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Celiac disease linked to psychosocial distress

gluten free cupcakes

A recent study found elevated rates of psychosocial distress among children with celiac disease compared to the general population.

Shayna Coburn, Ph.D., assistant professor and psychologist at Children’s National Hospital, is the lead author of a recent article on the first study to report mental health disorders (MHD) in North American children with celiac disease (CeD). The study found elevated rates of psychosocial distress among the children compared to the general population.

The study is based on electronic surveys of patients’ MHD history, psychological symptoms and experiences with the gluten-free diet (GFD) as well as follow-up visits to the Multidisciplinary Celiac Disease Clinic at Children’s National between spring 2017 and spring 2018. The survey participants included 73 parents of children ages 3 to 18 attending the clinic. The researchers calculated rates of MHD in the children and compared them to National Institute of Mental Health population-level data.

Thirty-four percent of the children had at least one MHD. Their rates of anxiety disorders (16%) and attention-deficit/hyperactivity disorder (ADHD, 16%,) were more common than general population rates. More than one-quarter of parents reported current psychosocial distress in their child (28-39%), and approximately half reported their own stress (51%) and worry about the financial burden (46%) associated with the GFD – the only treatment for the disease.

The findings are detailed in an article titled “Mental Health Disorders and Psychosocial Distress in Pediatric Celiac Disease,” which appears on the website of the Journal of Pediatric Gastroenterology and Nutrition. The article is scheduled to appear in the May 2020 print edition of the journal, which will be available April 24.

Coburn and her co-authors also compared the experiences of children diagnosed with CeD less than three months prior to the study with those diagnosed more than three months prior. They were surprised to find that patients’ rates of comorbid CeD and MHD didn’t differ depending on the time of diagnosis, says Coburn.

Parents of children with new CeD diagnoses were less confident in the GFD, but the timing of a CeD diagnosis did not affect the rates of MHD, stress and financial burden. Children with MHD had more anxiety, anger and overall distress as well as parents who were suffering with distress than those without MHD.

The researchers’ findings about the timing of diagnosis “seemed to indicate that perhaps there’s a chronic stress burden on families that doesn’t necessarily improve with time and might be exacerbated in children who have mental health disorders,” says Coburn, who directs psychosocial services for the hospital’s Celiac Disease Program.

Overall, the findings emphasize the importance of ongoing routine screening and treatment for psychosocial distress associated with CeD and the GFD.

The start of the study coincided with the establishment of the clinic, where Coburn and her colleagues were seeing patients with comorbid CeD and MHD. At the clinic, patients and their families are treated by a gastroenterologist as well as the clinic’s nutritionist, education team, psychologist, neurologist and neuropsychologist during an integrative multidisciplinary appointment.

Coburn notes that generally the psychosocial impact on patients with CeD has been overlooked or viewed as a minor condition. “Our work is showing that there are a lot of psychosocial vulnerabilities in children and adults with celiac disease.”

As she continues her research, Coburn sees a need “to advocate for incorporating psychological screening into routine medical treatment of patients with celiac disease. We’d like this to be part of best practices and want to develop behavioral treatments for patients so they’re succeeding with the gluten-free diet.”

“With ADHD there are problems with impulse control, which can make it extra hard to maintain a gluten-free diet,” says Coburn. The co-principal investigators want to study in-depth some of the families who participated in the earlier study to gauge how effectively they’re able to manage ADHD symptoms in order to maintain a gluten-free diet.

Coburn and Maegan Sady, a neuropsychologist at Children’s National, have received a $25,000 grant from the Lambert Family Foundation to study comorbid ADHD and CeD and how they affect a patient’s ability to adhere to the GFD.

audience members at the 2018 Gluten Free Expo keynote

Dispelling gluten-free myths and patient education headline the 2018 Washington DC Gluten-Free Education Day and Expo

audience members at the 2018 Gluten Free Expo keynote

On June 10, 2018, some of the brightest minds in the field gathered at the 2018 Washington DC Gluten-Free Education Day and Expo to discuss opportunities and challenges associated with living a gluten-free life.

The one-day expo focused on how the food we eat affects our brains, how to dispel gluten-free myths and how to think outside the box with new recipes and cooking demonstrations from local restaurants, bakeries and chefs.

Keynote speakers for this year’s symposium included Benny Kerzner, M.D., medical director, Celiac Disease Program at Children’s National, Jocelyn Silvester, M.D., director of Research, Celiac Disease Program at Boston Children’s Hospital and Ian Liebowitz, M.D. from Pediatric Specialists of Virginia.

Additionally, Edwin Liu, M.D., from Colorado Children’s Hospital and Ilana Kahn, M.D., from Children’s National gave a joint keynote on the autoimmune connection, focusing on conditions related to celiac disease and the gut-brain connection.

Teen mentors gave a panel discussion for the 13+ age group attending the conference in a session called “For Teens from Teens!” during which they discussed the challenges of navigating a gluten-free lifestyle as a teen.

In addition to the useful educational sessions, attendees visited many of the 57 vendor tables with gluten-free product samples voting for the best sweet and savory winners.

The Celiac Disease Program at Children’s National Health System started in 2009 to improve the way pediatric celiac disease is diagnosed and treated. Working in partnership with concerned members of our community, our Celiac Disease Program brings together a team of expert physicians, nurses, nutritional consultants and professional counselors dedicated to developing a national model for detecting and treating celiac disease in children.

gluten-free diet app

Celiac Program offers gluten-free diet app

gluten-free diet app

The Celiac Disease Program at Children’s National has created a new digital app for celiac disease and gluten-free diet management.

Celiac disease affects approximately one in 100 children, making it one of the most common conditions in children. To help patients and their families understand more about the disease and live a safe, gluten-free lifestyle, the Celiac Disease Program at Children’s National has created a gluten-free diet app.

The Celiac Disease and Gluten-Free Diet Digital Resource Center app was designed to offer all of the Celiac Disease Program’s educational tools in one place. “We have so many incredibly valuable resources, but all were housed in different places, making it very difficult to show people where to find them,” explains Vanessa Weisbrod, education director of the Celiac Disease program. “We created the app as a way to put everything in one place, but also as a mechanism for sharing our tools with the rest of the world.”

Available through the Apple App Store and Android Marketplace, the app gives users access to a variety of resources, including:

  • Safe and unsafe ingredient lists
  • Grocery store shopping tips
  • Gluten-free recipes accompanied by instructional cooking videos
  • Nutrition education
  • A monthly podcast
  • News feed of hot topics in the celiac and gluten-free community
  • Continuing education seminars led by celiac disease and gluten-free diet experts

“We are one of the few celiac programs in the country truly dedicated to developing high quality in-house patient education tools for families living with celiac disease,” says Weisbrod. “As we’ve shown our materials to other programs, they always ask us to share them. Through the app, anyone living a gluten-free lifestyle now has access to these remarkable tools.”