11/01/2018

March 22, 2019

11/01/2018


COLUMNS

Note from Alice

Cooking with Oonagh

HEALTH/WELLNESS

Studies of how it starts and what could stop it are focus of celiac disease symposium
Award designed to attract researchers to a field neglected in NIH funding

Note from Alice: Thankfulness During the Holidays with Celiac Disease

As the holidays roll around, those of us with celiac disease often focus on the challenges the season brings. Festive parties and gatherings are almost always food-centric this time of year, and can feel like a minefield to navigate. However, this year I am very thankful and excited about the holidays ahead. Here are a few reasons why:

  1. I am thankful that we are one of the lucky ones diagnosed. Around 83% of people with celiac disease are still undiagnosed or misdiagnosed. They are going through their holidays as usual, maybe feeling terrible, and definitely leaving themselves vulnerable to long-term consequences of undiagnosed celiac disease. The short-term disappointment of missing out on the traditional stuffing will be far outweighed by the opportunity to live longer, better, and celebrating more holidays as a result. Now that is something to rejoice about. Don’t you agree?
  2. I am thankful for expanded gluten-free food options. In celebrating our 15 year anniversary, we took a look back at what we’ve accomplished and a lot, especially during the early years, focused on the expansion of gluten-free food items into the market. Our work included leading the way in making gluten-free food available and more affordable with the launch of the our first ever gluten-free expo, Appetite for Awareness. Events were held in 6 cities across the country and partnerships with Shoprite/Wakefern, Walmart, Whole Foods, Wegmans and more led to the explosion of gluten-free packaged goods available everywhere.

Additionally, because we all need confidence in making food purchases, we worked with the FDA and others to lead the way for safe and accurate gluten-free food labeling and a partnership with the best gluten-free product certification in North America, the Gluten-Free Certification Program. Fast forward to today, and I am so thankful that everything from gluten-free pie crusts to stuffing to even beer and gravy exist, making a totally gluten-free, celiac-safe, and absolutely delicious Thanksgiving meal possible.

  1. I am thankful for increased awareness. Due to our work (DoIHaveCeliac.org) and the Seriously Celiac Campaign, Diagnosis rates are going up, more people are understanding the seriousness of the disease and more research is being done. Additionally, throughout the year we’ve been working with the ad agency Hill Holliday to turn a negative into a positive. In 2019, we will be launching an awareness campaign with them and other celiac disease organizations to help blast the word out even farther about the seriousness of this genetic autoimmune disease.
  2. I am thankful for our new Chief Scientific Officer . As the first CSO for any celiac disease advocacy group, the highly accomplished and qualified Marie Robert, MD, has joined Beyond Celiac with an eye on accelerating new treatments and a cure. We are incredibly lucky and happy to have her on the team leading our science department.
  3. I am thankful for our successful celiac disease research symposium and the learnings gained about the leaps and bounds made in celiac disease research. We learned during the event that scientists delving deeper into celiac disease may find out why it starts by looking at bacteria in the gut. And they may find out how to stop the condition by developing drugs that specifically train the immune system into not reacting to harmful gluten. This growing understanding of the disease stems from increased research that has made substantial progress in the past decade, bringing new treatments closer to reality. Advances in diagnosis are also being made, including the potential to reduce the amount of time someone on the gluten-free diet would have to eat gluten again from while preparing to be tested for celiac disease.
  4. Lastly, I am incredibly thankful that we are able to announce our new Early Career Research Grant in the field of celiac disease . With help of donations from community members like you, we have created the Society for the Study of Celiac Disease – Beyond Celiac Early Career Research Award, a joint venture to attract exceptionally promising early career academic investigators to the field of celiac disease research. The award will provide a clear and bold opportunity to expand the scope of research in this field that, to date, has been underfunded and underexplored. Beyond Celiac is funding this two-year grant, and SSCD is managing the grant application and research program. The award is designed to attract researchers to a field neglected by NIH funding.

I am thankful this year for all this and more. And, I am thankful for being part of a community who cares about how we can live life to the fullest. Speaking of “you”, I am looking forward to a successful 2019 for celiac disease community — something you can help us accomplish. Your support will build a brighter future, especially for our kids and loved ones. We have our sights set on a cure for celiac disease. We have an aggressive plan and a specific strategy for forging pathways to a world beyond celiac disease. Please donate today to support our life-changing work . We can! We will!

To living life (and the holidays!) Beyond Celiac,

Alice Bast


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Gluten-Free Cooking with Oonagh

Gluten-Free
Boneless Stuffed Turkey Breast

Instead of whole turkey for Thanksgiving, try this stuffed turkey breast recipe for a delicious gluten-free twist on Turkey-Day…


GET THE RECIPE

Gluten-Free Cornbread

An easy and delicious recipe for gluten-free cornbread… perfect for the holidays… and can be made dairy-free easily as well!

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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Understanding the Complexity of Celiac Disease

Scientists delving deeper into celiac disease may find out why it starts by looking at bacteria in the gut. And they may find out how to stop the genetic autoimmune condition by developing drugs that specifically train the immune system into not reacting to harmful gluten. This growing understanding of the disease stems from increased research over the past decade. These were among key points made by experts at the Celiac Disease Research Symposium held last month by Beyond Celiac…


READ MORE


READ THE TOP 5 TAKEAWAYS FROM THE SYMPOSIUM

Beyond Celiac Announces Early Career Grant

Beyond Celiac is announcing the creation of the Society for the Study of Celiac Disease – Beyond Celiac Early Career Research Award, a joint venture to attract exceptionally promising early career academic investigators to the field of celiac disease research. The award will provide a clear and bold opportunity to expand the scope of research in this field that, to date, has been underfunded and underexplored.


READ MORE


Allergic Living: Classic Pumpkin Pie with Flaky Gluten-Free Crust

By Laurie Sadowski

Looking for a lightly spiced pumpkin pie with a flaky gluten-free pastry crust? We’ve got the sensational pie for you. Sample the filling before you spread it into the crust, and adjust the spices to your taste. Now let’s get baking – pumpkin perfection awaits…


READ MORE on
Allergic Living.

Photo credit: Allergic Living

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Halloween Facebook Live Recording

Maria and Claire discuss gluten-free candy options!


WATCH THE VIDEO

Share Your Story: There’s No CUre Without U

Record your celiac disease story to raise awareness! Help people understand the seriousness of this disease, raise awareness, and promote fundraising for much-needed money for research by joining in on our new campaign:“There’s No Cure Without U.” There can be no future treatments or a cure for celiac disease without participation from patients and caregivers like you! So that’s why we’re asking for you to record your celiac disease story and share with it Beyond Celiac for our campaign… It’s easy!


Steps to recording your story:

  1. Sign up for a login here.
  2. Download Storyvine app for free from the Apple Store on your Apple device. Log in with your registered email.
  3. Record your story – it’s super easy, the app walks you through it.
  4. Submit your video to help raise awareness! Your video may be featured on our website, YouTube page and social media channels.


WATCH AN EXAMPLE VIDEO.

“Donate” Your Birthday! Start a Facebook Fundraiser for Beyond Celiac

Happy birthmonth to all our November-born followers! When your big day rolls around, consider “donating” it to Beyond Celiac so that we can help fund new research scientists in the celiac disease field!


START YOUR FACEBOOK FUNDRAISER HERE

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