Research Writer, Celiac Disease Foundation
Because of a shortage of food options during the COVID-19 crisis, many patients living with celiac disease are facing a struggle to maintain a gluten-free diet. But for tens of thousands of celiac patients worldwide, it will not be the only nor the most difficult struggle brought on by the pandemic. Many will become infected with the coronavirus on top of their pre-existing chronic illness. It is vital that health-saving information for the patients and their healthcare providers be readily available.
A need for services
“Coeliac UK has seen a massive increase in demand for our services, with inquiries and calls for help increasing by 500 percent from people wanting to know the information surrounding coronavirus and celiac disease,” says Hilary Croft, chief executive of Coeliac UK.
Marilyn Geller, chief executive officer of the Celiac Disease Foundation in the United States, says more than 100,000 people have accessed its online resources about COVID-19.
“The greatest concern expressed by those in touch with the foundation is if people with celiac disease are at a higher risk for severe illness,” says Geller.
Risks of COVID-19
Patients with celiac disease show a slight but measurable increased risk for viral infections, according to Benjamin Lebwohl, MD, director of clinical research for the Celiac Disease Center at Columbia University in New York. If patients become infected with COVID-19, the increased risk of a severe outcome is probably none too negligible, he adds. However, he notes, this advice is based on extrapolation from studies of other infections, not COVID-19.
“For that reason, we sought to develop an international registry where we can study outcomes in celiac patients who are diagnosed with COVID-19,” says Lebwohl.
SECURE-Celiac (Surveillance Epidemiology of Coronavirus Under Research Exclusion) lets healthcare workers worldwide report the outcome for their patients with celiac disease and documented COVID-19. Patients with celiac disease who are diagnosed with COVID-19 can help further understanding of any special risk by asking their doctors to access the registry.
The other common concern from patients, Geller says, is “lack of availability of gluten-free products due to panic buying. We are working with our sponsors and vendors to provide direct-to-consumer sales of their products and to let patients know where on-shelf products can be found.”
Increasing healthcare access
Perhaps the only good news associated with this crisis is that COVID-19 may improve, in a very specific way, how healthcare can be accessed.
“We’ve transformed the way we practice medicine,” says Lebwohl. “Virtually our entire center is now running via televisits.”
He adds, “I think telehealth is here to stay. The medical community has been very slow in adopting this. Now with this crisis, we have adjusted to this reality overnight.”
Online doctor and dietitian visits for patients with celiac disease are now available anywhere in the United States.
Celiac disease affects 1 percent of the population, but an estimated 62 million patients worldwide are undiagnosed and face long-term medical complications. A lifelong gluten-free diet is the only treatment, needing consistent medical advice to monitor its effectiveness.
Michelle Laforest, chief executive officer of Coeliac Australia, says, “Despite the challenging and unpredictable environment facing us all, we believe that inspiring the spirit of community – whether local or international – has never been more vital.”