Note from Alice
NFCA Founder & President
Sisyphus Has Nothing on Celiacs
They tricked me! This past March, the Philadelphia Award committee called me downtown to present about NFCA. Part of the vetting process, they said. I walked in expecting to see a discerning duo, but instead was greeted with smiles and applause by the dozen. Turns out, I had already won the award; the “presentation” was just a ruse to get me in the building.
While I may have been the only celiac in the room, I know that moment will be a defining one in our advocacy. The sheer fact that an organization devoted to celiac disease stood out among countless other causes is proof enough that we (the whole community) are doing something right. And that’s a tip of the hat we need.
Over the past year, we’ve come face-to-face with both sides of a double-edged sword. We’ve embraced the boom in gluten-free food, but were disparaged to see it coupled with “fad” diets. We’ve filled the web with resources about celiac disease and gluten intolerance, but now doctors recommend those sites instead of learning the information themselves. We’ve convinced restaurants to offer gluten-free options, but often feel less confident eating those meals than if we just ordered a plain salad. We celebrate the fact that we’re healthy and strong, but then fight to show the true pain that untreated celiac can cause.
No one said growing is easy.
Fortunately, we’ve got something going for us: persistence.
So many of us endured years of misdiagnosis, visited doctor after doctor, pored through websites to figure out what the heck was wrong with us. But we made it through. Now, we need to apply that energy to our advocacy.
This month, you’ll likely encounter a lot of people writing, talking or inquiring about celiac disease. And chances are, their knowledge of the condition, or its gluten-free treatment, will have some misconceptions. It’s frustrating, but instead of raising our hands in defeat, let’s raise our voice and clarify the issues.
Need some help? That’s what NFCA is here for. If it’s your physician who needs an update, learn how to Tell Your Doctor to Get Informed through NFCA’s continuing medical education program for physicians (www.CeliacCMECentral.com). If it’s a restaurant that’s sorely misinformed about gluten-free food prep, hand them an info sheet about gluten-free training through GREAT Kitchens. If it’s a reporter who needs a fact-check, send them to CeliacCentral.org (or better yet, our Director of Communications, firstname.lastname@example.org) to straighten it out.
Of course, it can’t be Celiac Awareness Month without some celebration, so check out www.CeliacCentral.org/awarenessmonth for details on all the activities we have planned. (Hint: Tons of bloggers and some Jeff Foxworthy-inspired fun.)
HAPPY CELIAC AWARENESS MONTH!
In honor of National Celiac Awareness Month, we’ve devoted much of this month’s newsletter to all the ways you can join the celebration. NFCA has a number of opportunities to learn more about celiac disease and spread the word.
For an overview of NFCA’s Celiac Awareness Month activities, visit www.CeliacCentral.org/awarenessmonth.
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Tid Bits with Tina
Hosting a Gluten-Free Family Barbecue
By Tina Turbin
There’s no better way to welcome the fun and freedom of summer than hosting your first barbecue of the year. You can choose any day for a gluten-free barbecue, but Memorial Day is often a great holiday for your event. (No school or work to spoil your plans!) Throwing a gluten-free barbecue is simple enough, but by following a few tips, you’ll find that yours will be a smashing success.
If possible, make the entire barbecue gluten-free. Feel free to invite your gluten-consuming family, friends, coworkers and neighbors over, and let them know ahead of time that the food and beverages will be gluten-free. You can prepare a list of gluten-free products they can bring in case they’d like to contribute to the barbecue, or you can just ask them to come early and help with the food preparation. Gluten-free kids will enjoy this opportunity to have so many people they know eating gluten-free food with them.
If you would like to have gluten-containing food at your barbecue, make sure it is clearly designated. I prefer to set aside a separate “gluten-free” table with a brightly-colored tablecloth and match the color of the serving dishes and the plates for the gluten-free foods.
Rest assured that gluten-free alternatives exist for all the traditional barbecue foods, snacks, and beverages, even beer. Your pantry is most likely already stocked with gluten-free condiments, sauces and marinades. You may prefer to bake your own hamburger and hot dog buns, but there are several gluten-free brands these days that make delicious ones. There are also several crowd-pleasing gluten-free snacks to serve your family and guests. (Browse NFCA’s Gluten-Free Hot Products blog for reviews of the latest products to hit store shelves.)
Serving a platter of inherently gluten-free fruits and vegetables is a healthy way to please both gluten-free dieters and gluten-eaters alike, but watch out for cross-contamination if you are also serving gluten-containing items at the party.
Similarly, gluten contamination can be an issue when it comes to grilling. While meat is supposed to be naturally gluten-free, some get contaminated during processing. If you’ll be cooking both gluten-free and gluten-containing meats and buns, you should keep them on separate grills or grates. You should also wash your grill’s grates very carefully before cooking your gluten-free barbecue meat in case of contamination from previous use.
