Posts tagged ‘education’
Ageing Out
Watching your children turn into adults is an interesting process. I suppose it hits all of us differently and certainly each child is different. While my daughter, Molly, has been independent for some time now, I noticed during this holiday season that she really doesn’t want me to mother her anymore…at all.
She doesn’t want my help in packing her food or vetting the choices when we are guests in somebody else’s home. This is especially hard when the personal and professional collide.
Molly just turned 21 and will graduate from college in only a few months. I am about to schedule her final check-in at Children’s Hospital of Philadelphia (CHOP) where she will get her periodic round of blood work and she will visit with the registered dietitian to review her eating habits.
Having a healthcare team that I can put my complete trust into has been such a comfort to me over the last five years since Molly’s diagnosis. I know that I have been blessed with easy access to a great team of physicians, nurses and dietitians. I can only hope that Molly is able to find a new team of doctors that share knowledge without speaking down to her, listen to her instinct (which is usually right) and value her as a true partner in her care.

NFCA President Alice Bast presents Dr. Ritu Verma with an honoree award at our annual fundraiser, Chez Gourmet.
Thankfully, my professional relationship with the team at CHOP will continue. I have come to rely on feedback from Dr. Ritu Verma, a member of the National Foundation for Celiac Awareness’ (NFCA) Medical and Scientific Advisory Council and her nurse Patty Bierly when we develop patient materials, need expert advice on patient questions or need to bounce new ideas off someone in the field who sees patients every day, all day. Their patients are from all walks of life and live diverse experiences with a wide range of personal perspectives.
My six year old niece now visits the CHOP team since her celiac disease diagnosis last year. In seeing my family through two diagnoses, and in observing many different diagnoses within my family, from lactose intolerance to cancer, here are my tips to ensure a positive experience with your healthcare team.
1) View your healthcare providers as a team. Each specialty may provide a unique piece of the puzzle, but make sure you provide your entire health history to each provider. Symptoms may or may not be related, but the more thorough you can be, the better.
2) View yourself as the captain of the team. Or the most valued player. Ask questions and make sure you fully understand what your healthcare team is saying. If you have a provider that doesn’t have the patience to listen or the vocabulary to respond in a way you can understand, find another provider.
3) Be diligent. Don’t wait for the answers to come to you. Make sure you know all the tests that are being ordered and when they will return. Call for results – every day if you have to. Review the results yourself to ensure you understand them. Learn when new medications, supplements or dietary modifications are supposed to take effect.
4) Have a good attitude. Smile therapy works. If you can see the glass as half full you will be more content with the life that you have. It was the only one you were given, so make the best of it for you and for those around you.
When you are an educated and empowered healthcare consumer, you can more easily navigate what can be a treacherous road of obstacles. And you can conquer the course.
– Jennifer
GREAT Kitchens Gluten-Free Chef’s Table Tour Update from Portland & Seattle: Communication is Key
What an exciting time for GREAT Kitchens and gluten-free dining! I can truly say I just had the trip of a lifetime representing the National Foundation for Celiac Awareness (NFCA) on the GREAT Kitchens Gluten-Free Chefs Table tour. Portland, Oregon and Seattle, Washington were my destinations and the food and conversation were both exceptional and intriguing. I had the pleasure to work along the side of GREAT Chef Ambassador Chef Jehangir Mehta who is a master with spices and showcasing gluten-free ingredients. My favorite dish that he prepared was… well, all of them. But if I had to narrow it down, the halibut with beets and fried onion ring was primo DELISH!
As a true foodie, having the pleasure of tasting some extraordinary gluten-free meals prepared by some of the top chefs in the country was a thrill. In Portland, my favorite dish by Chef Naomi Pomeroy was the quince gallette and Chef Vitaly Paley’s icebox cake… crazy good. Plus, he made me banana bread for a special treat when we arrived for an early morning TV shoot. How sweet is that?
Chef John Howie’s tortilla soup’s spicy broth hit the spotand Chef Holly Smith’s cuttlefish ink risotto had such a mild fish flavor and striking presentation. What a contrast! These dishes celebrated fresh, local ingredients and honored key gluten-free ingredients like tapioca, chickpea flour, sorghum and infused flavors proving that gluten-free options should NOT be boring, bland tasting, or blah-looking – EVER!
All of the host chefs had a keen understanding of celiac disease and many had personal connections. Their interest was sparked by friends or family members that had a need for safe gluten-free meals which generated interest and intrigue in preparing their creations in a gluten-free manner to meet the same exceptional standard and quality as all of their offerings. During their presentations to the guests, they explained that when a “GF” request is made, serving gluten-free foods safely is always top of mind and caution in the kitchen is heightened.
