Boston Children’s Answers: Raising Celiac

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.