Food is undoubtedly the central attraction of any barbecue, but don’t forget to keep your kids and other guests busy with a variety of activities, such as table tennis, swimming or even just running through the sprinklers. A gluten-free family barbecue is a great way for celiac and gluten-sensitive kids to feel like “normal” kids. With a ton of gluten-free barbecue favorites and an array of fun activities, they’ll be sure to feel just this way.
More about Tina and the "Danny the Dragon" children's book series:
Tina Turbin became extremely interested and involved in the subjects of celiac disease, gluten sensitivity and gluten issues a number of years ago, after being diagnosed as celiac after many years of unresolved troubles. Since then, she has engaged in diligent research and writing about these topics, weekly radio shows, developing gluten-free recipes and reviewing companies for celiac consumer safety.
Tina is an award-winning children's book author (DannyTheDragon.com) and donates her current children's audio book profits to the Celiac Disease Center at Columbia University Medical Center. To stay updated on her projects, sign up for her newsletter at www.TinaTurbin.com .
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Cooking with Oonagh
Gluten-Free Recipes for Mother's Day
By Chef Oonagh Williams
May is Celiac Awareness Month, but it also celebrates Mother’s Day. Recently, I learned that as much as three times as many women than men are diagnosed with celiac disease. I tend to agree with some of the comments, that it’s more because women are the ones that will go to the doctor and keep looking for an answer. We all know what it’s like trying to get our husbands to the doctors just for a physical.
Moms need a big thanks for all they do and the way they just know when something is not right, especially when it comes to health. So go ahead, hug your mom and give her a big thank you. Coping with a gluten-free diet is a pain; it’s expensive, time consuming, confusing, and a terrible guilt trip for any parent with a child needing a gluten-free diet. I have that same guilt trip with my son, even though he’s all grown up (supposedly). He still calls his Mom.
I came up with this recipe many years ago as relief from a sticky summer. No grill or oven needed!
CHOCOLATE RASPBERRY FUDGE CAKEEasier, quicker and lower fat than my regular chocolate cake, this is truly wonderful (and a little bit evil), even in gluten-free form.
These recipes are for Dad to make with the kids for Mom on Mother’s Day. Nothing out of the ordinary or too expensive for today’s prices. No fancy equipment. If you don’t have the right size baking pan for the cake, use a 9-inch pie plate or 8-inch brownie pan, or buy foil pans to bake in.
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. Chef Oonagh gives presentations and classes on gluten-free cooking and living, consults and guides people in adapting to a gluten-free lifestyle. She appears most months on her local New Hampshire ABC station, WMUR, as the featured chef.
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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Join NFCA for a Must-See Virtual Event
Last month, our Health Resource Q&A introduced you to Jill’s List (www.jillslist.com), an online directory for complementary medicine and alternative treatments. Now, our friends at Jill’s List are hosting an unprecedented virtual event on May 11, bringing together some of the biggest names in celiac and gluten-free awareness.
Should You Be Gluten-Free? is an interactive, web-based event featuring a panel of celiac and gluten-free experts:
Mark Hyman, MD, New York Times Best Selling Author and family physician
Alice Bast, Founder & President, National Foundation for Celiac Awareness
Jill Brack, Founder of GLOW Gluten-Free
Jill Shah, Founder & CEO of Jill’s List (moderator)
This one-of-a-kind event aims to educate both healthcare providers and patients, covering topics such as who really needs the gluten-free diet, how to recognize celiac disease and gluten sensitivity, what resources are available and more!
For more information about this event, read the Press Release »
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"Ask the Dietitian" Twitter Series Starts May 10
Four chances to tweet with the experts!
Each Tuesday, NFCA posts answers to your questions on “Ask the Dietitian.” This month, you can meet and chat with two of our dietitian experts on Twitter.
NFCA (@CeliacAwareness) is hosting four hour-long discussions at the hashtag #GFchat. The chats will take place every Tuesday at 8 p.m. ET, starting on May 10. Each chat covers a specific topic, but they will all use the #GFchat tag:
May 10, 8 pm- Newly Diagnosed: Gluten-Free Tips You Need to Know
Guest: Rachel Begun, MS, RD
May 17, 8 pm- Celiac Disease & Women's Health
Guest: EA Stewart, MBA, RD
May 24, 8 pm - Parenting 101: How to Support Your Gluten-Free Kid
Guest: EA Stewart, MBA, RD
May 31, 8 pm- Bored of the Same Old, Same Old: Shake Up Your Gluten-Free Routine
Guest: Rachel Begun, MS, RD
Patients, dietitians and healthcare providers are encouraged to participate!
For complete details, including how to submit a question, see the event listing »
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Did you know 30% of newly diagnosed celiacs are over age 60? For this population, going gluten-free (and staying that way) has unique challenges. So, what can you do?
