Note from Alice
The Year of You
15 Tough Questions Answered
Allergic Living Sneak Peek
Recipes for Christmas and Hanukkah
A Note from Beyond Celiac CEO Alice Bast
Each year, Beyond Celiac uses the December newsletter as a way to look back on the year and appreciate just how far we as the celiac disease community have come in the past 365 days. While every day and every year are all about you, we think that 2016 was a big year for our community. Keeping up with tradition, here are some highlights of the work we’ve done for you, the members of the celiac disease community.
Advocating for You in 2016
Nancy Ginter went to Washington, DC to advocate for labeling gluten in medications. Our Director of Administration met with state representatives to reinforce why we needthe Gluten in Medication Disclosure Act so we don’t live in fear of taking our medications.
We launched the #60ForCeliac campaign , which allowed you to easily share a video with others to show what it’s really like to live with this disease and how we live in fear of food.
We expanded our Patient and Family Advisory Council. This diverse group of people are impacted by celiac disease in some way. They help Beyond Celiac keep you and your needs at the forefront of our work all day, every day.
Keeping Your Gluten-Free Food Safe from Exposure
Beyond Celiac endorses the Gluten-Free Certification Program (GFCP). This year, the GFCP certified 30 facilities through the most rigorous certification standard in the world in order to keep you safe.
The GREAT Kitchens and GREAT Schools programs trained 630 foodservice professionals on how to safely prepare and handle gluten-free food for people with celiac disease so your family can eat without fear.
Increasing Celiac Disease Diagnoses
We heard from you that family members don’t always want to get tested. To help, we developed a research project which informed our Seriously, Celiac Diseasecampaign, which teaches people with celiac disease how to have the most effective conversation with relatives about their risk. Adding to that campaign, we screened at-risk relatives in North Carolina with help from our partners at Thermo Fisher Scientific and Dr. Schar USA. Together, we awarded a $20,000 matching grant to Wake Forest Baptist Medical Center to support this one-day screening event to help your relatives get their life-saving diagnosis.
Kristin Voorhees, MA, Beyond Celiac Director of Healthcare Initiatives and I hosted a panel discussion at Stanford Medicine X , a prestigious medical conference, along with key opinion leaders and Board Member Aimee Corso. We talked about the important role you have played in getting at-risk relatives tested for celiac disease. What we learned from you can help others in various disease fields reach their own at-risk populations.
We know that you are interested in advancing research towards a cure, and we’re expanding our Research Opt-In . The Opt-In is a way for our community to stay up-to-date on celiac disease research and get involved. Even through simply talking with us on Facebook, you are informing our working and helping to give information to researchers.
It has been a busy and exciting year. Together, we have worked hard to raise awareness, advance research and eat without fear. As always, we’ll have even more to share with you about our work and changes in the field in 2017. As we close out this exciting year, I also ask that you make a donation to Beyond Celiac, a non-profit organization, to help us continue this lifesaving work. We can’t do it without you.
To living better, longer,
This is a wonderfully simple soup to make for the holidays, Feast of Seven Fishes, parties, you name it! Too many bisques require cooking the crab or lobster, crushing the shell, cooking for several hours, grinding in a food processor and then sieving the resulting mess. Yes, it tastes wonderful, but my bisque is much easier to make.
See me make this recipe on New Hampshire’s ABC WMUR Cook’s Corner on Wednesday, December 7 during the noon news. I found that when I tried to make this the traditional way, the egg butter mix curdled too much. In England, we used to make this for weddings in a 16” square, deep cake pan using a complete bottle of sherry or brandy until the cake was sitting in a puddle of alcohol laced syrup.
About Chef Oonagh Williams
Chef Oonagh Williams has a culinary arts degree, celiac disease and other food allergies. She spends her time speaking and writing nationally on food for gluten-free and other food allergy diets, as well as 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.
Buy her Delicious Gluten Free Cooking eBook, complete with over 200 pages, full color photos, all for only $20. Like her at Gluten Free Cooking with Oonagh on Facebook where she posts recipes, links to her New Hampshire ABC appearances and products she’s found and tasted. Connect with her on Skype for help in following a food allergy diet.
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Beyond Celiac recently added new members to its Board of Directors. “We are proud to add respected innovators on our leadership team. These accomplished professionals will help us move the needle on the state of celiac disease awareness, diagnosis and treatments,” noted Alice Bast, Beyond Celiac CEO.
These new board members will help us reach our goal of advancing celiac disease research to help you and your family live life to the fullest, without the fear of food.
