Boston Children’s Answers: Raising Celiac

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.

Studies have largely debated the extent of the connection between Crohn's disease and celiac disease, but all conclude that Crohn's is more common in those with celiac than in the general population. Overlapping symptoms include abdominal pain, diarrhea, iron deficiency anemia, and short stature. A diagnosis of celiac disease or inflammatory bowel disease alone can be life altering and a difficult adjustment for children, adolescents, and their families. Diagnosed together, it's even more challenging. So, how can a medical team help young adults living with both conditions have a positive quality of life? How are the treatments for Crohn's different than the treatment for celiac disease with a gluten-free diet? Do Crohn's symptoms come and go, or once treated, stay away? What do researchers know about the genetics of these diseases and the likelihood of passing them on to future children? We'll discuss this and more on today's episode of Boston Children's Answers: Raising Celiac. The Boston Children's Answers: Raising Celiac is made possible by the generous support of the Global Autoimmune Institute.

There are approximately 74 million school-age children in the United States alone, thus an estimated 740,000 school children who require a gluten-free diet for celiac disease. Celiac can cause significant effects on children and their families, as well as on the school they attend. We know that many children and teens do not follow a strict gluten-free diet and most often consume gluten-containing foods during meals with peers. Kids also risk being exposed to gluten at lunch time, during class celebrations and cross-contact with gluten-containing materials like Playdoh, paper maché, art supplies, science experiments, and cooking classes. So, how do parents know which type of plan their child should have to accommodate their needs at school? What do they do if the school is unwilling to set up a 504 plan? Where do they turn to for help? What should a child with celiac disease expect in the school environment? We'll discuss this and more on this episode of Boston Children's Answers: Raising Celiac. The Boston Children's Answers: Raising Celiac Podcast is made possible by the generous support of the Global Autoimmune Institute.

Hashimoto disease is an autoimmune disorder that can cause hypothyroidism, or underactive thyroid. It's closely linked to celiac disease. With Hashimoto, the immune system attacks the thyroid gland, with a large number of white blood cells building up and causing inflammation in the thyroid. This damages the thyroid and prevents it from making enough thyroid hormone. The hormone is important because it helps control how your body grows, uses energy, and how many of your organs function. The prevalence of autoimmune thyroid disease in patients with celiac disease is four times greater than that in the general population. This is likely due to sharing some of the same genes. But why do some patients develop a second autoimmune disease many years after being on a strict gluten-free diet? Does having celiac disease trigger the thyroid condition? Does the gluten-free diet help with treating thyroid disease or is medication always needed? We'll discuss this and more on today's episode of Raising Celiac. The Raising Celiac Podcast is made possible by the generous support of the Global Autoimmune Institute.

Living with a chronic disease is extremely challenging, especially when every single bite of food every single day of your life requires thought and care. Hypervigilance in relation to celiac disease is when someone is severely afraid of gluten exposure and may go beyond the necessary measures to prevent contact with gluten. It can lead to extreme anxiety, depression, and social isolation. Sometimes the patient with celiac disease exhibits signs of hypervigilance, but for a child, their parent may act hyper vigilantly in how they manage their child's celiac disease. It can be difficult to find the right balance of avoiding gluten while still living a full life. So, how does a child with celiac disease navigate the complexities of being a teenager, going to college, dating, and progressing through life in a way that feels normal? How should parents approach the gluten-free diet with their child in a way that doesn't lead to hypervigilance? What do researchers know about the impact of chronic disease on quality of life and how can clinicians help their patients improve it? We'll discuss this and more on today's episode of Raising Celiac. The Raising Celiac Podcast is made possible by the generous support of the Global Autoimmune Institute.

Dermatitis herpetiformis in an intensely itchy skin condition caused by a reaction to gluten ingestion. Most patients with dermatitis herpetiformis (DH) also have celiac disease. Though, oddly enough, DH patients sometimes have a normal intestinal biopsy and normal celiac blood tests but will still respond to a gluten-free diet. About 15% of people with celiac disease also have DH, though this population tends to not experience the more classic gastrointestinal symptoms like diarrhea, vomiting, and bloating. So, how does a patient with celiac disease and DH manage the gluten-free diet at home, at school, and on the go? Does touching gluten cause their rash to come back? If they don't have GI symptoms, how strict of a gluten-free diet do they need to be on? Does it make a difference if they have a small bowel biopsy or not? We'll discuss this and more on today's episode of Raising Celiac. The Raising Celiac Podcast is made possible by the generous support of the Global Autoimmune Institute.