Announcing NFCA's Webinar “60+: Meeting the Needs of the Mature
Wednesday, May 18th at 1 pm ET/10 am PT
Register Now »
Join NFCA as Veronica Alicea, MBA, RD, a well-known dietetic consultant in the celiac and gluten-free fields, leads an hour-long discussion on the increasing number of celiac diagnoses in the mature adult population. The webinar will also provide expert advice for fellow dietitians on how to best care for this unique population.
Discuss the growing prevalence of celiac disease among adults who are 60+
Address the unique needs of mature celiacs, such as diet compliance
Offer tips on how best to adjust to a gluten-free lifestyle when diagnosed later in life
Sponsored by Crunchmaster, this Webinar is free of charge. The only requirement is a working Internet connection!
About the Panelist
Ronni Alicea is a consultant dietitian for residential care facilities where she assures proper food and nutrition services. She manages a private nutrition practice, consults for several gluten-free and allergy-free companies and recently started Celinal Foods, a food company that addresses gluten-free challenges of noncommercial foodservice staffing. Her social media presence can be viewed on twitter as @glutenfreerd, LinkedIn as Ronni Alicea and Facebook as Celinal Foods.
Veronica earned a BS in Human Foods and Nutrition from Rutgers University and an MBA from Seton Hall University. She is a member of the American Dietetic Association, Consultants Dietitian in Healthcare Facilities, Nutrition Entrepreneurs, Dietitians in Complemtary Care and Dietitians in Gluten Intolerant Diseases, School Foodservice Professionals and Dietitians in Culinary Practice.
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NFCA Launches Kids Central
When a child is diagnosed with celiac disease, everything from school trips to sleepovers is affected. The condition can also be alienating, as snack time and birthday parties suddenly come with concerns. Now, Kids Central is here to help.
Located at www.CeliacCentral.org/kids, the new section will include content for kids, parents and friends who want to learn more about celiac and gluten-free needs. Preliminary content has been posted, with a full launch planned for Fall 2011. The section was launched with help and continuing support from Froose Brands, and Ian's has already signed on as a sponsor.
We want to add content that you and your kids want to see. To help us decide what ends up in Kids Central, take NFCA’s Kids Central Parents Survey. It only takes 5 minutes to complete, and your responses will have a direct impact on what we create!
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Alternative Appetites: Grilling with Thai Kitchen
By Dan Kohler of Renegade Kitchen
Thai Kitchen Grilled & Glazed Chicken
Grilling season is upon us, and I couldn’t be happier. Food always looks better with stripes; I want grill marks on everything. If you’re stuck in a rut of hot dogs and burgers (a rut I could happily impose on myself) try this: Grill a whole chicken. It’s a fun way to serve dinner to the whole family and a lovely presentation for a small dinner party. This recipe is sponsored by Thai Kitchen, and I used one of their new sauces to glaze my chicken as it was grilling. Their products are wonderful: no artificial ingredients, no artificial coloring, and the new sauces are vegan and gluten-free. I’m happy to have them in my kitchen.
(Win a sample of Thai Kitchen's new gluten-free Dipping & All-Purpose Sauces! To enter, simply leave a comment on the Alternative Appetites videos on NFCA's YouTube Channel.)
3 inches ginger
1 bunch scallions
1 whole chicken (weight isn’t important, get something that will serve your family)
Salt & pepper
Thai Kitchen Spicy Thai Mango Sauce
1. Prepare the ginger and scallions to stuff under the skin of the chicken. With a small spoon, gently scrape the papery skin off the ginger. It doesn’t take much pressure and shouldn’t cut away too much of the fleshy root. When you’ve peeled the ginger, mince it and set it aside. Mince the scallions and mix them with the minced ginger in a small bowl.
2. It’s chicken time. To grill a chicken you have to make it flat (otherwise it’s like trying to grill a football). Place the chicken breast-side down on a cutting board and using a very sharp knife or a pair of kitchen shears cut along both sides of the backbone and remove it entirely. Do not throw away the bone! You can save it in the freezer to make stock or throw it on the grill (the tail is very tasty). Once you’ve removed the spine, flip the chicken breast-side up and press down with great strength to break the breastbone and force the chicken to lay flat.
3. Slip your hand under the skin and loosen it all over the bird. Grab a handful of the ginger/scallion mixture and stuff it under the skin. Continue stuffing the ginger/scallion mixture until it is well distributed around the chicken.
4. Brush some olive oil on the skin of the chicken. This will help prevent it from sticking to your grill. Sprinkle salt and pepper over the skin. Don’t skimp. Seriously.
