12/01/2017

December 22, 2017

12/01/2017


COLUMNS

Note from Alice

It’s Our Time to Be Heard

H
oliday Fun

Cooking with Oonagh

HEALTH/WELLNESS

Bold Beyond Research Symposium experts focus on need for participation in celiac disease studies
Vaccine for Celiac Disease Gets Shot of Funding

$40 million investment will advance study of Nexvax2

For the first time, you can know for sure if you’ve been glutened

Investigation of new drug that could help patients struggling with symptoms gets NIH grant

Celiac Disease Research: Asking the Right Questions

FOOD/LIFESTYLE

Gluten-Free Holiday Cookbooks

Our gift to you: savory and sweet gluten-free holiday e-cookbooks.

NEWS & UPDATES

What’s Hot

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


donate button

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.”

Back to top


Advertisement




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!

PURCHASE YOUR MUGS HERE!

Back to top


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


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.

Back to top



Advertisement





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…


READ MORE

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…


READ MORE

At-Home Urine and Stool Tests that Detect Gluten Now Available

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..


READ MORE

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…


READ MORE

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

Back to top



Advertisement






Gluten-Free Holiday Cookbooks

Click on each cookbook cover to download a free PDF copy!






Back to top


Advertisement



What’s Hot

OUR SPONSORS & PARTNERS

DO YOU THINK YOU MAY HAVE CELIAC DISEASE?

Complete our Celiac Disease Symptoms Checklist to find out if you could have celiac disease and how to talk to your doctor about getting tested.
Beyond Celiac
  • PO Box 544
  • Ambler, PA 19002
  • Phone: 215-325-1306
  • Toll-Free: 844-856-6692
Press Room / Media Inquiries »
Contact Information
SIGN UP FOR UPDATES

The information found on this website is not intended to be a replacement or substitute for professional medical treatment or for professional medical advice relative to a specific medical condition. We urge you to always seek the advice of your physician. There is no replacement for personal medical treatment and advice from your personal physician.