Note from Alice
Health as Wealth
Cooking with Oonagh
Leftover Turkey Soup
Infants’ Role in Research
A long-term study begins
“Gluten-Free” Oats Labeling
Results of new research
Gluten in medications
What do they mean?
Tips for family gatherings
GF Baking Hacks
Some of us are bakers,
some of us are hacks
Take Control This Holiday
Tips on healthier eating
NEWS & UPDATES
Kids Will Change the World
Honoring our future
GREAT Goes to Boston
GF foodservice training
Is it just a coincidence that the words “health” and “wealth” rhyme? Ralph Waldo Emerson wrote that “The First Wealth is Health!” I’m starting to think that Emerson was on to something all those years ago and wondering whether those two words are closely linked even outside the world of poetry.
We all have a pretty clear sense of what “wealth” means to us. For a select few, it’s as simple as being born into a wealthy family and never having to think about where money comes from or how it’s spent. But for most of us, wealth is a lifelong pursuit, and we work hard to earn money for our everyday expenses while trying to stash away enough for retirement. And sure, it would always be nice to hit the jackpot or land a six-figure salary, but most of us can live comfortable and full lives knowing we will never be millionaires.
But what does “health” mean to us? This question strikes me as a more difficult, but more essential, question to answer. Is health living a long life? Or never catching a cold? Or staying the same weight since high school? Each of us will have a different answer based on our life experiences. Like wealth, some people just seem to have been born healthy without having to put much effort into it. But for most of us, especially those of us with lifelong conditions like celiac disease, health is something we constantly work to achieve or maintain.
When it comes down to it, physical and mental wellbeing require the same thing that financial wellbeing requires: Investment. We need to invest in our health! The beauty of investing in health is that you can start at any time, even if you haven’t made a single investment before now, and there’s no one right way to do it. For some people, investing in health means going for a walk around the neighborhood every day. For others, it means planning a week of healthy meals before going to the grocery store. For others, it means setting a reminder to take their pills on time each day.
At Beyond Celiac, we invest in health by educating people about celiac disease and providing patients with resources they need to live full, healthy lives. We invest in health by accelerating research towards a cure.
I look forward to hearing from you on your thoughts on the intersections of health and wealth. Leave a comment on our Facebook page to tell us what health and wealth mean to you.
To living better, longer,
Beyond Celiac CEO
Leftover Thanksgiving Turkey Soup
This is a variation on a soup I make with fresh ground beef or leftover roast beef. I thought it would be a nice change from the usual chowder-style turkey soup after Thanksgiving. This is good for using up some of the vegetables and meat leftover from your Thanksgiving meal. The more you add, the thicker the soup gets. I call for the vegetables to be finely chopped because I like to have a selection of vegetables in each spoonful. Get the recipe.
Fruit Muffins with Streusel Topping
These have more of a cake texture than muffin, but remember, “Muffins are cupcakes without frosting!” You can fill the muffin papers almost full, since the muffins dome, but don’t overflow. I’ve tried several variations with different fruits. If you use frozen berries, the batter is really stiff to stir, takes a bit longer to cook and is drier. I usually make the batter and divide it to make 2 different types of muffins. These muffins are best warm, but you can warm then in the microwave even after 2 or 3 days. Get the recipe.
About Chef Oonagh Williams
Chef Oonagh Williams has a culinary arts degree and has celiac disease. She spends her time writing and speaking nationally on food for gluten-free and other food allergy diets. She also offers cooking classes, dinner parties and one-on-one help. Locally, she teaches healthier food cooking classes for everyone, as most real food is naturally gluten-free and free of many other allergens. Her eCookbook, Delicious Gluten Free Cooking, has over 200 pages and full-color photos. ‘Like’ her at Gluten Free Cooking with Oonagh on Facebook, where she posts TV appearances, recipes, advice, consultations and conferences where you can meet her. Connect with her on Skype for advice on how to live a gluten-free and allergen-free life. Watch Chef Oonagh make an indulgent gluten-free dessert on New Hampshire’s ABC WMUR on Wednesday, December 7 during the 12 noon news.