5. Preheat your grill. Get the lid shut and crank everything to high, you want the internal temperature to be around 400 degrees. When it’s ready, open the lid and drop the heat to medium. Bunch up a paper towel and soak it in some oil. Grab the paper towel with your tongs and brush the oil all over your grill. Slam the chicken skin-side down to get some grill marks. Cook it for 5-10 minutes, until it has some wonderful color. Flip the bird skin-side up and start glazing. Brush a coat of Thai Kitchen’s new sauce on the chicken and close the lid of your grill. Grill it for 20-30 minutes, checking every 5-7 minutes. Each time you check the chicken, you can brush on another coat of sauce, slowly building up the layers of flavor. You’ll know the chicken is ready when a thermometer inserted into the thickest part of the breast reads 165 degrees.
6. Pull the chicken off the grill and enjoy. Don’t forget the backbone!
Thai Kitchen Grilled Potato Salad
Oh how I loathe industrial potato salad. The pale yellow goop in a bucket casts a pall over summer picnics. And so I present you with this: Grilled Potato Salad. Potatoes, asparagus and red peppers, all grilled and dressed in a fine mayonnaise-based sauce spiked with Thai Kitchen’s Spicy Thai Chili sauce. The grill gives us a nice crust on the potatoes and a lovely char to the peppers and asparagus, a textural symphony! Thai Kitchen sponsored this episode and provided us with their new line of spicy and sweet sauces - all gluten-free and spectacular. Whatever you do, serve this salad at your next BBQ. You’ll be king of the backyard.
Red-skinned New Potatoes (or Yukon Golds, you want a waxy potato here)
Salt & pepper
Mayonnaise (Make your own! Recipe follows.)
Thai Kitchen Spicy Thai Chili Sauce
(All quantities are up to you. The recipe is easily adapted to feed a small family or a large dinner party.)
1. Start with the potatoes. Slice them into thick wedges and place them in a pot with cold water. Bring the water up to a boil for 5 minutes and then take it off the heat. Drain the potatoes and run them under cold water to stop the cooking while you prepare the other vegetables. You have to boil the potatoes before they hit the grill so they are cooked in the middle. They should be barely fork tender after the boiling.
2. Cut the red peppers into thick strips and toss away the seeds. Remove the tough ends of the asparagus and leave them whole.
3. Toss the pre-cooked potatoes with some olive oil, salt and pepper, and do the same with the red peppers and asparagus. Keep the potatoes separate so you can grill them first.
4. Crank your grill to medium-high heat and give it time to warm up with the lid closed. Open the grill and place the potatoes down. When they’re all spread out over your grill, shut the lid and cook the potatoes for 5-10 minutes, or until they have grill marks. Flip the potatoes over to get color on the other side and make room for the other veggies. Lay the asparagus and peppers on the grill and leave the lid open. Cook everything together for 7-10 minutes, or until the peppers and asparagus are lightly charred. Remove the veggies from the grill and bring them inside to dress the salad.
5. Using either your homemade mayonnaise (once you do it, you’ll never go back to store bought) or your favorite brand, whisk together a dressing of mayonnaise and Thai Kitchen’s Spicy Thai Chili sauce. Proportions are up to you. Want it spicier? More Thai Kitchen, less mayo. Like a creamy salad? More mayo, less Thai Kitchen.
6. Pour the dressing over your mixed grilled veggies and stir everything to combine.
7. Serve it to your family and watch them drool. It’s that good.
Make Your Own Mayo
(Free of gluten, dairy, soy, corn, nuts and tree nuts)
3 large egg yolks
1/4 cup lemon Juice
1/4 cup brown rice syrup
3 cloves garlic, minced
4 tablespoons whole grain mustard (make sure it’s gluten-free!)
2 tablespoons garlic powder
1/2 teaspoon salt
1/2 teaspoon ground black pepper
2 cups olive oil
1. In the bowl of a stand mixer, combine the egg yolks, lemon juice, brown rice syrup, minced garlic, mustard, garlic powder, salt and pepper. Whip it. Whip it good. Seriously, use a machine to blend these together; your arms will burn wielding a whisk.
2. Turn your mixer on high and pour the oil into the bowl in the thinnest stream possible. Yes, it will dribble down the side of your measuring cup; it will get on your counter; you'll pour it in cautiously slowly and sometimes too fast. The mayonnaise will survive as long as you try to pour it in slowly. This is how emulsification works.
3. When you've finished pouring in the oil, let it whip for another minute and then turn off the mixer. The mayonnaise should be pale yellow, flecked with mustard grains and thick (but not as thick as it will be after a stay in your fridge to chill). You're finished. Wasn't that easy?
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Star in an Alternative Appetites Video!
Wish you could cook alongside Dan Kohler in an Alternative Appetites gluten-free video? Now’s your chance!
Rudi’s Gluten-Free Bakery is hosting the Unbelievably Good Gluten-Free Recipe Contest, with entries accepted now through May 20. Submit your original gluten-free recipe using any of Rudi’s Gluten-Free products (including their new buns and pizza crust!) for your shot at fame. The Grand Prize winner will win a trip to Boulder, CO, score a Williams & Sonoma gift card plus Rudi’s swag, and prepare their winning recipe in an upcoming Alternative Appetites video.