However, I think the GREATest message from the tour was the importance of communication. GREAT Kitchens training emphasizes the importance of communication from taking the order to the serving of the plate. This is an important component in the training for the foodservice community to ensure safe preparation of gluten-free meals for our community. The training stresses continuous communication from host, server, manager, chef and server to get that order right with no mistakes along the way. But the communication doesn’t begin with the host greeting the guest; it really begins with the gluten-free diner. We really need to make our needs known and be clear to the restaurant and chef about what they are. People are eating gluten-free for all kinds of reasons from medical necessities such as celiac disease or non-celiac gluten sensitivity (‘gluten sensitivity’) or maybe other medical conditions, but it’s quite possible the diner is eating gluten-free for the perceived health benefit brought on by the gluten-free fad diet. This muddles the message that we need to ensure restaurants receive. Chefs have requests for all kinds of allergies, diets, substitutions, and even requests from plain old picky eaters.
When you go out to eat, make it clear. Communicate. Use NFCA’s Dining Tips Sheet as a guide. Say “I have celiac disease and I must eat gluten-free for my health. This is not a choice. Can you serve me safely?” See what sort of response you get – you might be pleasantly surprised.
How do you handle dining out gluten-free? What has your experience been like? Tell me in the comments section below or on NFCA’s Facebook page. The GREAT Kitchens Chef’s Table Tour stopped San Francisco today and we’re hitting Los Angeles on Wednesday, so be sure to check for updates on Facebook, Instagram or follow NFCA (@celiacawareness) and Chef Mehta (@jehangir_mehta) on Twitter. Be sure to search for the hashtags #GREATKitchens or #GFChefsTable!
Safe and delicious dining to you all!
– Beckee
GREAT Kitchens Gluten-Free Chef’s Table Tour: Stop #1 at Mehtaphor in New York City
The GREAT Kitchens Gluten-Free Chef’s Table Tour has officially started! The National Foundation for Celiac Awareness (NFCA) kicked off the tour at Chef Jehangir Mehta’s New York City restaurant, Mehtaphor, yesterday afternoon.
Gluten-free bloggers, food bloggers and reporters from the New York area came out to enjoy a 100% gluten-free lunch with us at Mehtaphor. And while I was excited to eat all of Chef Mehta’s gluten-free dishes (which, by the way, were fabulous), I was even more excited to have the opportunity to talk about the need for safe gluten-free food preparation. We even proved one of my favorite points – gluten-free does not mean taste free! There were no gluten-free bread or pasta substitutes on the menu, but rather Chef Mehta focused on serving a Mediterranean-style meal that left everyone completely satisfied (quite to the surprise of some of the attendees!). If ever there was a perfect meal to satisfy gluten-free and non-gluten-free eaters, this meal was it.
While we enjoyed Chef Mehta’s dishes, we all had the chance to chat about celiac disease and the medical aspect behind the gluten-free diet. Most of the attendees had some sort of connection to celiac disease or non-celiac gluten sensitivity (‘gluten sensitivity’). Some had a deep understanding of gluten-related disorders while others were still learning, which made for an incredibly diverse conversation. If there’s one thing I love, it’s raising awareness of an autoimmune disease that is still vastly underdiagnosed.
I have to admit, I was truly touched by the interest of the folks who attended yesterday’s luncheon. Sure, there was delicious gluten-free food to enjoy, but everyone was genuinely interested in learning about celiac disease and the GREAT Kitchens program. They wanted to understand why this online gluten-free training program exists and how much of a difference training makes for people living with celiac disease and other gluten-related disorders. Everyone was engaged with the program, asked a lot of questions and, to put it simply, they cared.

Chef Mehta did an amazing job of explaining why safe gluten-free cooking is a must for our community!
To all those who attended the luncheon – thank you so much for recognizing the need for people living with gluten-related disorders to have access to not just gluten-free meals, but meals that are safe and free from cross-contamination.
Today, Chef Mehta and I hung out at New York University (NYU) to serve gluten-free dishes to students in the Weinstein Dining Hall. There are some photos from the event on NFCA’s Instagram account you can check out now. Keep an eye on the blog for more updates from today’s stop and the rest of the tour. If you are on Twitter, follow NFCA (@CeliacAwareness) and Chef Mehta (@jehangir_mehta) to get the play-by-play of the tour. You can follow me as well at @abast. We’re using the hashtags #GREATKitchens and #GFChefsTable, so feel free to jump in the conversation!
– Alice
P.S. You can find more pictures from the tour on NFCA’s Facebook page. We’ll be updating the album at each stop on the tour.
GREAT Kitchens Gluten-Free Chef’s Table Tour – Coming to a City Near You!