Robert J. Beall, PhD
Dr. Beall served as the President and CEO of the Cystic Fibrosis Foundation for 19 years. Under his leadership, the CF Foundation became one of the most respected voluntary health organizations in the country. It is recognized for its innovative approaches to bring new therapies to patients with the disease. The CF Foundation and its success have been the subject of articles in Business Week, Forbes, The New Yorker and other major publications. In addition, the foundation has been the subject of two Harvard Business School case studies. During Dr. Beall’s tenure, innovative medical programs contributed to a dramatic rise in life expectancy in CF patients, and a pipeline of nearly 30 drugs in development to treat all aspects of the disease, including the underlying cause of cystic fibrosis.
Glenna M. Crooks, PhD
As Founder of SageLife, LLC, Dr. Crooks has created new ways to understand, visualize and transform personal, family, career and business networks to improve health, happiness and success. Previously, as Founder of Strategic Health Policy International, Inc. she solved tough healthcare problems for business and government clients globally. Known as a “one-woman think tank” by her clients — businesses and governments globally — she brought significant innovations to the field, earning her recognition as a Disruptive Woman in Healthcare. She served as a senior policy advisor in government, appointed by President Ronald Reagan. Later, during Merck & Co., Inc.’s Most Admired Corporation years, her policy group was recognized as the best in the Fortune 500. She was Chair of the National Commission on Rare Diseases and received the Congressional Exemplary Service Award for Orphan Products Development. She was the first civilian to receive the highest award for contributions to public health, the Surgeon General’s Medallionfrom C. Everett Koop. Dr. Crooks new book, The Network Sage: Unleashing Your Pit Crew Network Superpower, will be published later this year.
Ciaran P. Kelly, MD
Dr. Kelly is Professor of Medicine at Harvard Medical School and Chief of the Herrman L. Blumgart Internal Medicine Firm, Director of Gastroenterology Training and Medical Director of the Celiac Center at Beth Israel Deaconess Medical Center, Boston, Massachusetts. He heads clinical, research and educational programs in celiac disease as Medical Director of the Celiac Center at Harvard. Dr. Kelly has longstanding clinical and research interests in intestinal infection and inflammation. He is the author of more than 150 clinical and basic research book chapters, invited reviews, and peer-reviewed publications appearing in such journals as Infection & Immunity, American Journal of Physiology, Gastroenterology, Journal of Biological Chemistry, Journal of Clinical Investigation, The Lancet and New England Journal of Medicine.
By Lisa Fitterman
Maybe you have just been diagnosed with celiac disease, or maybe you were diagnosed several years ago. You’ve been told what it is so many times, you can dutifully recite it by rote: an autoimmune condition in which the body reacts to the presence of gluten, a protein in wheat, rye and barley, by damaging the villi in the intestine that are essential for absorbing nutrients.
It may have taken years for you to be diagnosed with celiac disease as you were treated for other conditions. And now that you know what you have and that you need to follow a strict gluten-free diet to feel well, you find that’s not so easy. You have questions about everything from what nutrients you need, to how much damage accidental glutening does, to what the future holds for treatments . Or, you may want to know why you are still experiencing symptoms, even though you have been eating gluten-free.
To help with these issues, Allergic Living consulted three professionals – gastroenterologists Dr. Joseph Murray of the Mayo Clinic and Dr. Alessio Fasano of Massachusetts General Hospital, and Shelley Case, a registered dietitian who is an authority on the gluten-free diet. Their thoughtful and common sense responses should help you understand and manage your celiac disease better than ever.
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By Amy Ratner, Beyond Celiac Medical and Science News Analyst
One celiac disease patient describes the abdominal pain she feels after unintentionally eating gluten as being worse than childbirth.
Another says she keeps two sets of clothes – one for normal days and another in a larger size for the days when her stomach is so distended by the bloating that follows gluten exposure.
A third reports developing a rash after eating gluten that was so itchy she thought it was shingles.
Others have come up with their own vocabulary for talking about symptoms they experience. “Gluten gloom” sums up the anxiety, depression and mood swings common after eating something that was thought to be gluten-free only to discover it probably wasn’t. “Bathroom situation” is code for the diarrhea that forces many celiac disease patients to have a mental map of every restroom location.
These are the stories patients told on social media when Beyond Celiac asked a series of questions about gluten exposure and how it affects daily life. Taken together, the more than 600 comments paint a picture of frequent, severe and confusing symptoms even when patients are committed to maintaining a strict gluten-free diet.
Worry about these symptoms sometimes causes social isolation and almost always makes eating out difficult and fraught with anxiety.
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By Amy Ratner, Beyond Celiac Medical and Science News Analyst
With the power of your voice, Beyond Celiac is helping to shape a new model for engaging patients in research. Kristin Voorhees, MA, Director of Healthcare Initiatives, recently met with healthcare industry representatives at the Patient-Centered Clinical Trials 2016 conference to share the strategies Beyond Celiac is using to connect patients and researchers.