Here’s how it works:
Participants are invited to submit their recipes on Rudi’s Gluten-Free Bakery Facebook page. The only requires are that the recipe is gluten-free and contains at least one item from Rudi’s Gluten-Free product line.
Fans can then vote for their favorites, which will determine the Top 10 Finalists.
Out of the Top 10 Finalists, Rudi’s judging panel will select 3 finalists for the Final Recipe Cook-Off at Restaurant 4580 in Boulder, CO. The Top 3 Finalists will each win round-trip transportation and lodging for two for the weekend of the cook-off, June 23-26, 2011.
The Rudi’s judging panel includes:
Following the Final Recipe Cook-Off, the judges will select the Grand Prize winner. Then it’s Lights, Camera, Action!
There are a number of other prizes up for grabs, including a Daily Giveaway.
Get more details in Celiac in the News and enter the contest at www.facebook.com/rudisglutenfreebakery »
Thank You for Spreading the Bread!
17,416. That’s how many $1 off coupons were downloaded as part of Rudi’s Spread the Bread campaign, and how many dollars are going to NFCA’s physician education program as a result. Because of your clicks, NFCA will continue to promote www.CeliacCMECentral.com as a free resource for primary care providers where they can learn the latest in celiac disease detection, diagnosis and treatment while receiving valuable continuing medical education credits. We all deserve better care, and this program puts that ideal within reach. If that doesn’t make you feel warm and toasty, we suggest you grab another slice of bread.
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Celiac Awareness Month: Facebook Exclusives
Are you a fan of NFCA's Facebook page? If so, you can gain access to exclusive Celiac Awareness Month content:
Tag Yourself in NFCA’s Celiac and Gluten-Free Mosaic
If you submitted your picture to email@example.com, now’s the time to tag yourself in NFCA’s Celiac and Gluten-Free Mosaic. The mosaic has been posted on NFCA’s Facebook page. It can be viewed by clicking this link or by visiting www.facebook.com/nfceliacawareness and clicking on the photos along the top of the page.
Thank you to all who submitted their photos. Let’s aim for an even bigger mosaic next year!
NFCA Releases “Celiac Aware Cities” Exclusive Report
Each year, NFCA ships thousands of brochures for distribution at awareness events, support group meetings, and medical offices across the country (Canada, too!). Now, NFCA is proud to release the organization’s first “Celiac Aware Cities” report, a profile of the top 5 regions that requested the most brochures in 2010.
The report is being offered as exclusive content to NFCA’s Facebook fans. To access the report, visit www.facebook.com/nfceliacawareness, “Like” the page, then click on the “Celiac Aware Cities” tab to download the report. If you have any questions related to the report or how to access it, email NFCA Online Content Manager Cheryl McEvoy at firstname.lastname@example.org.
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Pleased to Tweet You
Each month, "Pleased to Tweet You" will highlight an individual who chatted with @CeliacAwareness on Twitter. If you’d like to be featured, follow @CeliacAwareness and say hello!
Name: Gabrielle Simon
Find her on Twitter: @NYNJROCKMOM
Tweeting Since: May 2010
1. How long have you been gluten-free?
My son was diagnosed with celiac in July 2007, when he was 2 1/2 years old. While I do not have celiac, I make all attempts to eat gluten-free with him out of solidarity and to encourage him to try new foods.
2. What do you like to tweet about?
I prefer to tweet about celiac-related news items and events that will help raise awareness or further education about the disease. Since my group focuses primarily on the younger celiac set and their families, I also love to promote the great work of kids, teenagers and young adults who are making strides in the celiac community.
3. Why do you follow NFCA (@CeliacAwareness)?
NFCA has been an invaluable resource for my family since my son's diagnosis. I know I can count on NFCA for sound advice, up-to-date research, interesting perspectives from members of the gluten-free community and a well-rounded approach to the gluten-free lifestyle.
4. What's your favorite gluten-free dish?
We live about 30 minutes outside of Manhattan and take full advantage of the many gluten-free options the city has to offer. We love the risotto and gluten-free pastas at Risotteria (www.risotteria.com), and my son devours the sushi and Chinese fare at Lilli and Loo (www.lilliandloo.com). Eating at restaurants is very important to us because we want our son to know that he can enjoy safe and delicious dining experiences and that his celiac diagnosis should never dictate his ability to have a fulfilling social life.
5. What's one change you’ve seen since your son went gluten-free?
Even though it was only four years ago when my son was diagnosed, the words "gluten-free" were not yet part of the cultural lexicon. I remember grocery trips that ended in tears and frustration and the overwhelming fear that my son would never have a "normal" life.Now, I see the privilege of raising a gluten-free child and the great responsibility I have--as a mom and a support group leader--to empower him and educate others; to take what may initially feel like a negative and turn it into a positive.