By Amy Ratner, Beyond Celiac Medical and Science News Analyst
Katherine Connell sometimes wears great big bows in her hair, but the first thing you’ll notice is the big smile on her face.
Perhaps the sunny toddler is not quite what you picture when you think about celiac disease research.
But though she’s not quite a year old yet, Katherine is part of a study designed to examine each of the many factors that contribute to the development of celiac disease. The Celiac Disease Genomic Environmental Microbiome and Metabolic Study (CDGEMM) is being done by the Center for Celiac Research at Massachusetts General Hospital, MassGeneral Hospital for Children, and the Celiac Program at Harvard Medical School.
Caroline, Katherine’s mother, enrolled her infant daughter in the study because she is fascinated by what researchers could learn by studying infants over the five years they will be followed.
“She could be part of finding the cure for celiac disease,” Caroline says. “They could find a cure, or they could find out why someone develops celiac disease at 4 or 44.” Read more.
The study was conducted by a team of PepsiCo Inc. and Quaker Foods and Snacks employees who published “Gluten-containing grains skew gluten assessment in oats due to sample grind non-homogeneity” in the peer-reviewed journal Food Chemistry. It was reported on by celiac disease expert Tricia Thompson, MS, RD of Gluten Free Watchdog.
The study found that gluten-containing kernels of wheat, barley or rye may contaminate oats, but are difficult to detect when testing samples of the oats for gluten. The difficulty arises when a portion of the oats are taken to test for gluten contamination. Currently, testing involves grinding the oats with the intention of evenly distributing any gluten that may be present throughout the sample. The study found that grinding the oats does not actually ensure that gluten is evenly distributed. In effect, several samples taken from the same batch of oats may show three different results: one may show no gluten contamination, the second may show gluten contamination below 20 parts per million (ppm) and the third may show over 20 ppm.
This variation in results means that oats thought to be gluten-free because they tested with under 20 ppm of gluten (the FDA’s guideline for labeling food “gluten-free”) could actually contain a dangerous amount of gluten for those with celiac disease or non-celiac gluten sensitivity (“gluten sensitivity”).
You can read a more detailed summary of the study from Gluten Free Watchdog.
By Lisa Fitterman
Her family had been so careful to be gluten-free, but three years after little Aeverie Labile was diagnosed with celiac disease, she was experiencing the same debilitating symptoms all over again. There were the abdominal pains, the bloody diarrhea and migraines. Stephanie Labile would find her then 5-year-old lying quietly on her bed, stoic. Her eyes were closed and her hands cradled her skull. “Mommy, it hurts,” was all she could say.
Labile was worried and at a loss. Her daughter’s gluten-free diet had been working up until this point; if this was gluten again, just how was Aeverie getting exposed? Continue reading .
“Innovation.” “Cutting Edge.” “Patient-Centric.” Boiling Down the Buzzwords and What They Mean for Real People with Celiac Disease.
By Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives
Innovation is a word that gets thrown around a lot these days. The buzzword is used by people from virtually all backgrounds and sectors to tout their work as “cutting edge,” though whether or not their claim is true is often debatable.
Specific to healthcare, one type of innovation is patient-centricity.
Doctors, scientists, government researchers, biotechnology, pharmaceutical and diagnostic companies, and other key stakeholders across the healthcare continuum are using the term “patient-centricity” to describe a fast-growing movement where patients are being invited to the decision-making table. While this model has gained traction only in the past several years, it’s one that Beyond Celiac has followed and advocated for since its founding in 2003.
In the true spirit of innovation, we are always open-minded and looking for new ways to best carry out the organization’s mission in support of driving diagnosis, advancing research and helping the celiac disease community to live better, longer. We know that change is often required to improve and deliver better support, information and programs to our community and we aren’t afraid to consider new ways to help you best navigate day to day challenges.
Enter human-centered design. Continue reading.
Thanksgiving is a holiday that’s all about food and family, but that can be really challenging, especially when your family or friends don’t understand your needs. This year, we’re creating a forum for you to talk share with other people with celiac disease how they manage to make it through the holiday season – both physically and emotionally. You’re not alone in how you feel about the holidays.
