12/01/2017
COLUMNS
Note from Alice
It’s Our Time to Be Heard
HEALTH/WELLNESS
FOOD/LIFESTYLE
Gluten-Free Holiday Cookbooks
Our gift to you: savory and sweet gluten-free holiday e-cookbooks.
NEWS & UPDATES
Note from Alice: It’s Our Time to Be Heard!
I expected our recent Bold Beyond Research Symposium to help those who attended or tuned in via live webcast to more clearly see what scientists are working on to better diagnose and treat celiac disease.
But I am most excited by the way it energized celiac disease patients to get involved in discovering options that go beyond the gluten-free diet. For example, Jessica Press, who has celiac disease and is the parent of a child who does, too, left the event held at Drexel University inspired to find tangible, high-impact ways to make a difference and encourage others to do the same.
“I found the session riveting. Just when I thought I was up-to-date on all things celiac, there was even more to learn,” she said. “More importantly, I left feeling so hopeful, and so totally motivated to help my celiac disease community get the attention, research funding, and treatment we could so dramatically benefit from.”
The critical need for patient participation in research studies was a key take-home message from the experts on our symposium panel. They acknowledged the need for more funding for celiac disease studies, but noted that even with that and with some of the best minds working toward additional treatments and, eventually a cure, we won’t get far unless our community becomes active.
“Without it, we might as well go home,” Ciaran Kelly, M.D., director of the Celiac Center at Beth Israel Deaconess Medical Center and member of the Beyond Celiac Board of Directions, point-blank explained.
When we selected, “We Can. We Will,” as a theme for Go Beyond Celiac, the new Beyond Celiac online community by and for people with celiac disease, we were acknowledging the need for those in our community to get involved by telling their stories and sharing their data. And now we want to build on the enthusiasm the Bold Beyond Research Symposium generated.
It was not clear to physicians, researchers or the Food and Drug Administration that celiac disease patients wanted something more than the gluten-free diet until they were finally asked, Dr. Kelly said at the symposium. Go Beyond Celiac can amplify patients voices on important questions like this by providing a place where you can share details about your journey to diagnosis, your daily life with the gluten-free diet, your experience with follow-up care and more. By compiling data, we can start to tell the collective story in a powerful way that further helps doctors, scientists, drug companies and regulators develop better ways to diagnose and manage celiac disease.
To find out what got Jessica and many others energized, you can watch the webcast or read about it. I think you’ll be compelled to do something, too. You can get started by signing up for Go Beyond Celiac . Together we can improve the lives of those who have celiac disease, and we will. Let’s cure celiac disease together.
To living life Beyond Celiac,
Alice Bast
Beyond Celiac CEO
The gluten-free community needs partners to achieve the goals of better treatment options and a cure for celiac disease. Takeda Pharmaceuticals partnered with Beyond Celiac by sponsoring the Bold Beyond Research Symposium.
“Takeda is pleased to have had the opportunity to engage with the celiac disease community and Beyond Celiac to improve understanding of research efforts and the opportunities in the coming years to improve the lives of individuals with celiac disease.”
Holiday FUN-draising!
Get your holiday shopping done while supporting a great cause! Purchase our otter-ly adorable mugs for all your friends and family and help support Beyond Celiac.
Each mug features an adorable hand drawn otter holding its very own Beyond Celiac mug!
Gluten-Free Cooking with Oonagh
Gluten-Free Black Forest Chocolate Cake
An indulgent recipe for a gluten-free version of a rich chocolate and cherry cake.
Gluten-Free Wine and Mushroom Sauce
A delectable gluten-free sauce that pairs perfectly with savory beef dishes.
About Chef Oonagh Williams
British born Chef Oonagh Williams holds a culinary arts degree and spends her time cooking, writing, speaking, and educating the public on gluten-free and allergy-free diets. She herself has celiac disease along with other food allergies. When not writing or speaking nationally on food, she teaches cooking classes, hosts dinner parties, and offers one-on-one help. Locally, she teaches healthier food cooking classes including vegetarian cooking for everyone, as most real food is naturally gluten-free and free of many other allergens. Chef Oonagh had the honor of being a speaker at the Boston Celiac Symposium, alongside top doctors from Beth Israel, Mass General, and Harvard Medical School.
Buy herDelicious Gluten-Free Cooking e-book, over 200 pages, full color photos, only $20;
like her Facebook page, Gluten-Free Cooking with Oonagh, where she posts recipes, links to her appearances, and gluten-free products she’s discovered; and connect with her on Skype for help in following a food allergy diet.
Patients’ Role Critical in Advancing Research
Patients who would like to see something more than the gluten-free diet to treat celiac disease have been looking to researchers for answers for years. But at the recent Beyond Celiac Research Symposium experts said patients themselves hold the key to developing a drug, vaccine or other options that can halt symptoms and intestinal damage suffered when those who have the disease consume gluten…
Vaccine for Celiac Disease Gets a Shot of Funding
ImmusanT has received $40 million in financing to fund further research into Nexvax2, a therapeutic vaccine to treat celiac disease. ARCH Venture Partners, who led the Series C financing, joins Vatera Healthcare Partners as an equity investor in the company…
At-Home Urine and Stool Tests that Detect Gluten Now Available
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For the first time, celiac disease patients and others who follow the gluten-free diet will be able to test whether they’ve consumed gluten using at-home urine and stool tests. Gluten Detective tests detect fragments of the immunogenic gluten protein, called GIP, harmful to those who have celiac disease..
Breaking Down Gluten to Treat Celiac Disease
Researchers developing a drug to treat celiac disease will launch a new clinical trial early next year as they further investigate whether it can effectively break down gluten in the stomach and render the harmful protein inactive…
Allergic Living: Celiac Disease Research: Asking the Right Questions
By Alice Bast
Some of you may have read an article this summer in The Atlantictitled, “Science Has Begun Taking Gluten Seriously.” It was a welcome piece, but what struck me was that while scientists are beginning to ask questions about gluten, they aren’t always necessarily asking the right questions – at least for those of us with celiac disease…
READ THE ARTICLE on
Allergic Living.
Photo credit: Getty/Allergic Living
Gluten-Free Holiday Cookbooks
Click on each cookbook cover to download a free PDF copy!
What’s Hot
- Go Beyond Celiac, join today to help advance celiac disease research.
- The Demonization of Gluten, a Freakonomics Radio episode on celiac disease and gluten.
- Gluten-Free Holiday Recipes, keep your meals delicious and safe this holiday season!
- Is It Gluten-Free?, join us on our Facebook page on Tuesday, December 12 at 12:30 PM EST for this informative live event.
- What Are the Long-Term Consequences of Gluten Exposure?, a video excerpt from the 2017 Bold Beyond Celiac Disease Research Symposium.