6. In 140 characters or less, why should others join the gluten-free community on Twitter?
Twitter=Immediate access to countless celiac voices and personalities who become friends, confidants, advisors and supporters. Unbeatable.
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Each month, "Face It" will highlight a popular post from NFCA’s Facebook page, including a sampling of the responses. “Like” NFCA on Facebook and join the conversation today!
The National Foundation for Celiac Awareness: When you grocery shop, do you stick to the perimeter (produce, fresh fish/meat, dairy) or do you hit the snack and soda aisles the most?
Christy Houston Kershaw: I skip the snack & soda aisles unless I have to.
Kim Nixon: I am all about fresh!
Lisa Rogers: Most of the time it's the perimeter, there are a few foods I end up getting in the aisles, like some of my flours etc. :)
Liz Johnson: I go to the middle of my new Kroger – that’s the organic and gluten-free area – and that’s it! I love to make my own pizza, gluten-free and good for me!
Dawn Webb: Perimeter...and a few snacks to keep at home for non-gluten-free pals
Living Simply Gluten Free Philadelphia: Always on the perimeter!
Join the Discussion >>
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One of the best ways to inspire change is by voicing your thoughts. This month, you can speak up on these topics related to celiac disease and gluten-free needs:
NFCA & QAI Gluten-Free Certification Survey
We know you’re concerned about gluten-free labeling. Now, you can shape the future of NFCA and Quality Assurance International’s (QAI) gluten-free certification program for food and beverages.
Take the survey »
Kids Central Parents Survey
NFCA is building Kids Central, a hub at www.CeliacCentral.org/kids for gluten-free kids, plus their parents and friends. But first, we need to know what topics and themes interest you.
Take the survey»
Adults with Celiac Disease Needed for Research Study
Researchers at The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) are looking for people 18 or older who have biopsy-proven celiac disease that have experienced celiac-related symptoms within the last 3 months. Participants will take a week-long series of surveys, taking about 10 minutes per day. Participants will be compensated for their time.
If you'd like to learn more about the BIDMC study, please contact:
Dr. Daniel Leffler
The Celiac Center
Beth Israel Deaconess Medical Center
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The Man Behind the Mosaic
As you join in NFCA’s Celiac Awareness Month celebration, take note of the graphics accompanying the activities. Our Celiac Awareness Month logo, Blogger A Day badge and new Twitter background are all the work of volunteer Scott Lindsey. Yes, he’s even the designer behind our Celiac & Gluten-Free Mosaic.
We met Scott through imc2, a marketing agency where he serves as Group Creative Director. For the past 6 months, imc2 has been lending its resources and expertise to NFCA. Scott immediately took an interest in volunteering because his wife, Pam, has celiac disease.
Pam was diagnosed 6 years ago after years of symptoms, including severe bloating and cramping. Doctors thought she had anemia, and it wasn’t until Pam read an article in a health magazine that suspicions were raised. “I asked to be tested and my doctor said he didn’t think I had it,” she said.
Then the test came back positive.
Pam is finding it easier to manage her diet, especially as more gluten-free products become available. The couple even served gluten-free pizza at their wedding, to rave reviews from gluten-eating guests. But, there are still struggles. Scott is from Louisiana, so family gatherings usually mean flour is involved. So, the couple makes do. “We had a fish fry, so I used my mom’s camper to cook one for Pam using corn meal,” Scott said.
Scott’s willingness to take on any challenge made him a welcome addition to NFCA’s volunteer force. Along with Chris Mycek, Senior Vice President of Marketing & Development at imc2, Scotthas brought fresh ideas (and the occasional live guitar) to the group. With 19 years of experience in advertising, he’s also a whiz at making eye-catching creative. For more examples of his work, check out NFCA’s Sex and the Celiac logo and the new layout at www.CeliacCMECentral.com.
NFCA has a blast working with the imc2, and we look forward to dreaming up more big ideas throughout 2011.
Teen Hosts “Catwalk for Celiac” Fundraiser
Kayla Lafi has been hard at work planning and promoting “Catwalk for Celiac,” a fundraiser for NFCA that will take place on May 19 in Wood-Ridge, NJ. The event includes a fashion show, gluten-free dinner and raffle prizes. It’s a lot for anyone to take on, but Kayla’s doing it while she’s in high school.
That’s right. This fundraising extraordinaire is only 16 years old. We got the scoop on why she’s determined to put celiac in the spotlight:
When were you diagnosed? I was diagnosed when I was 8 years old after 4 years of being misdiagnosed with other disorders.
