Celiac Straight Talk

On this episode of Celiac Straight Talk, Celiac Cruise founder Maureen Basye sat down to chat with Social Media Coordinator Lauren Wallach and Associate Director of Communications Bailey Arman about the mission of Celiac Cruise and what it's like to vacation in a 100% gluten-free environment.  We're so grateful to Celiac Cruise for their support of the gluten-free community, and their passion for creating safe spaces for those with celiac disease and other gluten-related disorders to be able to travel without fear. To learn more about Celiac Cruise, their eight cruises remaining in 2025 and the 13 scheduled for 2026, head to celiaccruise.com/ !

In our new episode of Celiac Straight Talk, we discussed the future of celiac research through Beyond Celiac Investments! We spoke with Eric White, Director of Business Development and Strategic Alliances at Beyond Celiac. We unpacked the concept of venture philanthropy, and how exactly BCI is making its mark on the future of celiac research.  Eric is a Chartered Alternative Investment Analyst with more than 18 years of experience in institutional investing, responsible for investment decisions totaling more than $2.5 billion. He began working with Beyond Celiac in 2020, designing Beyond Celiac Investments (BCI), a venture philanthropy investment program to accelerate the development of treatments and a cure for celiac disease by leveraging the speed and scale of venture capital and capital markets. In February 2024, Eric stewarded the successful launch of BCI with an initial funding of $2 million and is responsible for the program's ongoing relational and operational management.  Learn more about Beyond Celiac Investments at beyondceliac.org/beyond-celiac-investments/. If you'd like to learn more, support BCI directly, or get involved, please send an email to investments@beyondceliac.org. Find all episodes of Celiac Straight Talk at beyondceliac.org/news-events/podcast-series/.

In this episode of Celiac Straight Talk, we chatted with Lauren of @eat.glutenfreewithme! Lauren is a passionate health and wellness creator focused on gluten-free living and autoimmune health. Living with Celiac disease, IBS, and Crohn's, she has transformed her personal journey into a mission to inspire and empower others with autoimmune conditions to take control of their health and thrive. We discussed our love-hate relationship with the gluten-free diet, her journey to creating content about living with autoimmune conditions, and what it's like living somewhere where the gluten-free diet is a fad. Follow Lauren's story and find her practical tips on Instagram (@eat.glutenfreewithme) and TikTok (@eatglutenfreewithme). Find all episodes of Celiac Straight Talk at beyondceliac.org/news-events/podcast-series/.

Lauren chatted with two of our amazing Reach Beyond Celiac Ambassadors Rochelle and Paige about their experiences as parents of young children with celiac sending their kids back to school. This conversation was fun, informative, and enlightening, as well as supportive—if you're looking for tips for talking with your child's teachers, or just to listen to people who understand your experience, this is the episode for you!  Find this episode and all our episodes of Celiac Straight Talk at https://www.beyondceliac.org/news-events/podcast-series/. Thanks again to Paige and Rochelle for being on the podcast.  

Our social media coordinator Lauren chats with two of our AMAZING Reach Beyond Celiac Ambassadors about their experiences with summer camp. Alyssa and Daniel share their insights about attending summer camp as a person with celiac in both camper and counselor roles. They discuss the pros and cons of bringing your own food, non-GI symptoms flaring up at camp, and how meaningful camp friendships can be.  To hear more episodes of Celiac Straight Talk, head to https://www.beyondceliac.org/news-events/podcast-series/.

Many with celiac disease often report feeling isolated, awkward, and disheartened as they navigate the world on a gluten-free diet. But the future is bright, and there are tools you can use to maneuver the social landscape and cope with the burden of a chronic illness. In this Town Hall celebrating both Celiac Awareness Month and Mental Health Awareness Month, Dr. Anava Wren discusses her work on the social and psychological impacts of celiac disease, and shares her top tips for combatting that isolation. Dr. Wren is a pediatric celiac psychologist and Clinical Associate Professor in the Division of Pediatric Gastroenterology at Stanford University Medical Center. She is also the Director of the GI Psychosocial Services & IBD/Celiac Psychological Health Programs. She has been a leader in Stanford Medicine Children's Health Center for IBD and Celiac Disease since it was founded in 2020. This Town Hall is possible thanks to our sponsor, Crunchmaster. Crunchmaster crackers are made from simple, wholesome ingredients, and are certified gluten-free. Thank you Crunchmaster! To hear more episodes of Celiac Straight Talk, head to https://www.beyondceliac.org/news-events/podcast-series/.