There is a well documented increased risk of experiencing headaches with celiac disease. One study found the prevalence of headaches in adults with celiac disease was 26 percent and in children with celiac 18 percent. The good news is that the gluten-free diet appears to help the headaches with up to 75 percent of adult patients and 70 percent of children with celiac reporting their headaches improved when they followed the gluten-free diet. But, how can eating gluten cause severe headaches? Once diagnosed with celiac and on a gluten-free diet, will a single gluten exposure lead to a headache attack? What other neurological issues are related to celiac disease and are they reversible? We'll discuss this and more on today's episode of Raising Celiac. The Raising Celiac Podcast is made possible by the generous support of the Global Autoimmune Institute.

The association between eosinophilic esophagitis (EOE) and celiac disease is still controversial and its prevalence is highly variable. Like celiac disease, one of the treatments for EOE is the elimination of specific food groups from the diet. But unlike celiac disease where the known trigger is gluten, with EOE, it takes some deeper investigation. It's fair to say it's complicated...So, how does a patient with celiac disease and EOE manage the dietary considerations of both diseases? How do they handle the anxiety at mealtimes? Does a gluten-free diet help with the EOE symptoms? We'll discuss this and more with Dr. Erin Syverson and dietitian Tara McCarthy on this episode of Raising Celiac. The Raising Celiac podcast is made possible by the generous support of the Global Autoimmune Institute.

There is a well-established link between type 1 diabetes and celiac disease that was first discovered over 60 years ago. The estimated prevalence of celiac disease in patients with type 1 diabetes is approximately 8%, compared to about 1% in the general population. Due to the significantly higher prevalence of celiac disease in diabetes' patients, many physicians recommend getting screened for celiac disease after a diagnosis of type 1 diabetes, and vice versa. But once diagnosed, how does a family with a child with a dual diagnosis of celiac disease and type 1 diabetes manage the dietary considerations of both conditions? Does going on a strict gluten-free diet help with managing diabetes? How do these patients manage their nutritional needs when eating outside of the home like at school or in a restaurant? We'll discuss this and more on today's episode of Raising Celiac. The Raising Celiac Podcast is made possible by the generous support of the Global Autoimmune Institute. References: - Cohn A, Sofia AM, Kupfer SS. Type 1 diabetes and celiac disease: clinical overlap and new insights into disease pathogenesis. Curr Diab Rep. 2014 Aug;14(8):517. doi: 10.1007/s11892-014-0517-x. PMID: 24952108; PMCID: PMC4156157. - Bakker SF, Pouwer F, Tushuizen ME, Hoogma RP, Mulder CJ, et al. Compromised quality of life in patients with both Type 1 diabetes mellitus and coeliac disease. Diabet Med. 2013;30:835–839.

Like celiac disease, ulcerative colitis is a chronic autoimmune disease where the body mistakenly attacks itself. Similarly to celiac, it may be triggered by a combination of genetic and environmental factors. Recent research links celiac and inflammatory bowel diseases like ulcerative colitis, but which comes first? Does one cause the other? If a patient tests positive for celiac disease should they be automatically be screened for inflammatory bowel disease at the time of diagnosis? We'll discuss this and more with Dr. Maria Ines Pinto-Sanchez on this episode of Raising Celiac. The Raising Celiac Podcast is made possible by the generous support of the Global Autoimmune Institute.

Celiac disease is a genetically-mediated autoimmune disease that can affect any system of the body. The only treatment is a lifelong gluten-free diet. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing important nutrients from food and cause a variety of symptoms like abdominal pain, nausea, diarrhea, vomiting, fatigue, weight loss, mouth ulcers, and growth issues to name a few. An estimated 1 percent of people in North America are affected by this autoimmune disease — typically more girls than boys — and many are undiagnosed. And, celiac is also closely related to many other chronic diseases including type 1 diabetes and thyroid disease. This season on Raising Celiac, we're going to explore why…we'll talk to experts across the United States and around the world to discuss why celiac disease is so complicated and how better understanding it may be the key to learning more about other autoimmune conditions. Today we talk about the history of celiac disease with Dr. Dascha Weir, the Clinical Director of the Celiac Disease Program at Boston Children's Hospital. The Raising Celiac Podcast is made possible by the generous support of the Global Autoimmune Institute.

Raising Celiac is a podcast from the Celiac Disease Program at Boston Children's Hospital dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. Hosted by Education Director Vanessa Weisbrod, each month the podcast will feature experts from across the United States and around the world to discuss the complexities of this chronic genetic condition and how it intertwines with so many other autoimmune diseases. Every episode of the Raising Celiac podcast is accredited by the Boston Children's Hospital's Continuing Education Department for 0.5 AMA PRA Category 1 Credits ™ for physicians, 0.5 contact hours for nurses, 0.5 ACE CE continuing education credits for social workers, and 0.5 CEUs for Registered Dietitians. To claim credits, please listen to each episode and visit: https://dme.childrenshospital.org/raisingceliac/