The Gluten-Free Guide

Parents are really good at asking doctors questions about their kid's health, but do we always let our kids speak up and ask what's on their mind? Today we  are letting them do just that! We have a very special episode that features some of our loyal podcast listeners…all adorable kids who have some burning questions for doctors about celiac disease and the gluten-free diet. 

And of course, we have two fabulous physicians joining us to answer these questions, Dr. Danny Mallon, the director of the Celiac Disease Program at Cincinnati Children’s Hospital and Dr. Ritu Verma, the director of the Celiac Disease Center at the University of Chicago.

Our podcasts about research are often are the most popular, so hopefully today’s will also deliver. Today’s topic explores another often-misunderstood condition Postural Tachycardia Syndrome or (POTS) as it often called - and its possible connection to celiac disease. This is a condition that presents with a variety of symptoms that can be difficult to diagnose – like chronic fatigue, lightheadedness, fainting, an uncomfortable, rapid increase in heartbeat when standing up, and a range of GI symptoms. POTS has even been referred to as the “invisible disease.” Today we want to discuss the gastrointestinal symptoms associated with this condition and its possible link with celiac disease. 

We have a team of fantastic experts with us here in the studio to help us better understand POTS and the studies linking it to celiac disease. We have Dr. Jeffrey Moak, the director of electrophysiology and pacing in the department of cardiology at Children’s National Hospital and Dr. Jocelyn Silvester, the director of research for the Celiac Program at Boston Children’s Hospital.

Studies referred to during the episode

https://jnnp.bmj.com/content/jnnp/76/4/579.full.pdf

https://pubmed.ncbi.nlm.nih.gov/25554987/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6314490/

https://www.ahajournals.org/doi/10.1161/JAHA.119.013602

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

Today we are talking about the recent Celiac Disease Symposium at the Columbia Celiac Disease Center. This biennial event hosts two forums, one scientific and one clinical, and attracts, researchers, physicians, patients, parents, and nutritionists from around the world. It’s an amazing time to come together to learn, see old friends and make some new ones. Unfortunately, this year because of the Corona virus, the conference had a last-minute shift and only the speakers were able to gather in New York City. Thankfully the organizers (Dr. Peter Green and his team) were able to set up a web-based service so that the attendees could tune in via live stream and still partake in the incredible sharing of knowledge. 

Since we know many of our listeners were unable to attend, we are going to do a recap of the conference today on the podcast and talk about some of the big topics with one of our favorite guests, Dr. Jocelyn Silvester from Boston Children’s Hospital.

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

Todays’ topic is about the recent “Doggie Bag” study published in the journal Gastroenterology, that suggests that a truly “gluten-free diet may be more aspirational than achievable.” We talk a lot about strict gluten-free diets on the podcast, but this study points out that even at our strictest, we may still be exposed to gluten.  

To help us better understand why this is and what it means for the future of patients with celiac disease, we have Dr. Jocelyn Silvester from Boston Children’s Hospital in the studio. Dr. Silvester is the lead researcher on the study and one of our favorite podcast guests!

Education is really important when it comes to living with a chronic disease. With celiac disease, patients and their families have to keep up reading food labels, new food products, changing food products, drug development, and research. Medical providers have to stay current on new testing methods, guidelines for managing the disease, and all of the food stuff too in order to help patients manage the gluten-free diet. It’s a lot! 

On this episode of the podcast, we're sitting down with Dr. Alan Leichtner, the Chief Medical Education Officer at Boston Children’s Hospital to discuss celiac disease education. He’s going to talk to us about education of patients and families as well as education of medical professionals…and he’s going to answer some of our listener questions about what to do if you think your doctor needs a little beefing up on celiac disease! 

Links we talk about on the episode: 

NASPGHAN Clinical Guide: https://naspghan.org/professional-resources/medical-professional-resources/celiac-disease/  Evidence-Informed Recommendations for the Management of Celiac Disease in Children: https://pediatrics.aappublications.org/content/138/3/e20153147Celiac Disease Foundation: https://celiac.org/about-celiac-disease/what-is-celiac-disease/

Food bullying. It can range from teasing others at school or online in social media groups, to kids throwing bread at children with celiac disease. In many cases it’s parents that are doing the bullying...But how do you address this problem? As the issue has come up numerous times in the past few weeks in our Celiac Clinic at Children's National Hospital, we wanted to address it on the podcast. Joining Vanessa in the studio are two of the CNMC community education specialists, Kate Raber and Joyana McMahon. 

Links in Episode: 

The Princess and the Peanut Allergy: https://www.amazon.com/Princess-Peanut-Allergy-Wendy-McClure/dp/0807566233Can I Have Some Cake Too? https://www.amazon.com/Have-Story-about-Allergies-Friendship/dp/1935914286What Treat Can Ruben Eat? https://www.amazon.com/What-Treat-Can-Ruben-Eat/dp/1481753762Pediatrics study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3529950/

Today’s topic is an always popular one. We all love to travel, it’s one of the best parts of life. But doing so is a bit more complicated while following a gluten-free lifestyle. Today we have an expert to share some of her favorite tips for gluten-free travel. Leslie Bari is the founder of Gluten Free Finds PA and the Constitutional Walking Tour. She loves to find and share her gluten-free finds and travel tips with her readers and has built quite a community doing so. We’re so happy to have her join us today to share some of her travel wisdom!

Most of us use social media in one way or another to connect with family, friends, and other communities that enrich our lives. But sometimes social media groups present information about medical conditions that is just wrong. It's frightening that some people might take online posts as fact instead of talking to their doctor or other health care professional.  To help us talk about these issues we have a wonderful group here in the studio…Our Children's National Community Education Specialist Joyana McMahon….and one of our amazing board members Maureen Basye, who is a mom to a child with celiac disease and the founder of Celiac Cruise. 

Thank you to the Walter and Jean Boek Global Autoimmune Institute for their ongoing support to make this podcast possible.

Do we have a new drug for celiac disease? Results of a new phase 2 clinical trial using technology developed at Northwestern university showed that it is possible to induce immune tolerance to gluten in individuals with celiac disease. The researchers suggest that their findings may pave the way for treated celiac patients to eventually tolerate gluten in their diet. As we are writing these these words we can hear our listener around the world cheering for joy that there may be a magic pill to take that will allow them to eat gluten. But is that really the case? 

To help us better understand what this new drug is and how it might help patients with celiac disease, we have Dr. Jocelyn Silvester from Boston Children’s Hospital in the studio. Dr. Silvester is a leading celiac disease research in the United States and Canada and one of our favorite podcast guests! 

Thank you to the Walter and Jean Boek Global Autoimmune Institute for their ongoing support to make this podcast possible.

Today’s topic is going to follow up on the influx of research and proclamations about the future of celiac disease. How do we as patients learn how to process the relevance of research in our own lives? How do we know what is important for us? How do we understand the significance of research and how it could potentially affect us?

To discuss this topic with us, we have Dr. Ritu Verma from the University of Chicago Celiac Disease Center. Dr. Verma is a leading expert in celiac disease and is passionate about integrating current research and therapies in clinical care to provide the most innovative treatments for patients. Dr. Verma sat down for this conversation with one of our podcast co-hosts Ellen Wilcox at the recent DC Gluten-Free Education Day. 

Thank you to the Walter and Jean Boek Global Autoimmune Institute for their ongoing support to make this podcast possible.