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Dale Lee, MD, told HCPLive that regular monitoring and potential psychosocial support are important to help children with celiac disease maintain a gluten-free diet.
Data was presented at the 2025 NASPGHAN Annual Meeting, held in Chicago, Illinois, from November 5-9, 2025. During a session titled "A Precision Follow-Up: Best Practices for Follow-Up and Surveillance in Celiac Disease," Dale Lee, MD, physician, Director, Celiac Program, Seattle Children's Hospital, emphasized the critical importance of structured follow-up care for children diagnosed with celiac disease.
“There's not enough emphasis on follow-up,” Lee said, noting that while clinicians often focus on making the correct diagnosis, ensuring patients understand the value of ongoing monitoring is equally important. He stressed that one of the challenges is the lack of clear, standardized guidelines: “One of the difficulties for physicians is that there are not great, clear-cut guidelines on how to do follow-ups.”
Lee outlined his recommendations for follow-up intervals, beginning shortly after diagnosis and initiation of a gluten-free diet.
“I think it's important to have a follow-up at the 3-month mark, have a dialogue directly with the family and the patients about how well gluten-free diets are going. Also, repeating labs with the TTG IGA at that point in time really provides a little bit of feedback to the family about how their hard work with the gluten-free diets is doing.” Thereafter, Lee suggested follow-ups every six months to monitor laboratory values and symptom resolution, with annual visits once the patient is stable.
He also emphasized the necessity of collaboration between gastroenterologists and primary care providers. “I think it's so important for the GI doctor to be in close collaboration with the general pediatrician and primary care doctors. So when I see patients, I'm writing a note that goes directly to the primary care provider. We're discussing what is going well for this individual, the individual's family, and the child. And we're also talking about which challenges there are.”
Lee highlighted that adherence to a gluten-free diet carries a substantial treatment burden, including psychosocial challenges.
“The burden is usually not just symptoms, but it's how to survive and to be able to maintain an integrated gluten-free diet in everyday life. And I think that's where the psychological piece is really important.” He recommended screening for psychological well-being and incorporating psychologists or social workers whenever possible.
Citing the variable phases of childhood and adolescence, Lee underscored the importance of individualized, proactive care.
“As children, they're going to be entering different phases in life, high school, middle school, and college. So these are all areas where we want to be able to intervene, and there are higher risk times for the patient, so we as the medical team want to be able to support them.”
By focusing on structured follow-up, interdisciplinary collaboration, and attention to the psychosocial impact of the diet, Lee emphasized that clinicians can significantly improve quality of life and long-term outcomes for pediatric patients with celiac disease.
Reference:
Lee D. A Precision Follow-Up: Best Practices for Follow-Up and Surveillance in Celiac Disease. Single-topic symposium. Presented at: 2025 NASPGHAN Annual Meeting. November 5-9, 2025. Chicago, Illinois.
