Posts tagged ‘education’
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.
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.
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.
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!
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.
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,
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!
I knew when the Mardi Gras parade came down the main aisle of the exhibit hall with the band playing Dixieland and masked characters throwing beads that this was not going to be your typical food show. With lots of revelry and champagne, the 60th “Toast to Talent” Louisiana Restaurant Show was a full three days of fun, southern hospitality and amazing aromas and tastes. Fortunately, my husband Dave and son Cole agreed to come along. Since we are all in the foodservice business, we could learn a few things at the show and explore the city together at night.
When Sandy Riddle, Louisiana Restaurant Association (LRA) Exhibitors, called to invite me to speak at the LRA show this year I was so excited, but a bit sad too. I hadn’t been to New Orleans (NOLA) since my 20’s, before my celiac disease diagnosis (or as I like to call it “pre-CD”). I remembered all the amazing food like gumbo, etouffee, jambalaya and beignets, which of course all contain gluten, and all but the beignets contain roux. (Roux is a mixture of flour and butter cooked together until bubbly and brown. The desired color depends on what you are preparing and sometimes it can take a good long time of stirring and waiting to get the perfect color and taste.) But I was hopeful that I would find some new flavors and gluten-free foods while exploring the city.
I’ve met some really nice people at various shows across the US and always enjoy that first day when I’m able to meet fellow vendors setting up in the same aisle. It’s also a good time to check out which spots will have safe food choices when you need a nibble to keep up the energy and pass the time. Luckily, I happened to be smack dab next to one of the most popular exhibitors, Your Way Cuisines, a gluten-free roux company. Kristie Buford and her husband Chad are brand new to the gluten-free industry and saw a need and decided to fill it. They have created two roux bases made from corn and sorghum and they’re delicious. I have not had gumbo in 20 years and the gumbo they prepared with their product was full-flavored with a nice, smooth back heat.
Evenings consisted of strolls through the French Quarters from Bourbon Street to the Riverwalk. We tried to get the full NOLA experience, a concert at Preservation Hall, a ghost tour, shopping and people-watching on Bourbon Street.
Of course my guys had to find the bar, “Spirits” from the TV show Bar Rescue and purchase some kind of voodoo potion. We did find some tremendous restaurants that offered gluten-free options. Red fish was a popular entrée at many spots especially at Redfish Grill. The chicken with jambalaya risotto was succulent and spicy at Bourbon House and the service was impeccable. We really loved the music, atmosphere and Caribbean flavors at Rum House in the Garden District.
By day, I enjoyed meeting many of the chefs and restaurateurs from some of the famous and well-known establishments. We talked a great deal about the increasing demand and requests for gluten-free options, and how GREAT Kitchens, an online training course from NFCA, would be a valuable tool for staff to learn about safe preparation. When I was able to take a break from the exhibit, I found some tremendous booths showing off their gluten-free spice blends and recipes to create Cajun cuisine so I’m looking forward to putting my samples to good use. But by the end of the week, I was feeling a bit crabby; swampy heat can take its toll on a woman from Nebraska! NOLA certainly delivered new flavors, new recipes and new friends – even on a gluten-free diet.