Boston Children’s Answers: Raising Celiac

Can kissing someone who just ate gluten make you sick if you have celiac disease? It's one of the most frequently asked—and least understood—questions in the celiac community. In this episode of Raising Celiac, we speak with Dr. Anne Lee from the Celiac Disease Center at Columbia University about a groundbreaking new study that directly measured gluten transfer through kissing.

We’ll explore how the study was designed, what it found (spoiler: drinking water helps!), and what these findings mean for real-life relationships and risk. You'll also meet Emily, a newly engaged woman with celiac disease, whose personal story of love and science brings the data to life.

Thank you to the Global Autoimmune Institute and Celiac Disease Foundation for making this podcast possible.

Could science reshape wheat to make it safer—and possibly prevent celiac disease? In this episode of Raising Celiac, we talk with Maria Rottersman, a doctoral researcher at UC Davis, about groundbreaking work to remove the most harmful gluten proteins from wheat using gene deletions. We explore how this innovation could reduce risk for millions, what it means for breadmaking, and what comes next. Plus, we follow Markus, a teen at genetic risk for celiac, whose story brings hope to families everywhere.

Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible.

Accredited for CME/CE credit through Boston Children’s Hospital.

When 7-year-old Eliana returns to school after her celiac disease diagnosis, she faces more than a new diet—she faces isolation and a lack of support in all elements of school life. In this episode of Raising Celiac, Dr. Hilary Jericho from Stanford discusses new research on the school experiences of children with celiac disease, highlighting the urgent need for proper accommodations that are documented in a 504 plan.

Thank you to the Global Autoimmune Institute for their generous support of the Raising Celiac podcast.

In this episode of Raising Celiac, we explore the state of celiac disease in Latin America with renowned expert Dr. Julio Bai. From Argentina’s groundbreaking gluten-free food law to the barriers in diagnosis and treatment across the region, we dive into the realities patients and providers face. Hear Sofia’s journey of navigating life with celiac disease and learn how advocacy, research, and international collaboration are shaping the future.

Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for their support to make this podcast possible.

In this episode of Raising Celiac, we dive into the evolving science of celiac disease diagnosis with Dr. Jason Tye-Din, a leading gastroenterologist and researcher from Melbourne, Australia. Join us as we explore the role of interleukin-2 (IL-2) as a groundbreaking biomarker, offering a potential path to less invasive and more accurate diagnostic methods. We’ll also hear Jonah’s story—a decade-long journey of living gluten-free without a formal diagnosis—and discuss how innovations like IL-2 testing could transform the diagnostic process for people like him.

Tune in for an inspiring and educational conversation about the future of celiac disease diagnosis, patient empowerment, and hope for those navigating this challenging condition.

Special thanks to the Global Autoimmune Institute for supporting this podcast. Don't forget to like, subscribe, and leave a review!

In this episode of Raising Celiac, we explore Emily’s journey of being diagnosed with both type 1 diabetes and celiac disease. Despite the absence of early digestive symptoms, subtle signs led her family to seek further screening. We’ll discuss the importance of regular autoimmune disease screening in children with type 1 diabetes and how early detection of celiac disease can improve outcomes. Our guest, Dr. Danny Mallon from Cincinnati Children's Hospital, joins us to share insights on managing multiple autoimmune conditions and the potential for new screening methods that could reduce the time to diagnosis and the need for invasive procedures.

This episode of the Raising Celiac Podcast looks at best practices in biopsies for celiac disease. Historically, confirmatory biopsies were obtained from the distal duodenum only, rather than the duodenal bulb. However, researchers have observed that some patients with celiac disease have histopathologic mucosal changes limited to the duodenal bulb only. This subtype, called isolated bulb celiac disease, has been estimated to occur in up to 12% of individuals diagnosed with celiac. Thus, to improve the sensitivity of biopsies in diagnosis, updated pediatric and adult guidelines now recommend obtaining both duodenal bulb and distal duodenum biopsies.

But how can delayed diagnosis be prevented in the future? Do endoscopists need to separate the biopsies into separate containers for pathology review? Does isolated blub celiac disease relate at all to the levels of ttg antibodies in the blood? We'll discuss this and more on this episode of Raising Celiac.

Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for their support to make this podcast possible.

References:

Behl S, et al. The characteristics of isolated bulb celiac disease in children. Journal of Pediatric Gastroenterology and Nutrition. 2023;77:79.

Advocacy efforts can lead to the development of legislation and regulations that protect the rights and well-being of people with celiac disease. This includes advocating for accommodations in schools, workplaces, and public spaces to ensure a safe and inclusive environment for those with celiac disease. Advocacy can also greatly impact research and disease understanding when it leads to increased funding for scientists. But how can patients and doctors be involved in advocacy efforts in a productive way? Should everyone start calling their members of congress, or are there coordinated national efforts to join?

We’ll discuss this and more on this episode of Raising Celiac.

Thank you to the Global Autoimmune Institute for their support to make this podcast possible.

CME Credits: dme.childrenshospital.org/raisingceliac

Advocacy Website: https://iadvocate.celiac.org

Food insecurity is a massive problem in the celiac disease community. Currently there is no treatment for celiac disease except for the gluten-free diet. Without access to gluten-free food, there is no treating this autoimmune disease. A recent study from Boston Children’s Hospital found that 24% of pediatric celiac patients experienced general food insecurity during the COVID-19 pandemic and that when asked specifically about gluten-free food, 27% of the patients screened positive for food insecurity. Another study found that one in six patients with celiac disease are food insecure.

So, how can medical providers support patients with celiac disease who can’t afford gluten-free food? What are the best practices for clinic-based screening? What resources are available to actually help patients if they screen positive?

We’ll discuss this and more on this episode of Raising Celiac.

Thank you to the Global Autoimmune Institute for their generous support to make this podcast possible.

There are a number of drugs in clinical trials for celiac disease. Some of them are designed to help patients with ongoing symptoms of celiac disease. Others will protect against small amounts of gluten cross contact. And, one could allow individuals with celiac to eat a normal gluten-containing diet. But, how far away are these drugs from being approved by the FDA? Will they be available to all patients with celiac disease? Will you need biopsy confirmed celiac to take the drugs? How can patients join these clinical trials to help researchers learn about how well the drugs might work? We'll discuss this and more with Dr. Jocelyn Silvester, Director of Research from the Boston Children's Hospital Celiac Disease Program and hear from a patient who recently participated in a trial.

Thank you to the Global Autoimmune Institute for their generous support to make this podcast possible.