Across the healthcare field, patient’s stories are shaping what researchers study and how they study it. “We have direct evidence that the community’s interests in research news and participating in research are quickly increasing,” Voorhees says. “We are proud to share this information with the rest of the world.” Through the Beyond Celiac Research Opt-In, a growing group of engaged community members is spending four times longer reading content related to research than any other content on BeyondCeliac.org.
Beyond Celiac regularly partners with biotechnology and pharmaceutical companies to assist in the recruitment of patients for clinical trials, which are seeking to find alternative therapies outside of the gluten-free diet alone. For example, in 2014, Beyond Celiac helped to recruit patients for a phase IIb clinical trial by sharing information on digital and social media. We developed this strategy based on regular interactions with our online community. Even 10 months after first promoting the study, the community’s interest in participating continued to grow. And Beyond Celiac was a top recruiter for the trial due to a long-term and consistent relationship with our research partners.
CEO Alice Bast presented the patient engagement strategies Beyond Celiac is using to guide this kind of work at the International Society for Pharmacoeconomics and Outcomes Research 21st Annual International Meeting. We have shared findings at multiple conferences as a result of engaging with you online, and we are continuing to develop new ways to connect patients and researchers.
Informed and engaged patients are the gears that will drive celiac disease research into increased diagnosis, better treatment and more. Only you can provide a real-world view of what it’s like to live with celiac disease and what advances are meaningful. Beyond Celiac regularly engages patients in social dialogue about their needs and wants by creating a conversation with the larger community, with the goal of advancing research and ultimately finding a cure.
But you might wonder exactly how you fit into this conversation and what research means to you. Here are a few questions you might have and some answers from Kristin Voorhees to ease you into engaging in meaningful ways.
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By Alicia Carango, Beyond Celiac Web and Social Media Manager
I was in the kitchen at the Beyond Celiac office getting a drink when our Vice President, Jennifer North, yelled to me from her office. “Get the camera! I have something you’ll be excited about!”
It was the long-awaited Nima device, a portable tester that can detect gluten in some foods.
I yelled across the office to my boss, Claire Baker. “Claire! The Nima!”
She rushed over, we grabbed the camera, ran to the conference room and started filming our first-ever unboxing video. Antsy to try it out, we decided to skip our salads and order lunch from the local vegetarian place that we love (their butternut squash soup is to die for).
We stirred up the butternut squash soup, dropped it into the Nima, and were so happy to see the smiley face on the device, showing us that the soup was gluten-free.
We grabbed Jenn’s Pad Thai, knowing that it probably wouldn’t come up clean. It didn’t (it wasn’t advertised as gluten-free and Jenn doesn’t have celiac disease, but her daughter does).
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It’s Beyond Celiac tradition to recap the year each December. We still have work to do together to advance celiac disease research and push towards a cure. But, we always stop to appreciate just how productive the year has been. Recognize these conversations, articles and recipes?
We ask, you answer! We love talking to you on social media; it’s how we stay connected to you and your needs. Take a look back at some of the hottest topics of the year.
Each year, it gets harder and harder to pick the top research news. That’s because celiac disease research is growing year after year. Check out major news from this year.
It wouldn’t be a countdown without our list of general celiac disease stories that have made the rounds online and in print.
We know how much you love getting new recipes, so we post a new one each and every week. See your favorites from this year. A big “thank you” to the Beyond Celiac Blogger Ambassadors and the sponsors who make this possible!
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Don’t miss your chance to grab our last eCookbooks of 2016. We have everything you need for a safe and delicious gluten-free holiday season. These recipes are so good, your relatives won’t even miss the gluten!
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Celiac disease and food allergies are serious concerns during the holidays. While many in your family may have the best of intentions, not everyone knows how to safely prepare food for those with special dietary needs. We don’t have to tell you that it’s more complicated than simply using the right ingredients!
ConsumerSafety.org created a printable food allergen/gluten label to help you and your family call out which foods are not safe for people with food allergies or celiac disease. Print it out and use it this holiday as an extra line of defense between you, gluten and food allergens.
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You can support the free programs and services of Beyond Celiac this holiday season just by shopping through Amazon Smile. When you do, Beyond Celiac will receive .5% of eligible purchases. The best part? You will not pay any extra on your purchase. This percentage will be donated to Beyond Celiac by the Amazon Smile Foundation.
Here’s how to do it:
- Visit www.smile.amazon.com.
- Search for Beyond Celiac in the search bar on the bottom right hand side of your screen. You may still see us listed as National Foundation for Celiac Awareness (we changed our name in December 2015 to Beyond Celiac).
- Select Beyond Celiac (or NFCA).
- Start shopping!