Band together with your community members and use your shared knowledge to create the best gluten-free Thanksgiving yet. We’ll be sharing our tips, resources and recipes on social media using the hashtag #CeliacsDoThanksgivingToo. Looks for inspiration there, and be sure to share your own words of wisdom using that hashtag!
The holidays are supposed to be full of love and laughter, not overtaken by the fear of food. We rounded up Beyond Celiac staff and some of our blogger friends to give their advice on what to do in a given holiday situation. From tackling potlucks to handling well-intentioned relatives who don’t quite get “gluten-free,” we’ve got you covered.
When it comes to gluten-free baking, we’re not all natural Betty Crockers. Sometimes the plan to mix together the perfect all-purpose gluten-free flour goes terribly awry. Sometimes that “homemade” label is more of a good intention than the honest truth. And let’s not forget that for every ambitious amateur baker among us, there’s another who wouldn’t dare pick up a whisk. Whether you love to bake or hate to bake, we’ve got tips to get you through the holiday season. (To all of the skilled bakers who can whip up a gluten-free cake in a jiff: Please don’t judge our baking woes too harshly.)
The dishes at most Thanksgiving dinners are like culinary landmines for people with celiac disease. The good news is that with a few tweaks, substitutions and creative twists, the whole Turkey Day spread can be gluten-free. The even better news is that Beyond Celiac has gathered gluten-free recipes for every course and put them in our Celiacs Do Thanksgiving, Too eCookbook for you to download. The cookbook includes recipes from our sponsors and Beyond Celiac Blogger Ambassadors Cindy Gordon of Vegetarian Mamma, Taylor Miller of GlutenAway, Annette Pugliese of Best Life Gluten-Free and Jackie Ourman of Celiac and Allergy-Friendly Epicurean (C.A.F.E.).
By Julie Terrana of Best Whole Self
The holiday season creates a lot of room in our hearts for family, but leaves little breathing room in our pants. Since we only indulge in these favorite family recipes once a year, it’s rather hard to put the fork down. Thanksgiving is my favorite holiday, and I have spent years tweaking my recipes so that I can indulge without feeling guilty or ill from overeating. Here are six ways to experience a healthy, enjoyable Thanksgiving. This year, focus on what you can eat rather than what you can’teat, all the while keeping your waistline in check.
It is not uncommon for us to skip breakfast the morning of Thanksgiving so that we can leave more room for the delicious feast later that day. While this may sound like a smart strategy, not eating breakfast creates the potential for overeating later on. It is best to enjoy a light breakfast that is packed with protein and fiber to ward off sugar crashes and hunger pangs. I love a good protein and fruit smoothie or scrambled eggs with spinach and a side of berries. These are delicious and easy gluten-free breakfast options that will leave you satisfied. Read the rest of Julie’s tips here.
Each October, Beyond Celiac holds a special party for the members of our Samuel Gee Society. These members believe in our mission and have made the organization their philanthropic priority. Each year, we recognize someone who is moving mountains in the field of celiac disease. This year, we specifically honored six young contributors who are doing their part to make a gluten-filled world better and safer for people with celiac disease.
Meet these young superstars!
If you’re a regular follower of this newsletter, you’ll recognize Sophia. She has contributed monthly to Beyond Celiac through her advice column, Ask Sophia and on GlutenFreeHotProducts.com. This is part of her Bat Mitzvah project and we couldn’t be happier to work with such an enthusiastic young person!
Katelyn Koons lent her college experiences to other students grappling with living with celiac disease at college. She has been a longtime volunteer for Beyond Celiac, from writing blog posts to participating in the 2015 Research Summit. As a Mechanical Engineer, Katelyn worked with a team of four to develop an improved prosthetic ankle for female veterans at Walter Reed National Military Medical Center.
Diagnosed with celiac disease at just 8 years old, Nicole MacMaster uses her long-term adherence to the gluten-free diet to help other kids at school who are new to gluten-free. For her 10th birthday, Nicki asked for donations to Beyond Celiac, rather than birthday presents. She surpassed her goal of $700 and nearly doubled the contribution. Nicki couldn’t be at the Samuel Gee Society Reception to accept her award, so we’d like to give her a special shout out: Nicki, thank you for being so generous and for making the world a better place for kids with celiac disease!
