73: Patient Empowerment with Juanita Belton

Liz (@yeet.that.wheat) has been living with celiac disease for 4 years and creates content focusing on health equity, advocacy, and living a fulfilling gluten free life. She uses her experience as a Black woman with celiac to talk about being gluten free through an intersectional lens. Through social media, she aims to create a supportive community for folks who are navigating living gluten free through educational posts, recipes, product recommendations, restaurant reviews, travel, tips and tricks, and of course, memes.  In this casual conversation, Liz chats about her jump to social media upon her celiac disease diagnosis, and how she hopes her page can help others find community while experiencing a chronic condition. Liz also shares an exciting, nationwide project she is working on. You can follow Liz on Instagram, Tiktok, and Facebook, and soon to be Youtube! Thanks so much to Takeda for sponsoring this episode of Celiac Straight Talk. To hear more episodes of Celiac Straight Talk, head to https://www.beyondceliac.org/news-events/podcast-series/

In this minisode of Celiac Straight Talk, Beyond Celiac CEO Alice Bast speaks with Casey Walters about the challenges of having a young child with celiac disease. Alice’s personal journey as a celiac disease survivor and champion for research in this field, coupled with her prior experience of more than two decades in healthcare business development and marketing, taught her that patients need to be educated and empowered with solid information in order to make decisions about their desired health outcomes. Casey is a PR professional with experience working in the consumer technology space handling media relations, message and platform development, event management and trade show execution, product launches, content creation and development of traditional and social media relations campaigns. Her experience spans a wide variety of consumer and technology brands. To hear more episodes of Celiac Straight Talk, visit https://www.beyondceliac.org/news-events/podcast-series/.   

Amy Ratner joined Beyond Celiac in 2016 as the medical and science news analyst to provide coverage of celiac disease research news. She has extensive experience reporting on and writing about celiac disease. She was editor-in-chief, associate editor and contributing editor for 23 years at Gluten-Free Living magazine, where her work touched on all topics related to celiac disease, including lifestyle, diet, nutrition, and medical and research developments. When Amy’s daughter was diagnosed with celiac disease as a toddler 31 years ago, she was set on a path that combined her commitment to improving life for those with celiac disease with her journalism training. Tune in today to hear Amy and Social Media Coordinator Lauren Wallach discuss how far celiac disease research and access to gluten-free food has come in the last two decades! To hear more episodes of Celiac Straight Talk, visit https://www.beyondceliac.org/news-events/podcast-series/. 

In winter of 2023, Beyond Celiac welcomed Debra Silberg, MD, PhD, FACG as our new Chief Scientific Officer and Jordan Dubow, MD, as our new Chief Medical Officer. In this Town Hall, Dr. Silberg and Dr. Dubow unpack their backgrounds and what’s in store for Beyond Celiac research in 2024, as well as a Q&A segment about celiac disease. Discussions include topics such as the neurological impact of celiac disease, explanations of grant funding, and clinical trials for treatments. This event was possible thanks to our sponsor, Takeda, and the ILLUMINATE trial. Learn more at the Illuminate Study website. To hear more episodes of Celiac Straight Talk, visit https://www.beyondceliac.org/news-events/podcast-series/. 

Arnold Han, MD PhD, of Columbia University, was awarded the 2022 Beyond Celiac and SSCD Early Career Investigator Grant to investigate the role of CD8 T-cells in celiac disease. Thus far, Dr. Han’s innovative research has found more precise ways that gluten sets off damage to the intestine in those who have celiac disease, which he believes could help in the development of innovative approaches to finding a treatment. In our discussion, Han reveals what he’s discovered so far through this research and where he hopes it leads in the future. Special thanks to our friends at Crunchmaster Crackers for sponsoring this event! To hear more episodes of Celiac Straight Talk, visit https://www.beyondceliac.org/news-events/podcast-series/. 

In this episode of Celiac Straight Talk, Beyond Celiac CEO Alice Bast interviews Jackson Dunckel, CFO of AMG, an eco-friendly manufacturing company. Jackson shares his celiac story in a candid conversation, from his delayed diagnosis in 2002 to managing his health today. In particular, Jackson shares his perspective as a long-time diagnosed man managing this serious genetic autoimmune disease.

In this episode, Beyond Celiac staff recount our recent accomplishments and projects—when we aren't podcasting, you can rest assured that we are working hard to improve the lives of celiac disease patients everywhere! This episode is a recording from our in-person Community Summit event, which happened September 30, 2023 in Greenwich, Connecticut.  Listen to Celiac Straight Talk wherever you find podcasts.

In this heartfelt episode of Celiac Straight Talk, join Beyond Celiac CEO Alice Bast as she sits down with special guest Dylan Dreyer, beloved co-host of the 3rd hour of TODAY. The conversation delves into a candid exploration of Dylan's journey when her six-year-old son, Calvin, was diagnosed with celiac disease. From the initial shock of the diagnosis to the practical steps and emotional nuances of transitioning Cal to a strict gluten-free diet, this episode offers a genuine and relatable discussion about the challenges and triumphs faced by one family. Gain insights into the resilience, adaptation, and love that fuel the commitment to keeping Calvin safely gluten-free. Join us for an episode that sheds light on the realities of celiac disease and underscores the strength found in community and understanding.

This episode of Celiac Straight Talk is a dive deep into inspiring stories and advocacy for health and wellness. In this thought-provoking episode, Beyond Celiac CEO Alice Bast sits down with renowned TV personality Jenna Wolfe for a candid discussion on patient empowerment. Don't forget to like, share, and subscribe to stay updated on all things celiac disease! Get all the episodes of Celiac Straight Talk wherever you get your podcasts. 

This is a recording of the "Living Your Best Gluten-Free Life" panel from our 2023 Community Summity. It features four gluten-free influencers, Phil, Liz, Erin and Emily, discussing how they've tackled their health conditions and thrived on the gluten-free diet.  Phil is the creator behind @PhilHatesGluten, a popular TikTok and Instagram account. He uses humor to allieviate the burden of managing eosinophilic esophagitis.  Liz Purvis is a celiac disease advocate and content creator (@yeet.that.wheat on Instagram and TikTok) living with celiac disease. Her content focuses on health equity and her experience as a Black woman living with celiac. Erin Smith is the creator of Gluten-Free Globetrotter, a travel website that provides information about eating gluten-free and traveling with celiac. She's been living with celiac disease since 1981 and eating gluten-free long before it was "trendy.”  Emily Shaw is best known for her viral DIY TikTok account @emilyrayna. She has been featured in prestigious publications including The New York Times, Architectural Digest, Business of Home, The Drew Barrymore Show, and more. Something her fans may not know is that she also happens to have celiac disease.