10/01/2018

October 22, 2018

10/01/2018


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Note from Alice

Cooking with Oonagh

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First patient gets vaccine in new clinical trial, plus cholesterol drug shows promises in celiac disease monitoring
Nearly 45,000 new patients added over four years
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Note from Alice: Celiac Disease Research, Our Symposium and You

We at Beyond Celiac have been talking a lot about research these days. Yet while our focus is on propelling research forward toward treatments and a cure, we haven’t forgotten why these things matter in the first place: you. It’s the people affected by celiac disease, the patients and the caregivers, that keep us going each day. Those that are struggling with getting diagnosed, those that continue to suffer symptoms and intestinal damage, the parents worrying over their children’s safety at school and playdates, the kids left out of cupcake- and pizza-laden celebrations, and those that are just sick and tired of dealing with the everyday fear and isolation that celiac disease can bring.

Every day we are reminded that a diagnosis, while a relief in one sense, doesn’t alleviate the suffering of everyone with celiac disease. Even our own staff members deal with issues on a daily basis, such as our administrative assistant, Rosann. Diagnosed with celiac disease five years ago, Rosann still suffers with symptoms despite eating a strict gluten-free diet. She got involved with Beyond Celiac because she desperately wants a cure. According to Rosann, treatments or a cure would mean getting her life back.

It’s stories like Rosann’s and the dozens of others like hers that we hear about every week that power our drive and determination to accelerate celiac disease research. We know there’s not enough funding, there are not enough scientists in the field, and there’s currently not enough patient participation — all challenges we’re trying to solve with our new research and science driven agenda, which includes Go Beyond Celiac, funding new researchers in the field, and bringing on a chief scientific officer to set a research agenda for celiac disease in the United States.

It’s also the reason we’re hosting our 2nd Annual Research Symposium in just a few days on October 10 at 6 PM ET. We want to shine a spotlight on those who are working tirelessly to change the lives of those with celiac disease and inform you of what is currently being done within the field.

This year’s symposium will consist of a live panel presentation and discussion followed by Q&A, featuring:

  • Marie Robert, MD , Beyond Celiac CSO and Professor of Pathology, Yale University, as moderator, and the following panelists:
  • Ciaran P. Kelly, MD, Beyond Celiac Board of Directors, Director, Celiac Center and Director, Gastroenterology Fellowship Training, Beth Israel Deaconess Medical Center; Professor of Medicine, Harvard Medical School
  • Maureen M. Leonard, MD, MMSc , Clinical Director of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children and Instructor of Pediatrics at Harvard Medical School
  • Stephen D. Miller, PhD , Beyond Celiac Advisory Council,Judy E. Gugenheim Research Professor of Microbiology-Immunology and Director of the Interdepartmental Immunobiology Center at Northwestern University Feinberg School of Medicine

We hope that you will watch our Symposium via webcast so that you can stay up to date on the latest research and be involved in the future of changing lives for those with celiac disease. To register, please visit www.BeyondCeliac.org/symposium.

To living life Beyond Celiac,

Alice Bast


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Gluten-Free Cooking with Oonagh

Gluten-Free
Curried Butternut Squash Soup

This gluten-free soup is a good starter for people not sure of curry since it adds just a lift of a different flavor to a soup that is very mild. Perfect for fall!


GET THE RECIPE

 

Gluten-Free Pumpkin Cake with Cream Cheese Swirls

A gluten-free pumpkiny delight that’s perfect for Halloween celebrations and Thanksgiving dinner!

 

 

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.

 

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Signs of Progress for Celiac Disease Drug

Late last month, a vaccine to treat celiac disease was given to the first patient participating in a clinical trial designed to test the effectiveness of the new drug…


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Celiac Disease Being Diagnosed More Often in the UK

The celiac disease diagnosis rate in the United Kingdom increased to 30 percent in 2015, according to a new study, a one-quarter jump since the last study in 2011.


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Allergic Living: Simplify Your Gluten-Free Baking

By Laurie Sadowski

It’s high time to simplify things in the gluten-free kitchen. A few essential ingredients can bring outstanding results – from cookies to cakes, muffins and more…


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Allergic Living.

Photo credit: Allergic Living

 

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Interview with Dr. Bob Beall on the Future of Celiac Disease Research

Kate Avery, MPH, our Director of Research and Patient Engagement, interviews Beyond Celiac Board Member Dr. Bob Beall about his view for the future of celiac disease research.


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