The National Foundation for Celiac Awareness (NFCA) is proud to call Chef Jehangir Mehta, a finalist on the popular Next Iron Chef series, a partner in creating safe gluten-free options in restaurants so people living with gluten-related disorders can eat without fear.
NFCA team members and Chef Mehta will be taking NFCA’s online gluten-free cooking program on the road over the next six months. Introducing the GREAT Kitchens Gluten-Free Chef’s Table Tour! The tour will cover 10 cities with the goal of educating chefs nationwide on the need for gluten-free menu items that go beyond just using gluten-free ingredients. It is amazing to see gluten-free options popping up on menus across the country, but unless restaurants are educated on the importance of safe gluten-free food preparation, our community cannot dine safely.
Many things have changed in the 20+ years that I have been diagnosed with celiac disease. When I was diagnosed, gluten-free food was not even available in the U.S. Today, we have access to a wide range of gluten-free food, but the next step on our journey is ensuring all gluten-free food is safe for our community. A gluten-free diet is the only treatment for people living with celiac disease; there are currently no pills, vaccines or cures for celiac disease. Research is taking us closer, but for now, we have to ensure the people living with this autoimmune disease can have access to the food that is our only medicine.
It has been 10 years since NFCA first opened its doors and set out on its mission to raise celiac disease awareness and improve the quality of life for those on a lifelong gluten-free diet. In that time, I have met many chefs and foodservice industry professionals eager to understand celiac disease, the gluten-free diet and our need for food to be free from gluten-containing ingredients and the gluten that can enter our food through cross-contact (commonly referred to as cross-contamination by the gluten-free community). These professionals are eager to accommodate their guests, but first they have to know training and resources are available to help.
NFCA’s GREAT Kitchens program gives restaurant employees from the wait staff to the chefs the tools they need to serve safe gluten-free food. Our ten city tour will help spread the message that for the 3 million Americans living with celiac disease, a gluten-free diet is not a fad, but the only way to restore their health and reclaim their lives. Ranging from cities like New York, Chicago and San Francisco, we will be working with executive chefs in some of the best restaurants – complete with gluten-free cooking demonstrations, of course!
Stay tuned as we start the journey at Chef Mehta’s Tribeca restaurant, Mehtaphor on Tuesday, October 22. Follow the tour by liking NFCA’s Facebook page and following NFCA on Twitter (@CeliacAwareness) and Instagram (@CeliacCentral). Chef Mehta will also be live tweeting from the road. Follow him at @jehangir_mehta.
To our GREAT health,
Alice
Snapshot of the 15th International Celiac Disease Symposium
Last month several members of the National Foundation for Celiac Awareness (NFCA) team participated in the 15th International Celiac Disease Symposium (ICDS), the most comprehensive celiac disease meeting in the world. Held September 22-25, 2013, in Chicago, ICDS was a whirlwind conference with a chance to meet with NFCA’s distinguished Scientific/Medical Advisory Council and catch up with fellow colleagues from all walks of the celiac disease field. We also enjoyed the opportunity to meet new people and, finally, put faces to names of individuals we regularly work with remotely.
In her October 2013 newsletter note, NFCA President Alice Bast shared some highlights from NFCA’s experience at ICDS 2013. But this was just a sneak peek! Some of our NFCA staff have compiled an informal list of discussion topics and statistics that resonated the most. To give you an idea of individual interests, we’ve categorized the meeting highlights by staff member.
Head to NFCA’s Research News Feed on CeliacCentral.org to get all the highlights!
– Kristin
10 Easy Ways to Celebrate Celiac Awareness Day 2013
Raising awareness is a prime focus here at the National Foundation for Celiac Awareness (NFCA). So, you can image that we have lots of ideas for raising celiac disease awareness every day, but especially on Friday, September 13 – Celiac Awareness Day.
Even if you are short on time, we have ideas that will have a big impact if we all work together. Check out our 10 suggestions for raising celiac disease awareness:
Share the Celiac Disease Symptoms Checklist
Did you know 83% of the estimated 3 million Americans living with celiac disease are still undiagnosed or misdiagnosed? You can help put these people on the path to diagnosis by sharing the Celiac Disease Symptoms Checklist. Share it on social media or print it out and hand it to a friend, coworker or family member.
Provide your insight for parents of gluten-free kids.
Maybe your child has been diagnosed with celiac disease or non-celiac gluten sensitivity (‘gluten sensitivity’) for a while. Perhaps you have a newly diagnosed child, but found a great trick for making things easier for them and yourself. Either way, share your tip with NFCA for the Back to School Gluten-Free Tip series. When you do, you’ll automatically be entered to win two mixed cases of Crunchmaster Cheezy & Grammy Crisps. Grab all the details here.
Try a new recipe.
