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 o ..read more

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 nationa ..read more

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 qual ..read more

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 ..read more

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 d ..read more

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 suppli ..read more

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 ..read more

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 ..read more

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 cons ..read more

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 ..read more