Families report high levels of stress between the initial testing and confirmation of celiac disease in a child, according to data from a longitudinal study presented at the Pediatric Academic Societies (PAS) 2026 Meeting.

Celiac disease diagnosis in children is often delayed after months or years of symptoms, lead author Christian Farrier, MD, pediatrics resident and PhD student at the University of Oxford, Oxford, England, said in an interview.

“Less is known about the lived experience of families navigating that diagnostic journey, particularly through primary care, where most children first present,” said Farrier, who conducted the study as part of his doctoral degree program. “I wanted to understand how parents make sense of their child’s symptoms over time, how they interact with healthcare systems, and how they ultimately received a diagnosis of celiac disease for their child,” he said.

Farrier and colleagues conducted a total of 38 interviews with parents of 19 children in the UK who were diagnosed with celiac disease. The children ranged in age from 1 to 16 years and had been diagnosed during the 6 months preceding study enrollment. Each parent was interviewed twice, 6 months apart. “Following families across two interviews allowed me to capture how their experiences of diagnosis and understanding of celiac disease evolved,” Farrier said.

Parents described emotional distress around the challenges of obtaining the correct diagnosis, and the stress of the waiting period between the first test for celiac disease and a confirmed diagnosis. After the diagnosis, parents reported being stressed by lifestyle changes, including the need for a gluten-free diet for their child, and by the child’s feelings that they are different and do not fit in.

Early barriers reported by parents included communicating with healthcare providers, navigating the healthcare system, and receiving conflicting information about celiac disease. They also reported concerns about the cost and accessibility of gluten-free foods.

The distress reported during the period of waiting for confirmatory testing was particularly striking, Farrier said. “Families described a prolonged period of limbo where they were often uncertain whether their child should remain on gluten, and some felt as though they were actively harming their child by continuing to feed them gluten on medical advice while awaiting results,” he said.

“I was also struck by the profound social adjustment celiac disease required, particularly for children,” Farrier added. “Parents spoke at length about how hard it was for their children to navigate birthday parties, school field trips, team sports, and travel while eating differently from everyone around them,” he said. Celiac disease may be framed mainly as a dietary management issue, but these families made clear that it carries a significant and lasting emotional and social toll as well, Farrier said.

Key clinical takeaways from the parent interviews start with the need for clear communication between providers and parents, Farrier said. This includes ensuring timely follow-through on confirmatory testing where appropriate, so families aren’t left in prolonged uncertainty about the diagnosis, he said. Families also need accessible and consistent information at each stage of the diagnostic journey, and system-level improvements could meaningfully reduce delays in testing, he added.

The study’s limitations include a lack of generalizability given the design, and the focus on individuals and families in the UK health system, which also limits direct transferability to health systems with different primary care structures or celiac screening approaches, Farrier said. In addition, participants were mainly recruited through a charitable organization (Coeliac UK); therefore, families with lower health literacy or limited access to resources may have been underrepresented, he said.

Diagnostic Delays Add to Stress

Awareness of celiac disease and the use of diagnostic testing, including in children with diabetes and other related conditions, is greater in the US today than it was in the past, said Catherine Haut, DNP, CPNP-AC/PC, associate professor at the Thomas Jefferson University College of Nursing, Philadelphia.

“However, there are still barriers to the diagnosis that cause frustration for parents and families, and the current study, despite the small sample size, reflects this persistent problem,” said Haut, who was not involved in the study.

Accurate testing for celiac disease requires the child to consume gluten, which may be unexpected and cause distress for families, she noted. A celiac disease diagnosis, especially for school-aged children, can be challenging in many ways, mainly the necessity for diet and lifestyle changes, Haut added.

Although the study by Farrier and colleagues was conducted in the UK, the takeaways are applicable for clinicians in the US, Haut said. “It is important to address the challenges faced by patients and families with any chronic illness, but awareness of celiac disease, including its recognition, testing, and required lifestyle changes, has emerged relatively slowly [in the US], making continued data collection and research dissemination important,” Haut said.

Haut said she believes that pediatric providers in the US are more aware of celiac disease and more likely to test symptomatic children. However, she emphasized that additional research on family support needs after a child’s diagnosis is still warranted.

Farrier encouraged clinicians to recognize the significant emotional toll of celiac disease for children and parents. “It is a lifelong diagnosis with evolving support needs, and the adjustment required — socially, practically, and emotionally — extends beyond learning to follow a gluten-free diet,” he said.

The study was conducted as part of Farrier’s DPhil work at the University of Oxford, supported by a Rhodes Scholarship, as well as funding from the National Institute for Health Research School for Primary Care Research. Farrier reported having no financial conflicts to disclose. Haut had no financial conflicts to disclose.