Cook something new for dinner this weekend. Not only will this help you find additional recipe options, but if you share it with a friend, you’ll be proving just how delicious gluten-free can be.
Wear green.
Show your support by wearing green – green pants, shirt, shoes, nail polish, hair ribbon, socks, whatever! If you’re feeling extra adventurous, upload a picture of you and your friends wearing green to NFCA’s Facebook page. We’ll add it to our “Wear Green” photo album.
Help get the facts out there.
NFCA has a section for printable guides. Consider printing a few, like the “What is Celiac Disease?” information sheet, and leave them at your doctor’s office or favorite local store.
Use a hashtag.
Wouldn’t it be cool if we got #celiacawareness trending on Twitter? Tweet a celiac disease statistic to spread the word to your followers. Feel free to give NFCA a shout out at @CeliacAwareness, too!
Donate or make a purchase in honor of Celiac Awareness Day.
At NFCA, we appreciate every donation we receive, whether it’s for $10 or $1,000, it truly makes a difference in our ability to provide free programs and services to people living with gluten-related disorders. If you live in the Philadelphia area, consider attending our 10 Year Anniversary Celebration, a fundraiser for the organization. If you can’t attend, you can always share the details with someone you know.
Some organizations, like Scent-Sations, make a donation to NFCA when one of their products are purchased. More details can be found here.
Talk to your family about celiac disease testing.
Since celiac disease is a genetic autoimmune disease, meaning that it runs in families, it’s important for family members to get tested, whether they have symptoms or not. Raise awareness in your family by sharing the facts. We have some tools to help you get the conversation started.
Make sure you are up to date on the latest celiac disease news and research.
Researchers are working hard to better understand various aspects of celiac disease. Visit NFCA’s Research News Feed to stay up to date on their findings and check in periodically with the Drug Development and Clinical Research page to see how you can get involved in advancing research.
The U.S. Food and Drug Administration (FDA) officially ruled on gluten-free food labeling. Learn what it means for you and your family by registering for the free NFCA webinar, “Understanding the FDA’s Gluten-Free Labeling Rule: What You Need to Know.” NFCA will also compile an informational sheet with key details from the webinar in the weeks following the live airing. If you can’t make it, don’t worry! Just register for the webinar and we’ll e-mail you a link to the archived version when it becomes available.
Share your ideas with NFCA.
These are just some of the many ways we can all work together to raise awareness. Tell us how you’re celebrating! Leave a comment on this blog, tweet us at @CeliacAwareness or drop us a line on our Facebook page.
Thanks for reading! I can’t wait to hear everyone’s ideas. Happy Celiac Awareness Day!
– Alicia
Be Well Philly Bootcamp – The Gluten-Free Way!
It’s summertime and lots of women are thinking about how we look and, after that, how we feel. On Saturday, June 8th, Philadelphia magazine hosted their annual Be Well Philly Boot Camp at the well-equipped Recreation Center on the campus of Drexel University. The goal was to motivate, educate, and empower women to get healthy and fit.
And, did they ever!
The National Foundation for Celiac Awareness (NFCA) was there to participate and cheer everyone on! After all, our mission is based on empowerment and education.
The 500 gals attending this amazing event checked out all manner of health and fitness items. Penn and Drexel medical teams were there with health tips and on-site screening. There were cooking demos hourly and delicious food sampling, plus group fitness classes — Zumba, yoga, and spinning. If learning how to climb a rock wall is on your bucket list, this was the place to be. Some attendees even grabbed a massage!
And, there was a chance to talk to the experts. All during the day, there were panel discussions on a wide variety of subjects from advice about the right running shoes to how to have more energy. Representing NFCA, I joined a panel called “Gluten Free Guide”. Our moderator, Cass Bailey from Slice Communications, has celiac disease and has embraced the gluten-free diet. Joining me on the panel were Michael Savett, publisher of the Gluten Free Philly blog, and Jennifer Fugo of the Gluten Free School.
It was fascinating! The audience had great questions and was eager to learn the “ins and outs” of the gluten-free diet. Plus, there was real interest in what celiac disease and other gluten-related disorders are all about. We talked about the difference between celiac disease and non-celiac gluten sensitivity (NCGS), along with getting tested and what to look for in restaurants as you begin the gluten-free journey. Getting family members tested was an important point for a number of audience members having relatives with celiac disease.
The big question was… “Is it a diet fad, a real medical issue or just a good thing to practice?” This panel did a great job of making sure everyone left with an understanding that there is such a thing as a medically necessary gluten-free diet. For real!
The overall point of the story is that there is no time like right now to start paying more attention to your health. No kidding, it actually does boil down to exercise and diet — perhaps a gluten-free diet!
– Nancy