Beyond Celiac spoke with Australian researcher Dr. Jason Tye-Din about a few of the controversies in celiac disease. In this Town Hall, moderated by Director of Scientific Affairs Amy Ratner and Director of Research and Patient Engagement Kate Avery, MPH, Dr. Tye-Din discusses the safety of eating oats, a potential blood test that doesn't require the gluten challenge, and monitoring adherence to the gluten-free diet with GIP tests. To hear more episodes of Celiac Straight Talk, head to https://www.beyondceliac.org/news-events/podcast-series/.

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.

In this episode, we sit down with Juanita Belton, PA-C, MPH, physician assistant in gastroenterology and Director of Patient Empowerment at Color of Crohn's & Chronic Illness (COCCI). COCCI was created to improve the quality of life for BIPOC who are affected by IBD, digestive disorders, and associated chronic illnesses through community, research, education, and advocacy. Juanita gives tips for talking with your doctor about your unique health needs.    Learn more about Celiac Straight Talk at https://www.beyondceliac.org/news-events/podcast-series/ 

Ambassadors Hayden and Alyssa join podcast coordinator Leah Popovic as they discuss what it's like to experience an athletic life style with celiac disease.  To hear more episodes of Celiac Straight Talk, visit https://www.beyondceliac.org/news-events/podcast-series/

We sat down with Arturo Chacón Cruz to learn just how he manages to stay gluten-free while traveling all over the world to sing opera, as well as his advice for convincing others that, while the gluten-free diet can be annoying, your health is worth it. To hear more episodes of Celiac Straight Talk, visit https://www.beyondceliac.org/news-events/podcast-series/

Dr. Hilary Jericho became a part of the Stanford University team at the beginning of this year, working for the newly developed celiac disease program at the Lucile Packard Children's Hospital. Learn about how Dr. Jericho's research in the psychosocial effects of celiac disease has made an impact on the Bay area. To hear more episodes of Celiac Straight Talk, visit https://www.beyondceliac.org/news-events/podcast-series/

Looking for gluten free restaurants in Lehigh Valley, Pennsylvania? Look no further! Meet Jeff Val, the creator of Gluten Free Lehigh Valley—a platform where the gluten-free community can connect with peers, doctors and more. This project is pioneering an effort to make celiac disease and gluten intolerance better understood not only in Lehigh Valley, but in communities across the country. 

By sharing her DIY interior design creations on TikTok, Emily Shaw became a social media sensation practically overnight. Shaw, who renovates spaces and repurposes budget household items, has nearly six million followers on TikTok alone, and has dedicated her career to this niche craft. Something her fans may not know is that she happens to have celiac disease, an autoimmune disease.    As a true innovator, she's learned to nimbly navigate her newfound fame while managing celiac disease. Get to know how Shaw persisted despite her symptoms and what the future holds for her growing digital platform.    Follow Emily on TikTok or Insta at ​​@emilyrayna

In March, Beyond Celiac teamed up with Dr. Mark Davis, the Director of the Stanford Institute for Immunity, for a town hall session on t-cell dynamics in autoimmunity. Join us in learning about the importance of human studies and how the development mitochondrial physiology can help those suffering from non-GI symptoms of celiac disease.

Looking for an authentic gluten-free Italian meal? Teona Khaindrava will happily provide at Senza Gluten, located in the heart of Greenwich Village, New York City. Khaindrava, who opened the business in 2014, trains her hard working staff to prepare gluten-free pasta, cocktails, desserts and more while adhering to traditional Italian recipes and techniques. Learn how Senza Gluten has heightened the dining experience for people with celiac disease, as well as their mission to spread awareness.

Kayla King has been living with celiac disease for over 17 years, “centering her life” around food and maintaining a safe, healthy diet. After receiving a business degree and becoming a nutrition coach, King recently launched MyMeal, an app helping people with restricted diets find restaurants which cater to their needs. Learn about how King is using online advocacy to change the way people with celiac disease, chronic illnesses and allergies can safely go out to eat.

