Frustration, fear, and luck play a role when a celiac disease diagnosis is pursued

Beyond Celiac poster presented at DDW details patients’ path and the dynamics of seeking support

By Amy Ratner, director of scientific affairs

Frustration and distress about symptoms lead most people with celiac disease to seek a diagnosis, according to a poster presented by Beyond Celiac today at Digestive Disease Week (DDW).

Results from the qualitative study of responses from adults who participated in surveys in the Go Beyond Celiac registry also found that fear and embarrassment prompted some participants to seek support from friends and family on their path to diagnosis. However, those same factors had the opposite effect on others, preventing them from seeking social support.

“I was in a lot of pain and often fatigued,” one study participant wrote. “I relied on [family and friends] to keep me going and help me think through why I was experiencing these symptoms.”

“I do not enjoy talking about bowel movements to anyone…There is nothing sexy about this disease,” wrote another.

Presenting our Research at DDW

The study presented at DDW, the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery, was based on an analysis of a sample of open and closed responses to a survey in Go Beyond Celiac. Participants were 18 and older with a self-reported diagnosis of celiac disease or another gluten-related disorder. Both those who were diagnosed with celiac disease with a biopsy and those who reported having celiac disease without having a biopsy were included. 

The poster was presented by Beyond Celiac associate science project manager Erin Miller, MPH, who is one of several study authors from Beyond Celiac.

A second celiac disease poster with ties to Beyond Celiac, based on Medicare data collected in a partnership with the National Minority Health Quality Forum, was presented by Haley M. Zylberberg, MD, a gastroenterology fellow at Columbia University department of medicine and the lead study author. The study analyzed the correlations between relative prevalence of celiac disease and sociodemographic variables in the United States.

Seeking support on the way to diagnosis

Of more than 2500 people who answered the Go Beyond Celiac survey question of what facilitated their diagnosis, about half said access to health services played a role. “I was tired of not feeling well and needed someone [who] would help me fix it,” explained one participant.

Nearly 500 said they were motivated by frustration regarding their symptoms. Other factors included a push toward advocating for themselves in the healthcare system, support from others and luck.

“I found out I had celiac disease not so much because a [doctor] figured it out but more because I put my foot down and was adamant that I wanted every test [rerun] starting at the [beginning] until I found an answer,” a participant wrote.

More than 800 participants said they sought support from family and friends, with most prompted by symptom frustration. Other reasons included mental health concerns, a desire for a community of sympathetic people and convenience. Of the nearly 500 who said they did not seek support, about half noted emotional reasons including embarrassment about their symptoms, the feeling that celiac disease was not understood or taken seriously, and feeling celiac disease made them a burden. Others said they did not need or want support.

“The only person that can help me is me,” one participant wrote. “I am responsible for what goes in my mouth.