Joss & Elle Miller
These resilient young girls as just 14 months apart and they are both diagnosed with celiac disease. For their birthdays, they made a video asking their family and friends to donate to Beyond Celiac instead of giving them birthday presents. The Miller girls are passionate about helping Beyond Celiac support the community. In fact, at the Gee event, Joss won a 50/50 raffle and donated her half back to Beyond Celiac. Luckily, we had a giant bag of goodies just for Joss!
Jack Simpson is a budding entrepreneur. To raise money in support of Beyond Celiac, Jack began selling homemade Christmas ornaments to his neighbors and families. Now, Jack has created “Jack’s Beans,” one pound bags of coffee that he sells each your to benefit Beyond Celiac. His slogan? “Make Your Coffee Count!”
During the Samuel Gee Society Reception, we also recognized our long time Board Member David Yadgaroff, Senior Vice President/Market Manager for CBS Radio in Philadelphia. His commitment to our cause and the generosity of CBS has allowed for Beyond Celiac to reach the masses with our messaging through the radio station. David has been a constant source of support and wisdom for Beyond Celiac.
We offer a big heartfelt thanks to all of our honorees and to all those who support Beyond Celiac. It’s your support that allows us to move our mission forward!
Beyond Celiac hosted another regional GREAT Kitchens training day. Previous locations included Monroe, LA, Denver, CO and most recently, we stopped in Boston, MA. Thanks to our partners and sponsors, Barilla Pasta, AllergyEats!, and University of Massachusetts Dining Services, two half day sessions were held at the beautiful Boston sky-view location of the UMass Club.
GREAT training instruction was provided by GREAT Kitchens Director Beckee Moreland and registration assistance by Beyond Celiac Vice President, Jennifer North. Paul Antico, President of AllergyEats! highlighted business and financial benefits for serving special diet customers. Beckee focused on GREAT Kitchens and Schools content that thoroughly addresses each step in creating a safe dining experience for all gluten-free guests.
Attendees from the morning session included restaurateurs, healthcare, hotel and catering foodservice staff, and food distributors from not only Boston, but also New York City and Maine. The afternoon session drew attendees from several college & university foodservice teams including University of Massachusetts, Boston University, College of Holy Cross, and Northeastern University and school nutrition professionals from surrounding public schools.
The conversation about gluten-free products and safe preparation continued during a lunch attended by all registrants, which was hosted by Barilla. This amazing lunch featured arugula salad with shaved Pecorino Toscano, Agilio E Oilo del Palion di Sienna (curry cauliflower with gluten-free rotini), and Pasta alla Norma with Sausage and gluten-free penne. Great food, great conversation, GREAT success!
Celiac Disease and Gluten Sensitivity Lecture with Dr. Benjamin Lebwohl
Wednesday, November 16, 2016 from 12 p.m. to 1 p.m. in Paoli, PA
Benjamin Lebwohl, MD, MS, Assistant Professor of Medicine and Epidemiology from The Celiac Disease Center at Columbia University will speak on important celiac disease topics: prevalence, risk factors, recent developments and potential treatment options. Learn more.
International Tampere Celiac Disease Symposium: Measuring Treatment Outcomes
November 24-26, 2016 in Tampere, Finland
The University of Tampere School of Medicine warmly welcomes medical professionals to attend the international Tampere Celiac Disease Symposium – Measuring Treatment Outcomes. Novel therapeutic approaches for celiac disease are at our doorsteps, and this scientific meeting will focus on ways to measure clinically significant gluten sensitive readouts in celiac disease and in clinical drug/device/vaccine trials. In addition, the second Maki Celiac Disease Tampere Prize (€15,000) for significant contribution to the fields of Celiac Disease and Gluten-Induced Disease Entities is awarded at the symposium. The meeting takes place parallel to the Gluten-Free Life Expo 2016 organized by the Finnish Celiac Society. Learn more.
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