Our webinar from January 19, 2023 discusses some of the biggest celiac disease news and research from the past year. Learn about what is to come with these discoveries and how patients come upon a proper diagnosis, as well as celebrating the organization's 20 years of searching for life-changing services.

Join Podcast Coordinator Leah Popovic as she speaks to well renowned actress and producer Sam Doumit about her experience living with a wheat allergy. Doumit, who starred alongside Rob Schnieder in the film “The Hot Chick,” provides insight to working in Hollywood with dietary restrictions, as well as how her attitude and self-advocacy has played a role in her health today.

In this episode, we chat with two renowned gastroenterologists, Dr, Benjamin Lebwohl and Dr. Ritu Verma, about the role genetic tests and biopsies play in diagnosing celiac disease. What can these tests tell us about a patient's health? Are they necessary to diagnose celiac disease? The conversation is followed by a community Q&A.    Dr. Lebwohl and Dr. Verma are members of The Society for the Study of Celiac Disease (SSCD). The SSCD is a professional organization of physicians, nurses, dietitians, and allied health professionals in the United States, Canada, and Mexico who specialize in the treatment of celiac disease and other gluten-related disorders.

In this episode, we chatted with Colleen and Libby, two sisters who were diagnosed with celiac disease at the same time, shortly after their older brother was diagnosed. Their story emphasizes the importance of getting relatives tested, regardless of symptoms, and sheds light on what it's like to grow up with celiac disease today.    This episode is sponsored by imaware. Use our code to get a discount on at-home testing kits!

World-renowned celiac disease expert Dr. Stefano Guandalini, MD, sat down with us to answer your questions about celiac disease and the gluten-free diet. In this episode, the audience-submitted questions focused on conditions that are commonly seen alongside celiac disease. Dr. Guandalini is also the medical advisor for the sponsor of this Town Hall, imaware™.

We facilitated a community Q&A with Amelie Therrien, MD, gastroenterologist at Beth Israel Deaconess Medical Center, about potential non-dietary treatments for celiac disease. She answers your questions about how some of these potential treatments work, the role of the gluten challenge in clinical trials, and whether treatments may work for other autoimmune conditions, too. This event was sponsored by the Solutions for Celiac study on latiglutenase. 

Beyond Celiac ambassador Noah Lustbader is one of the youngest scientists working hands-on towards a cure for celiac disease. As a junior in college at Vanderbilt University, Noah is already pioneering a multi-centered project with Vanderbilt's Clinic Director Dr. Dawn Adams, including centers such as Mayo Clinic and Harvard. In this episode, he talks about his experience as an undergraduate research assistant alongside Dr. Arnold Han at Columbia University's Irving Medical Center, studying t-cells and possible therapeutic strategies for celiac disease in a professional laboratory.

Healthcare systems across the globe often fall short when caring for celiac disease patients. Himanshi Pareek shares how misinformation from her doctors in India worsened her condition, leading to her own scientific discoveries which countered the medical advice she received.

Roby Sobieski is an actor, model and magician whose appearance on “The Bachelorette” has lended him lots of social media popularity. His aunt, Alice Bast, founder and CEO of Beyond Celiac, connects him to our organization, where Roby has advocated for greater celiac disease awareness, and even volunteered at our 2020 virtual event entitled “An Evening Beyond Celiac.” In this episode, Podcast Coordinator Leah Popovic learns more about Roby's connections to celiac disease, as well as his experience with Bachelor Nation and what his future may hold. 

You might recognize Sarah Joy Brown from her various on-screen acting appearances, such as General Hospital and Big Momma's House. Get to know more about her life behind the scenes as an actress with celiac disease, as she speaks with Podcast Coordinator Leah Popovic on the importance of visibility and advocacy, especially in the acting industry.

Hear our Reach Beyond Celiac ambassadors share advice on how to safely enjoy gluten-free foods in foreign countries.

Podcast creator, writer, social media figure, father with celiac disease – all of the above. Ben Hampton has made a name for himself in the celiac disease community, bringing awareness via “A Gluten Free Podcast” and his Instagram page, where he coined the name “A Gluten Free Family.” Listen as Ben talks about living gluten-free in Australia as a father of two with a newfound passion of celiac disease advocacy, especially for male identifying celiac disease patients. 

