Quality standards for celiac disease comprehensive care units: A Spanish multidisciplinary consensus integrating professional expertise and patient perspectives

Table 1 Patient-identified concerns in celiac disease care and their clinical justification for quality standards

	Patient concern	Clinical justification for quality standards
1	Insufficient knowledge, low clinical suspicion, and poor awareness of diagnostic guidelines among physicians	CD has very heterogeneous presentation patterns, leading to delayed or missed diagnoses and long-term complications. Specialized units can standardize diagnostic pathways and improve early detection
2	Difficulties in ensuring timely referral to specialized settings	Excessive delays between symptom onset and diagnosis are common, resulting in prolonged patient morbidity and dissatisfaction
3	Lack of clearly defined criteria for recommending duodenal biopsy in patients with strong clinical suspicion but negative anti-tissue transglutaminase type 2 antibodies	Clinical practice regarding seronegative CD shows wide variability, which can lead to both underdiagnosis and overdiagnosis
4	Lack of clinical indicators for non-celiac gluten/wheat sensitivity	Structured protocols are needed to distinguish non-celiac gluten/wheat sensitivity from CD and other conditions that may mimic gluten-related disorders
5	Doubts regarding the appropriateness of advanced diagnostic procedures in uncertain cases	Novel and clear evidence-based algorithms are necessary to avoid unnecessary or insufficient advanced testing
6	Limited knowledge and training among clinicians who recommend a GFD	Insufficient clinician training often results in suboptimal dietary advice and poor adherence. There is a clear need for accurate and evidence-based dietary education as part of multidisciplinary support
7	Lack of policies for the general inclusion of dietitians in healthcare systems and, more specifically, in CD care	Delayed or absent patient access to dietitians in both primary and secondary care reduces the effectiveness of nutritional interventions and worsens patient outcomes
8	Limited resources for adequate psychological support, especially for children and adolescents recently diagnosed with CD	Unaddressed psychological needs may lead to maladaptive coping strategies, reduced dietary adherence, and persistent negative emotions, especially in the first year following diagnosis
9	Uncertainty about adherence to international guidelines for investigating non-responsive CD	Overall, non-adherence to evidence-based recommendations results in reduced rates of mucosal healing, impaired quality of life, and increased healthcare utilization due to unresolved or worsening disease. Regular, guideline-driven follow-up and multidisciplinary care are essential to optimize outcomes in this complex patient population
10	Lack of consensus regarding which patients can be monitored in primary care, which require specialist follow-up, and when shared management is appropriate	Specialist-led care (gastroenterology or pediatrics) is associated with higher rates of dietitian involvement and better dietary adherence compared with primary care alone. However, primary care follow-up can be suitable if there is access to structured dietary counselling and clear protocols for monitoring complications and adherence

CD: Celiac disease; GFD: Gluten-free diet.