People with celiac disease detail specific worries about COVID-19 in early Beyond Celiac survey results

May 6, 2020

Fears about availability of gluten-free food and potential severity of coronavirus emerge

By Amy Ratner, Medical and Science News Analyst

About 60 percent of adults who filled out a Beyond Celiac survey on celiac disease and COVID-19 said they are more worried than usual about the availability of gluten-free food, with a nearly equal number saying they have found a gluten-free item they intended to purchase unavailable when they last bought groceries, preliminary survey results show.

“I worry that I will run out of “allowed” foods and will need to resort to eating grains and legumes again, or that I will run out of vegetables,” one person who took the survey wrote. “I’m worried that as time goes on gluten-free foods will become scarce,” noted another.

Two surveys collecting data

To date, nearly 225 people have filled out the survey, which launched early in the COVID-19 crisis in the United States. It is one of two surveys being conducted by Beyond Celiac related to celiac disease and coronavirus and is designed to gather data on how people with celiac disease are coping during the pandemic, with stay-at-home orders and social distancing in place. The second survey seeks input from those who have had symptoms or been diagnosed with COVID-19 through testing. Both remain open and are available at Go Beyond Celiac. Updated survey results will be shared in the future.

At the time they filled out the first survey, nearly 92 percent of respondents said they lived in a place with a shelter-at-home or stay-at-home order in place.

“It is frightening to not know when life will return to normal, to not know how the virus may impact me or my family if we get it, to not know if the medical resources will be available when we need them,” one survey respondent wrote.

Celiac disease and risk

About 60 percent of celiac disease patients who filled out the first survey said they think celiac disease puts them at greater risk for getting COVID-19 than the general population. Overall, people with conditions such as asthma were more likely to say they thought they would get worse symptoms if they did contract COVID-19.

“I seem to catch viruses easier and they are more severe for me than others,” one person wrote.

Several celiac disease experts, including, Salvatore Alesci, MD, Beyond Celiac chief scientist and strategy officer, and Ken Kilgore, MD, Beyond Celiac chief scientific investment officer, have noted that most people with celiac disease face the same risk as the general population, though there are some exceptions. For example, celiac disease patients who take an immunosuppressant medication for any conditions would have increased risk, experts say. About 6 percent of those who took the survey said they do take an immunosuppressant.

Related: Updated evidence-based information on celiac disease and COVID-19

“Experts say that a person with celiac disease is not likely at an increased risk and I believe that. I was initially concerned before that information was available,” one survey respondent explained. “I am very concerned that if I need to be hospitalized … there won’t be safe food for me in the hospital and that getting me safe food won’t be a priority for overworked hospital staff,” another wrote.

Nearly 90 percent of those who filled out the first survey said they had not been tested or had any symptoms of COVID-19. Only about 5 percent said they had been tested by a healthcare provider.

You can fill out the Go Beyond Celiac COVID-19 surveys, as well as several others about celiac disease, by joining Go Beyond Celiac on the website or the mobile app.

 

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