08/01/2018

August 22, 2018

08/01/2018


COLUMNS

Note from Alice

Cooking with Oonagh

HEALTH/WELLNESS

Pill could make small amounts of gluten tolerable and lighten the burden of the gluten-free diet
Undiagnosed celiac disease can lead to stillbirths and miscarriages but diagnosis makes a difference
The Uphill Battle to Celiac Disease Diagnosis

LIFESTYLE

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NEWS & UPDATES

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Note from Alice: Invest in yourself! Working for a Brighter Future for Celiac Disease

You may have noticed our increasing calls for donations lately. As such, we’d like to share with you about how your investment is being put to good use. We at Beyond Celiac are working tirelessly every day to spread awareness and reduce diagnosis time. Our goal is to facilitate a life beyond celiac.

We operate with you in mind, all the time. Our work is to help accelerate treatments and eventually a cure. Study after study has shown that the gluten-free diet is NOT a true treatment, it is management of a serious disease. For many of us it is not enough – we have heard from you, and studies have shown that members of our community still have symptoms and intestinal damage despite being on the gluten-free diet. That’s why we dedicated a lot of time and effort (and yes, money) into developing Go Beyond Celiac and are now collecting patients’ stories to share with researchers to better help them understand celiac disease and to help push their research efforts forward. In addition to Go Beyond Celiac, we are also directly funding research initiatives. The only way we are going to understand celiac disease and get to a cure is by studying it.

To propel research while making sure that our community’s needs are met, we hired a chief scientific officer, and are the first celiac disease patient advocacy organization to do so. Marie Robert, MD, joined our team this spring and hit the ground running. She is leading the development of our transformational patient-centered research agenda focused on accelerating solutions so that we can live our lives to the fullest, free from worry about every bite. She is guiding our launch of the Beyond Celiac Young Investigators Awards through which we will fund two early career awards. Through these awards, we will encourage study in the field of celiac disease, making it an interesting and viable career path for the best and brightest.

Additionally, we have a full-time medical and science news analyst, Amy Ratner, whose work is to stay on top of and share the latest in celiac disease and gluten-related research. She is constantly updating our research news pages with important information, such as a recent study on the link between mono and celiac disease, how a vaccine for celiac disease might work, and the latest treatment options currently in clinical trials–information which she often gets directly from the researchers themselves.

Beyond Celiac has demonstrated that we can change the future. We did it already by ensuring that gluten free food is more readily available and more affordable. There was a time when we couldn’t get a loaf of bread or a slice of pizza. Now we have access where we live, work and play. We’ve got our sights on setting the record straight on celiac disease. Beyond Celiac puts celiac disease in the headlines by sharing accurate, evidence-based information with the media. Our work with the press helps raise awareness of celiac disease as the serious genetic autoimmune disease that it is, not the latest fad diet. Our next target is faster progress on research.

All of this is just a part of what we do each day at Beyond Celiac. Our mission is to unite with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure. But none of it would be possible without donations from people like you. So please consider giving today.

To living life Beyond Celiac,

Alice Bast


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Gluten-Free Cooking with Oonagh

Fruit Jell-O aka Fruit Jelly

Made with fresh ingredients, a gluten-free light verson of a classic recipe (adult version with wine included too!) GET THE RECIPE

 

White Chocolate Raspberry Almond Cake

This delictable gluten-free cake uses almond flour for a wonderful flavor. GET THE RECIPE

 

 

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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Study of New Treatment for Celiac Disease Moves Forward

ZED 1227 sounds like it could be the name of a robot in a future Star Wars movie. But it’s actually a new drug being developed to treat celiac disease. The drug would work by blocking an enzyme that reacts with fragments of gluten and makes them more recognizable to the cells that cause destruction of the nutrient-absorbing villi in those who have celiac disease…


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Celiac Disease Reproductive Health Heartbreak

A recent study published in the journal, Human Reproduction, shows how critical it is for physicians to consider undiagnosed celiac disease when a woman has reproductive problems, said Louise Grode, Ph.D., lead study author and a researcher at Horsens Regional Hospital. Results also highlight the need for early diagnosis of celiac disease in relationship to pregnancy.


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Allergic Living: The Uphill Battle to a Celiac Disease Diagnosis

By Alice Bast

As the head of Beyond Celiac, a leading global celiac disease patient advocacy and research organization, for the past 15 years, I have learned a lot about disease burden. Those who have faced the difficult path to diagnosis know that celiac disease is a serious, currently incurable autoimmune disease that affects much of the daily lives of those who develop it…


READ MORE on
Allergic Living.

Photo credit: Getty/Allergic Living

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Interview with Stephanie Moleski, MD of Jefferson Celiac Center

Gastroenterology specialist Stephanie Moleski, MD of Jefferson Celiac Center and Claire Baker of Beyond Celiac discuss on-going monitoring after diagnosis. Watch the recording of this Facebook Live video here.

 

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