Valencia, Spain, June 5, 2025-A new consensus, developed by 29 experts from nine pediatric, gastroenterological, and family medicine scientific societies in collaboration with three patient associations, aims to redefine the monitoring of celiac disease in children and adolescents. The goal is to integrate these practices into primary care settings and prevent up to one in three adolescents from abandoning their medical reviews, a concerning trend that poses notable health risks.

The Challenge: Adolescent Abandonment of Medical Control

Despite the availability of an effective treatment-a gluten-free diet-up to 35% of diagnosed adolescents discontinue their medical reviews. This abandonment can lead to long-term health complications. The Spanish Association of Pediatrics (AEP) addressed this issue at its 71st congress by presenting a consensus document that promotes shared care between primary care and hospital units.

Expert Insights: The Importance of Follow-Up

The real challenge is not the diagnosis, but the follow-up. A gluten-free diet is not enough if there is no strict adherence, education and structured monitoring. We cannot afford to lose the patient right in the stage in which he needs it the most.

Dr. Enriqueta Román Riechmann, Chief of Pediatrics Service, Puerta de Hierro University Hospital, Majadahonda, Madrid, and Coordinator of the consensus

Dr. Román Riechmann emphasizes the critical need for structured monitoring and education to ensure adherence to the gluten-free diet, notably during adolescence.

Key Components of the New Consensus

• Adapts the 2022 recommendations of the European Society of Gastroenterology, Hepatology and Pediatric Nutrition (ESPGHan) to the Spanish health context.
• Defines a clear follow-up protocol from diagnosis to transition into adult life.
• Promotes shared care between primary and specialized care for continuous clinical, serological, and nutritional control.
• establishes objective criteria for monitoring in health centers, involving dietitians-nutritionists, pediatric nursing, and child psychology.
• Includes bidirectional referrals and strategic use of digital tools and telemedicine for adherent patients.

Primary Care: A Cornerstone of Sustainable Attention

The consensus emphasizes the role of primary care pediatricians in monitoring controlled celiac disease, provided the patient is stable and meets specific criteria. Pediatricians with knowledge of the recommendations for monitoring and gluten-free diet can perfectly assume the monitoring of these patients,avoiding unnecessary displacements and promoting healthcare continuity, says Dr. Román.

Monitoring Schedule

The protocol outlines a structured monitoring schedule:

• First review: 3-6 months after starting a gluten-free diet.
• subsequent controls: Every 6-12 months during childhood.
• stabilized patients: Follow-up every one to two years, with primary care playing a central role.

Adolescence: A Critical Transition Phase

The transition to adult care is a key focus, addressing the high rate of review abandonment among adolescents. factors contributing to this include lack of symptoms, desire for independence, and social challenges associated with the gluten-free diet.

The abandonment of follow-up at this stage can have vital consequences: from juggling, delay of development and osteoporosis, to infertility or even certain types of cancer. And most worrying: it is preventable.

Dr. Román riechmann

Structured Transition Guidelines

The consensus provides guidelines for a structured transition:

• Preparation: begins between ages 12 and 13, promoting autonomy and disease knowledge.
• Personalized plan: Developed between ages 14 and 15, considering patient maturity, adherence, clinical situation, and social context.
• Transition completion: At age 18,with transfer to family doctors or adult digestive specialists.

Successful transition elements include patient education, autonomy development, joint sessions with pediatric and adult professionals, and comprehensive clinical reports. Joint appointments with the new health team,including nursing,are recommended for practical education.

Beyond clinical Aspects

The document acknowledges the emotional and social impact of celiac disease, particularly on children and adolescents. It promotes the use of validated tools to assess quality of life, detect distress or social isolation, and intervene early.

Specific recommendations are included for special cases (IgA deficiency, potential celiac disease, coexistence with type 1 diabetes or thyroid disease), and also guidelines on vaccination and nutritional supplementation.

Collaborative Effort and Publication

The consensus, published in the Anales de Pediatría journal, involved 29 experts from nine scientific societies and has the endorsement of the Federation of Celiac Associations of Spain (FACE), the Association of Celiacs of Catalonia, and the Association of Celiacs and Gluten Sensitive to Madrid. It emphasizes a shared, multidisciplinary approach sensitive to each patient’s personal and social context.

It is an possibility to make it better,so that no celiac child is left without tracking. Disseminating this document is our next great task.

Dr. Román Riechmann