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NASPGHAN meeting logo

Children’s National Gastroenterology team presents virtually at NASPGHAN conference

NASPGHAN meeting logo

The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) conference provides experts with an advanced understanding of the normal pediatric development and physiology of diseases of the gastrointestinal tract and liver.

The Children’s National Hospital gastroenterology team was due to present in-person at the conference but were unable to as a result of the COVID-19 pandemic. Instead they presented educational sessions virtually to gastroenterology experts across the country. The presentations spanned a variety of topics and are listed below:

  • Trisomy 21: Not all duodenal abnormalities are Celiac Disease
  • Celiac Kids Research Consortium (CeliacKIDS)
  • Postoperative complications in pediatric IBD patients on biologic therapy undergoing intra-abdominal surgery
  • 6 week infliximab trough levels as predictor of therapeutic maintenance infliximab trough levels and patient outcomes
  • Inflammatory bowel disease characteristics in pediatric patients of South Asian origin in the United States
  • Investigating treatment response rates in pediatric inflammatory bowel disease patients after switching biologics
  • Severely elevated fecal calprotectin in a pediatric patient with persistent giardiasis
  • Persistent hypoglycemia after treatment of gestational alloimmune liver disease (GALD)

The 2021 annual conference will be held on November 4-6 in Nashville, Tennessee.

gluten free cupcakes

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.

alphabet pasta spelling out "gluten free"

Do celiac families need two toasters?

alphabet pasta spelling out "gluten free"

Parents using multiple kitchen appliances and utensils to prevent their child with celiac disease from being exposed to gluten may be able to eliminate some cumbersome steps according to new research.

Parents using multiple kitchen appliances and utensils to prevent their child with celiac disease from being exposed to gluten may be able to eliminate some cumbersome steps. A new, preliminary study from Children’s National Hospital published in the journal Gastroenterology found no significant gluten transfer when tools like the same toaster or knives are used for both gluten-free and gluten-containing foods.

The study authors found that performing these types of kitchen activities using the same kitchen equipment may not pose a high risk of gluten exposure for people with celiac disease. Additionally, basic kitchen hygiene, including routine washing of utensils and equipment with soap and water and handwashing, can further reduce or eliminate gluten transfer.

The authors tested three scenarios where it was thought that gluten transfer could be high enough to pose a gluten exposure risk for someone with celiac disease – in general, greater than 20 parts per million (ppm) or .002%.* However, the study found less gluten transfer than expected in the following scenarios:

  • Toasting bread: Gluten levels remained at less than 20 ppm when gluten-free bread was toasted in the same toaster as regular bread, across repeated tests and even when gluten-containing crumbs were present at the bottom of the toaster.
  • Cupcakes: Gluten levels also remained below 20 ppm in most cases when a knife used to cut frosted gluten-containing cupcakes was then used to cut gluten-free cupcakes, even when visible crumbs were stuck to the icing on the knife.
  • Pasta: Cooking gluten-free pasta in the same water as regular pasta did cause significant gluten transfer, sometimes as high as 115 ppm. However, if the gluten-free pasta was rinsed under running tap water after cooking, the gluten transfer dropped to less than 20 ppm. If the pasta pot was simply rinsed with fresh water before being reused, then gluten transfer was undetectable.

*U.S. Food and Drug Administration regulations allow foods with less than 20 parts per million of gluten to be labeled “gluten-free.” It is not possible to detect zero ppm—the lowest detected level is 3 ppm (.0003%).

“So many celiac parents, including me, have taken every precaution to prevent a gluten exposure in our homes. In many cases that means having two of everything – toasters, knives and pasta pots, with little or no hard evidence showing we needed to,” says Vanessa Weisbrod, executive director of the Celiac Disease Program at Children’s National Hospital, who conceived and led the study. “Though the sample is small, this study gives me hope that someday soon we’ll have empirical evidence to reassure the families we work with that their best defense is not two kitchens – it’s simply a good kitchen and personal hygiene. And, that we can travel to grandma’s house or go on a vacation without worrying about a second toaster.”

“These are areas of the kitchen where today we coach families to exercise an abundance of caution. We still recommend following all guidelines from your celiac care team to prevent cross contamination while we do further study,” adds Benny Kerzner, M.D., the study’s senior author and director of the Celiac Disease Program at Children’s National Hospital. “But the results are compelling enough that it’s time for our larger celiac community to look at the current recommendations with a critical eye and apply evidence-based approaches to pinpoint the true risks for families and eliminate some of the hypervigilant lifestyle changes that we sometimes see after a family receives a celiac diagnosis.”

“This study provides novel data that quantifies the risk of gluten exposure when preparing gluten-free food alongside gluten-containing foods and highlights the need for further study in this area so that recommendations can be evidence-based,” notes Jocelyn Silvester, M.D., Ph.D. FRCPC, director of Research for the Celiac Disease Program at Boston Children’s Hospital who led the study’s biostatistical analysis.

The authors maintain that the most important thing families can do to prevent gluten reaction is practicing simple hygiene steps that include washing pots, pans and kitchen utensils with soap and water after each use (and before using them to prepare gluten-free food) and for all family members to wash their hands with soap and water before preparing gluten-free food.

“The treatment burden of maintaining a strict gluten-free diet has been compared to that of end-stage renal disease, and the partner burden to that of caring for a cancer patient,” says Marilyn G. Geller, chief executive officer of the Celiac Disease Foundation. “This preliminary study is encouraging that this burden may be reduced by scientifically evaluating best practices in avoiding cross-contact with gluten. We congratulate the Children’s National Celiac Disease Program team in taking this important first step in bettering the lives of celiac disease patients and their loved ones.”

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.