail and convinced I had cancer, somewhere, and that the doctors wouldn’t find it in time. Today, I am stronger than I have ever been.
Life has changed in the celiac disease world over the past 20 years, too. We’ve come a long way from the days of special ordering gluten-free food from other countries and living with a “rare” disease. There’s still work to be done but, rest assured, I have a lot of energy left and the National Foundation for Celiac Awareness (NFCA) has big plans to help shift the focus away from solely the gluten-free diet and back to celiac disease and non-celiac gluten sensitivity (‘gluten sensitivity’).
This May, we’re celebrating Celiac Awareness Month through our Heroes Within Us campaign. Every one of us in the gluten-free community is a hero. Each time you talk to someone about celiac disease or gluten sensitivity, you make a difference. Every time you share NFCA’s Celiac Disease Symptoms Checklist, you increase the chances of someone else finallyfinding the answer to their ailments. With every waitress, waiter, chef or foodservice professional you educate on the importance of gluten-free training and proper protocols, you bring our community one step closer to safety within a gluten-filled world.
Each week in May, NFCA will unveil a community member who’s making an impact in the lives of those around them. Each is an ordinary person doing extraordinary things. Because, in reality, that’s what a true hero is. Heroes don’t always wear a cape, carry a sword or act as vigilantes in the dark of night. Real heroes are the people who are admired for their courage to take their own hardship and turn it into something positive for the greater good of others.
I hope that you will be just as inspired by our heroes as I am and I encourage you to follow in their footsteps. Individually, we can make small steps towards change for the celiac disease and gluten sensitive communities. Together, we can help push the gluten-free diet from the main topic of conversation and rise above the noise of the fad diet to emphasize the health issues behind it so that those with celiac disease and gluten sensitivity can eat without fear and live their lives to the fullest.
To our GREAT health,
I used to love making this with Portuguese sweet bread rolls or Challah or Brioche bread. I loved a local Portuguese sweet bread roll that I can’t eat now. It is almost impossible to find gluten-free versions of this bread, so I substituted an Udi’s bagel and it doesn’t disintegrate and doesn’t have any funny taste.
I make sweet panna cotta and got the idea for a savory version from a recipe from Wilson’s Farms in Lexington MA, one of my favorite places for fresh fruit and vegetables. I like that this recipe can easily be adapted for as many people as you need to “cook” it for. This makes life so much easier when you are either trying out a recipe or there are only two of you at home. I will eat this as a dinner with salad, as a side with fresh salmon, or garnished with shrimp or smoked salmon, even spread on bagels. This is not that strong, hits-you-in-the-mouth goat cheese taste. If you cannot tolerate goat cheese, use an unsweetened milk substitute for the half and half and leave out the sour cream/yogurt. It will still be good.
About Chef Oonagh Williams
Chef Oonagh’s adult son was diagnosed gluten & lactose intolerant – now dairy intolerant over 5 years ago with no previous symptoms. She has family members with celiac disease and follows a gluten-free diet for her own gluten sensitivity. Many of her students and clients are not just gluten-free, so she helps people with lactose, dairy, egg, yeast, soy, apple, pear, banana, rice, corn intolerances, etc. Chef Oonagh helps them to cook and realize there is life after a diagnosis of celiac disease. ‘Like’ Chef Oonagh at Gluten Free Cooking with Oonagh on Facebook. Chef Oonagh has a gluten-free living blog with all her recipes from NFCA and other recipes, as well as clips of her appearances on the local ABC station. Enjoy her ‘Delicious Gluten Free Cooking’ cookbook. Chef Oonagh also consults on Skype or by telephone.
Raising Awareness in the Classroom
Get your gluten-free cooking and baking questions answered by the expert! Have a question for Silvana? E-mail Alicia at
Celiac Awareness Month is prime time for helping your child’s teacher and classmates understand what gluten-free living is all about. Here are some ways to make it happen:
Demystify what gluten-free and celiac disease means to kids.
Teach a hands-on cooking class.
Throw a gluten-free cookie decorating party any time of year.
Ask Your Child’s Teacher to Host a “Wear Green” Day.
How have you raised awareness in your child’s classroom? Share your story on NFCA’s Facebook page and consider using this yummy gluten-free recipe to send in to your child’s class:
About Silvana Nardone
Every week in May, we will unveil a new community hero, each representing one of NFCA’s core strategies and values: education, empowerment, advocacy and advancing research.
NFCA believes there’s a hero in everyone and we encourage you to take action to help raise celiac disease awareness alongside us. We’ll provide you with resources throughout the month to help you get the word out about the medical need for the gluten-free diet.
In early April, NFCA asked community members to share their photos with us for a surprise project to be unveiled during Celiac Awareness Month. We couldn’t think of a better time to show you that every one of our community members helps make the organization stronger.
Let’s get #celiac disease trending on Twitter this May! Join NFCA for two special Twitter chats in honor of Celiac Awareness Month.
#NFCAchat: Celiac Disease Diagnosis
In anticipation of NFCA’s upcoming webinar, “Best Practices in Celiac Disease Diagnosis,” we want to hear your experiences with celiac disease diagnosis. Follow the hashtag #NFCAchat to be a part of the conversation. If you have family members who still need to be tested, encourage them to join in the chat, too!