In this episode, our ambassadors with Reach Beyond Celiac discuss how their symptoms have progressed or changed before, during and after their celiac disease diagnosis. 

Despite their vastly different diagnosis journeys, interns Leah Popovic and Charlotte Cebula share common threads as college-aged members of the celiac disease community. In this episode, get to know two of our summer interns as they connect their work with Beyond Celiac to their own personal experiences with celiac disease.

Get to know how our Reach Beyond Celiac ambassadors have discovered helpful tips to live a gluten-free life.

Catalin Varela never allowed her celiac disease health crisis to hinder her ambitions. In this episode, Leah Popovic of Beyond Celiac speaks to Varela about her intense diagnosis journey which ignited a passion for nutrition, exploration and education. Now pioneering her own business based out of Florence, “The Celiac in Italy'' has lots to share with the community and beyond. Visit https://www.catalinvarela.com/ to view Catalin's business.

Shanese Shields, also known as “DramaKueen,” across the internet, is well-known for her time on A&E's “60 Days In,” as a voluntary inmate of an Alabama correctional facility. Leah Popovic of Beyond Celiac moderates this episode, where we learn more about her experiences as a woman with celiac disease and how her time on television has drawn attention to the unjust treatment of incarcerated individuals with autoimmune diseases and dietary restrictions. Visit youtube.com/c/DramaKueenVlog to watch some of Shanese's content.

Kate Avery and Claire Baker of Beyond Celiac are joined by Doug Jacobstein, M.D. and Dan Leffler, M.D. for this town hall discussion, focusing on how patients are a pivotal aspect of developments in the celiac research community. Both panelists speak about their experiences with clinical trials and how new research can emerge with the help of patient participation.

In 2021, Beyond Celiac held a virtual mini conference entitled “Hidden in Plain Sight” to explore the numerous experiences faced by celiac patients, especially those who struggle with misdiagnosis or a missed diagnosis.  This episode (a recording from the mini-conference) centers on the invasive testing procedures endured by celiac patients, as well as the importance of accurate testing and scientific development. Along with Amy Ratner of Beyond Celiac, Hilary Jericho, MD and Isabel Hujoel, MD, share their professional opinions and ambitions. 

In 2021, Beyond Celiac held a virtual mini conference entitled “Hidden in Plain Sight,” which explored the numerous experiences faced by celiac patients as they struggled to get diagnosed. This episode emphasizes the many neurological symptoms that often go overlooked as indicators of celiac disease. Panelists Gabrielle Zimmerman, Iain Croall (Ph.D.) and Nigel Hoggard (M.D.) expand upon their experiences and research in this focus area.

World-renowned pediatrician and celiac disease expert Dr. Stefano Guandalini sat down with us to answer your questions about celiac disease and the gluten-free diet. Even the most informed patients can learn something new from this episode!

In this episode, our male ambassadors discuss some of the unique challenges men face in getting diagnosed and living with celiac disease, as well as the stigma friends and family may have about the gluten-free diet.    Note: any use of the term "cross-contamination" should actually be "cross-contact."

“That advisory board concluded that race, ethnicity, age and gender can all cause delays in diagnosis, or, worse than that, a failure to diagnose at all.” Amy Ratner of Beyond Celiac, Pooja Mehta, MD, of Children's Hospital Colorado and patient representative Jocelyn Langevine discuss disparities in diagnosing celiac disease; how they happen, why they happen, and what we can do to get more people diagnosed.

Amy Ratner and Kate Avery, MPH, of the Beyond Celiac Science Team discuss the most exciting celiac disease research published in the past year and how clinical trials for celiac disease treatments are progressing.      Note: The term "cross-contamination" used at timestamps 38:34 and 38:45 should be "cross-contact."

When it comes to getting a new diagnosis, friends can be your greatest ally or a crushing loss if they don't understand your new needs. Our Reach Beyond Celiac Ambassadors discuss the ins and outs of how celiac disease can affect a friendship, old or new.    Note: at timestamps 17:14 and 18:33, the term “cross-contamination” should be “cross-contact.”