What inspired Catwalk for Celiac? I was inspired to Catwalk for Celiac because I love fashion and being on stage. I am a pageant girl, and fashion has become such a big part of my life. Celiac disease is also a big part of my life. I decided to combine the two for an event that’s unlike any other celiac fundraiser. I really want to make Catwalk for Celiac an annual event that inspires other teenagers to spread awareness in their community. It’s hard when you have to live a strict diet, so it helps to have someone to relate to.
Why did you choose to support NFCA? I chose to support NFCA because it was the one organization that I saw was really dedicated to raising awareness. I loved the different types of events and resources NFCA has on CeliacCentral.org.
What has been the hardest part about organizing this event? Did your age pose a challenge at any point? The hardest part about organizing this event is trying to plan the event while juggling doctor appointments, pageantry duties and, of course, school work. I thought when I first started organizing this event, I wouldn’t get a lot of donations to raffle off or have at the event. But to my surprise, this was actually the most rewarding part. Many skincare and food companies (gluten-free, of course) were completely willing to donate to the cause. My age did not pose any challenge. In fact, people were most interested to come and learn because they were so proud that I, a 16-year-old, was doing this by myself. They saw my dedication.
What advice do you have for other teens who want to help the cause? However and whenever you want to help the cause, just do it. There is so much out there that teens can do to raise celiac awareness, and if you can't think of anything, contact me and I would love to help. One of my goals this year is to start a teen organization called TLC (Teens Living with Celiac) for teens and kids who want to help the cause and spread awareness.
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Celiac Awareness Night at the Mets: May 27
Join the National Foundation for Celiac Awareness and R.O.C.K. Long Island for Celiac Awareness Night at the Mets. The New York Mets will be taking on the Philadelphia Phillies, and you can watch it all while enjoying gluten-free concessions.
Kevin Burkhardt, Mets Field reporter for SNY and fellow celiac, will join us for pre-game festivities. All participants will receive a Mets Ticket Holder and Lanyard with advance purchase through this offer. There will also be a silent auction, including the chance to be on the field for batting practice.
When: Friday, May 27, 2011
Time: 7:10 p.m.
Where: Citi Field
Tickets are still available! Visit www.mets.com/celiac to place your order.
Net proceeds of tickets sold through this offer will go toward celiac disease education and awareness.
Celiac Awareness Night at the Phillies: July 8
Batter up! Tickets are still available for Celiac Awareness Night at the Phillies.
Join the National Foundation for Celiac Awareness and members of the gluten-free community as they cheer on the Philadelphia Phillies. The team will be taking on the Atlanta Braves, and you can watch all the action in a special seating section right near the expanded gluten-free concession stand!
Update: The 200 level seats have SOLD OUT! Don't worry, there are plenty of 300 level seats still available. Be sure to select that level when ordering your tickets.
When: Friday, July 8, 2011
Time: 7:05 p.m.
Where: Citizen’s Bank Park, Philadelphia
To order tickets: Visit this link and use the code “CELIAC”: http://philadelphia.phillies.mlb.com/phi/ticketing/group/splash.jsp?loc=celiac
Net proceeds of tickets sold through this offer will go toward celiac disease education and awareness.
Other Celiac Awareness Month events:
For more gluten-free and celiac awareness events, visit our Upcoming Events page.
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All Things GREAT: Gluten-Free Resource Education and Awareness Training (G.R.E.A.T) Program Update
Exciting news for North Carolina area celiacs, or anyone looking to plan a trip this summer – Asheville, NC is now a gluten-free celiac-friendly destination. Last month, the Asheville Independent Restaurant Association (AIR) recruited more than 20 of the city’s finest kitchens to participate in NFCA’s GREAT Kitchens program!
AIR’s mission is to unite the independent restaurant community of Asheville NC as committed to local people, local philanthropies, local businesses, local food and the local economy, with a promise to preserve the authenticity of its mountain home through genuine food and signature hospitality.
We thank these wonderful establishments, institutions, and individuals for their commitment to providing safe and delicious gluten-free food, as well as their dedicated support of the celiac community.
To learn more about all that Asheville, NC, has to offer in dining, recreation, and arts & entertainment, visit www.ashevillenow.com.
*Tell your restaurant it's time to get GREAT*
Learn more about gluten-free restaurant training from NFCA >>
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By Cheryl McEvoy, NFCA Online Content Manager
Zatarain’s Gluten-Free Recipe Box
A few years ago, I went on a service trip to New Orleans. A fellow traveler was originally from the city and took us to a fantastic bistro after hours. I don’t know the name of it or where it was located, but I can still picture the long banquet table and how we shared fried okra, alligator bites and dirty rice family-style. I’d love to recreate that cuisine, but words like “roux” make it rather intimidating when you’re trying to cook gluten-free. To my pleasant surprise, Zatarain’s contacted us a few months ago with the hope of launching a gluten-free recipe box. Twenty of Zatarain’s rice mixes have gone through rigorous testing and were found to be gluten-free, which means a New Orleans-style dinner is that much easier to make. Now, if you’re like me and have trouble thinking outside the box, Zatarain’s has created a whole line of safe and flavorful meal ideas using their gluten-free rice mixes, and NFCA has the scoop! Check the Zatarain’s Gluten-Free Recipe Box each month for a new recipe to help jazz up your dinnertime.