#NFCAchat: Celiac Disease Awareness
Join NFCA as we talk about all things celiac disease and gluten sensitivity related. We want to hear your thoughts on the gluten-free fad diet, common myths and more hot topics in the community. Follow #NFCAchat to share your opinion! Be sure to enter the Erewhon Organics Gluten-Free Giveaway.
This Twitter chat is sponsored by Erewhon Organics
For almost ten years, Quest Diagnostics has been an enthusiastic supporter of NFCA and the celiac disease community. A dedicated partner in driving diagnosis, Quest has worked diligently and continuously with NFCA to educate both the physician and patient communities, activities that have helped to move the bar on celiac disease diagnosis. We are proud of our success to date. But, there is still much work to be done. It is imperative that we help the 83% of Americans who unknowingly live with celiac disease to gain a prompt and accurate diagnosis.
That’s why NFCA is pleased and proud to stand behind Quest’s new pilot multi-media program specifically geared toward encouraging people to get tested for celiac disease. Launched earlier this year, Quest’s new “Emoticons” campaign raises awareness of some of the more common indicators of celiac disease, including IBS-like symptoms such as diarrhea, constipation and stomach pain, as well as extra-intestinal symptoms such as migraines and depression. The Quest campaign currently is being piloted in Kansas City, Missouri and Hartford and New Haven, Connecticut, locations prepared to support newly diagnosed patients.
Most importantly, NFCA applauds Quest for emphasizing the essential and important role that a simple blood test plays in gaining a celiac disease diagnosis, an element that is increasingly forgotten as more and more people opt to “go gluten-free” without first asking to be tested.
Visit Quest’s new website to check out the Emoticons campaign and help spread the word about the many signs and symptoms of celiac disease — and the importance of testing.
NFCA would like to extend a warm thank you to the companies who support us all year long, especially during Celiac Awareness Month. Thank you for your help in making gluten-free options available for our community!
By Jennifer North, NFCA Vice President
During Celiac Awareness Month, you will see a lot of statistics thrown around and you may notice that the size of the gluten-free marketplace isn’t always consistent.
Thanks to the market research firm, SPINS, we do have an accurate count of where the gluten-free industry stands today: a whopping $20 billion. We’ve certainly come a long way when it comes to the availability and affordability of gluten-free food.
With today’s technology that can track everything from the shoes we purchase to our movie preferences, it’s easier than ever before to understand consumer trends. What makes SPINS data reliable is that it’s based on scan data from register purchases from independent groceries, supermarkets and big box stores like Target and Walmart.
Even so, how can the numbers vary so much? Some estimates of the gluten-free marketplace are closer to $6 billion.
Many research firms spend their time collecting data using a wide variety of methods from surveys to company earnings reports. Each company has its own formula. What may account for some of the differences, though, could be the categories counted when calculating the numbers. For example, some calculations might exclude supplements (a $3.3 billion category, according to SPINS). Some may be correct for products like Frito’s and Chex, which are mainstream products labeled gluten-free, but certainly the bulk of people purchasing Frito’s are not buying them because of their gluten-free status.
While it’s valuable to understand the buying power of gluten-free consumers, the overall scale of the marketplace, as represented by the availability of products labeled gluten-free, is significant in that it demonstrates, in a tangible way, that those with celiac disease and gluten sensitivity are no longer on the fringes. We can walk into any supermarket or gas station minimart and find products that we know are safe.
When Alice Bast founded NFCA 10 years ago, she ordered her food by mail from Canada. Together, we’ve made great strides in exercising our consumer voice and creating demand for better, more accessible options. NFCA made a commitment to this endeavor very early on. We continue our commitment today to ensuring that gluten-free food is affordable, accessible, safe, tasty and understood.
Gluten-Free Flour Power
By Laurie Sadowski
So long, dried out desserts. Gluten-free baking unveils a new generation of exciting ingredients and techniques for pasty perfection.
Just one plain flour could produce thousands of recipes – or so was the case until my celiac disease diagnosis. Suddenly that lone component had to be replaced by a combination of three, four or more.
But as I soon discovered, experimenting with gluten-free flours adds a new dimension of flavors and textures that aren’t possible when working only with wheat flour. Plus by understanding the taste, consistency and composition of other gluten-free baking ingredients and how to use them, the sweet smell of success becomes easy to achieve.
Celiac Awareness Month Special! Restaurants Can Receive 50% Off Gluten-Free Training
We think people living with celiac disease or gluten sensitivity should be able to eat without fear wherever they go. We work all year long to train restaurants in safe gluten-free food preparation through our online training program, GREAT Kitchens. Now, we’re asking for your help in making more restaurants “celiac-safe.”
Tell your local restaurants about the GREAT Kitchens program and encourage them to sign up for training during May. When they do, they’ll receive 50% off the training. You can even treat your favorite chef or foodservice director to the gluten-free training by signing them up here and using coupon code 50%GFDine14.
To learn more about the GREAT Kitchens program, you can direct your local restaurants to www.beyondceliac.org/GREAT or download our Gluten-Free Dining Tips sheet, which contains an easy tear-off informational sheet.
Be sure to tell your restaurant to use coupon code 50%GFDine14 when signing up!
Free Webinar: Best Practices in Celiac Disease Diagnosis