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celiac testimony on Capitol Hill

Talking on Capitol Hill about the need for increased celiac research funding

celiac testimony on Capitol Hill

Celiac Disease Program leaders joined policymakers, experts and families to make the case for additional celiac disease research funding on Capitol Hill in January 2020.

Federal funding for celiac disease has been virtually nonexistent, despite the fact that celiac is one of the most common genetic autoimmune disorders. The lack of funding directly translates into a shortage of research into better understanding celiac disease, its mechanisms and potential treatment alternatives to the strict diet that is the current standard of care.

In January, the leaders of the Celiac Disease Program at Children’s National Hospital, Dr. Benny Kerzner and Vanessa Weisbrod, gave oral testimony as part of a congressional briefing hosted by Congressman Dwight Evans (PA) on the need for significant research funding in this area. Also presenting were Jon and Leslie Bari, founders of Celiac Journey and Gluten Free Finds PA, who are parents of a child with celiac, as well as Dr. Arjunot Singh, attending physician in gastroenterology at Children’s Hospital of Philadelphia.

The briefing focused on how federal funding for celiac research could bring multi-center, large scale research projects to the study of the condition for the first time, with the goal of accomplishing the following:

  • Better understanding the immunological basis of the disease
  • Identifying celiac disease’s triggers and how to prevent them
  • Exploring potential treatments and/or cures, including those that might inhibit onset of the disease or induce tolerance of the gluten protein

In their testimony, Kerzner and Weisbrod noted that the only current treatment for celiac disease is a strict, lifelong gluten-free diet, and that there is no medication or cure for the condition. Parents and children alike struggle with managing the diet and coping with the persistent fear of increased mortality from other conditions that commonly co-occur with celiac disease, including non-Hodgkins lymphoma, liver disease, small bowel cancers and other autoimmune conditions.

Weisbrod also spoke about an existing collaborative research and care infrastructure called the Celiac Kids Network – an informal consortium of 12 pediatric hospitals with celiac programs that research together, develop tools to measure gluten exposure risks, share best practices and collaborate on difficult cases. She made the case that should federal funding significantly increase, infrastructure is already in place to manage and oversee the types of research collaborations that could really make a difference for children.

“We dream of establishing a learning health system with a coordinated patient registry that is representative of all patients with celiac disease no matter where in the country they live,” Weisbrod concluded in her testimony. “A national biorepository of patient blood and tissue samples would enable researchers from every medical discipline to join us in understanding how celiac disease affects kids. We could evaluate the biological and psychological outcomes of patients to look for interventions to improve quality of life. The sky is the limit. But to do this, we need big funding to collect big data, to make big differences.”

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.”