“These Buns Are Gluten-Free” Apparel
There’s something to say for being cheeky. It gets people talking, and when your goal is to spread awareness, that’s usually a good thing. “These Buns are Gluten-Free” apparel, including t-shirts, shorts and sweatpants, can spark a conversation while you’re at the gym, beach or simply out for a stroll. The apparel also does double-duty: 5% of sales go to NFCA, so you can wear your pride and support NFCA’s programs at the same time.
Triumph Dining Gluten-Free Stickers
If you have a shared kitchen (some eat gluten-free, some don't), you probably have become very adept at labeling. There are separate cabinets, shelves and storage bins. At NFCA, we mark communal items with a big “Keep GF” in black marker, just to drive home the point. What’s easier than that? Stickers. Big, bright orange stickers that scream “gluten-free.” Slap one of these warnings onto a jar of mayonnaise or a tupperware container and even your kids’ unassuming friends will take note. This month, Triumph Dining is offering a Buy One-Get One Free deal, and 25% of the proceeds support NFCA when you use the code: Celiac Awareness.
Kellogg’s Rice Krispies Cereal
You may have heard the buzz a few months ago that Kellogg’s was crafting a gluten-free version of Rice Krispies cereal. Get your spoons ready, because the boxes will start hitting shelves in early June. We scored a sample box of Rice Krispies Gluten-Free cereal, and we’re happy to say, the gang’s all here. Snap, Crackle and Pop are on the package and in the bowl, just like the Rice Krispies you enjoyed pre-diagnosis. The cereal is made with whole grain brown rice, so it has a more “earthy” flavor than the original, but it still makes a tasty gluten-free Rice Krispies treat. According to Kellogg's, the product is made in a separate facility, and "each batch will be tested to ensure its gluten-free status." The best news? Its suggested retail price is the same as Original Rice Krispies.
For more information, visit Kellogg's website
*Get Hot Products updates from NFCA every week!*
Visit our Gluten-Free Hot Products blog >>
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Celiac in the News
NFCA Founder Wins Prestigious Philadelphia Award
Alice Bast, Founder & President of the National Foundation for Celiac Awareness, has won the Philadelphia Award. The honor recognizes an individual whose work has improved the well-being of those in the Philadelphia region. Alice was selected for her efforts to promote celiac and gluten-free awareness, particularly her success in making gluten-free food more accessible and driving diagnosis through physician education. The award earned Alice (and celiac disease) a spot on the front page of the Philadelphia Inquirer. Alice hopes the award will advance the cause, especially as the May 17 award ceremony is well-timed for National Celiac Awareness Month.
Read more about Alice’s Philadelphia Award win »
Gluten-Free Labeling Summit Gains Widespread Attention
More commonly known as “1 in 133” (www.1in133.org), the first annual Gluten-Free Labeling Summit was held on May 4 in Washington, DC. Organized by NFCA Athlete for Awareness John Forberger and Jules Sherpard of Jules Gluten-Free, the event urged the Food & Drug Administration to move forward in standardizing the definition of “gluten-free.” The call to action caught mainstream media’s attention, as 1 in 133 was mentioned by a number of news outlets, including USA Today and The Washington Post.
Watch NFCA’s Celiac in the News posts for photos & video from the event »
Today’s Diet & Nutrition Covers “Hot Topics in Celiac Research”
Look in the May 2011 issue of Today’s Diet & Nutrition for a feature on celiac disease and gluten-free living. “Hot Topics in Celiac Research” includes comments from NFCA’s Alice Bast about the rising prevalence of celiac disease and what’s being done to improve diagnosis and treatment of the condition. The article also cites a number of research studies that have caught the gluten-free community’s attention over the last year, including the ground-breaking discovery of three peptides thought to trigger the immune response in celiac disease.
Read the article in Today’s Diet & Nutrition »
Celiac Patients Want Alternatives to Gluten-Free Diet
Would you support a celiac disease vaccine? According to a survey of 310 individuals with celiac disease, 42% said they would consider a vaccine alternative to the gluten-free diet. Conducted by researchers in the UK, the survey found that more than 40% of respondents were dissatisfied with the gluten-free diet as treatment for celiac disease. While vaccine was the highest ranking alternative, some respondents also said they would consider options likeanti-zonulin (35%) and peptidases (23%). Modified wheat was ranked lowest among potential therapies, according to the researchers.
Read more about this survey in NFCA’s Research News »
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