The prices offered on Amazon Smile are the same prices found on Amazon.com. The only difference? You’ll help Beyond Celiac achieve its mission of helping people with celiac disease to live better, longer.
People living with celiac disease and their families are at the heart of everything we do at Beyond Celiac. Last year, we started the Patient and Family Advisory Council (PFAC) to help guide our work and make sure we are meeting the needs of the community. We interviewed our PFAC members so you can learn more about people just like you who help to drive our work.
Meet Danya Shegoleff
What is your relationship to celiac disease?
In 2008, I was diagnosed with celiac disease. My mother may have had undiagnosed celiac disease. She ate to gain weight until she was in her mid-30s. As a child, she had to use rubber bands to hold up her knee socks. In her 50s, my mother was told she had “irritable bowel syndrome” and was instructed to eat lots of Rolaids. My mother passed away from ovarian cancer at age 63. I feel like the actions I take in regards to living life with celiac disease are also for my mother.
Can you tell us a bit about your path to diagnosis?
I was seeing an osteopathic doctor for adjustments after a car accident. She was the first doctor to take inventory of all my health challenges. She suggested I get tested for celiac disease. I remember thinking, now with a laugh, how could I be so healthy if I had celiac disease? Joint pain, eczema, chronically infected sinuses, digestive issues, peripheral neuropathy, anemia, brain fog, etc. Mistakenly, I was mailed my lab results before I could see my new gastroenterologist. I interpreted the lab results myself and a feeling of great calm came over me. I thought – celiac disease, I can do this, I can wrap my arms around it and understand it.
Can you talk about your life after diagnosis and your experiences living with celiac disease?
Diagnosis was literally like taking a sigh of relief. Previously, I had periodically stopped eating wheat to help with chronic hay fever, so switching to gluten-free eating was not challenging. My symptoms began to clear up surprisingly quickly. My in-laws said that my skin literally changed color. Eight years ago, it was more of a struggle being understood at restaurants and that eating gluten-free was not a dietary choice, it was my only medicine. Servers would misunderstand my request for “no wheat”as“no meat.”Fortunately, eating out or socially is now easier. In the last few years, my challenges have been around the vague feeling of loneliness with celiac disease as I don’t know many people with the disease. So, I started an Instagram account as @celiacwellness. Very quickly, I was connected with people with celiac disease around the world and it was very heartening. I also volunteered for Beyond Celiac and have just started a Meetup for people with the disease in the San Francisco Bay Area called Hey Celiac!
In your opinion, what are the biggest flaws of the gluten-free diet?
On a personal level, I get tired of thinking about food with the frequency that I do. I’m always planning, purchasing and preparing food, which I love to do, but also tire of the responsibility. But I’ll happily have my feet in my shoes instead of in the shoes of a person who is still undiagnosed. I also feel as though our society is still in its infancy in understanding dietary restrictions and the fact that people with dietary restrictions aren’t fussy, high maintenance or just kind of nutty. It’s really a medical need.
What are your hopes for the future and what changes do you wish to see in the celiac disease field?
Some things I didn’t know to hope for until Beyond Celiac starting calling them out. For starters, a cure for celiac disease could be possible! I am so busy with the fundamentals of living with celiac disease that my long term vision isn’t that focused. I hope for better early detection testing such as we have for pre-diabetes; a sort of early red flag. Also, I am shocked, eight years later, that I cannot count how many times people have told me they were given blood tests for celiac disease and were not eating the necessary trigger, gluten, for the test to be accurate. Within the last month, I was consulting with a woman about her myriad of health problems and the gastroenterologist who performed her tests neglected to tell her that she needed to be eating gluten for the tests. In other words, there is still much education needed in the medical profession regarding celiac disease.
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Without proper training and education in the foodservice industry, people with celiac disease can’t eat without fear. We work to make sure restaurants making gluten-free menu claims are doing it the right way. That’s why we offer the GREAT Kitchens and GREAT Schools, Colleges and Camps programs. These are comprehensive programs that teach all foodservice professionals how to properly cook for people with a medical need for the gluten-free diet.
We think this program is so important for people living with the autoimmune disease. So, it’s no surprise that we are very excited to see the program mentioned in an article on a popular foodservice website. Beyond Celiac Scientific/Medical Advisory Council Member Rachel Begun, MS, RDN, CDN, included the program in her latest article, “Six Steps to Great Gluten-Free Service.”
You can help us spread the word about the GREAT training programs both online and offline. Share the GREAT Kitchens website link with your local restaurants, schools, hospitals, etc. and ask them to be trained. Or, you can print an informational sheet and deliver it in person.
And, of course, we can’t talk about GREAT without recognizing the dedicated establishments who have successfully implemented the training in their facilities. Check them out here.
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