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The incidence of biopsy-proven CD in the Netherlands increased almost threefold between 1995 and 2010. In areas with a higher SES, relatively more children were diagnosed.

Objective Health-related quality of life (HRQoL) is an important outcome in chronic disease. Generic HRQoL questionnaires may not adequately reflect disease-specific challenges in coeliac disease. We investigated whether disease-specific HRQoL questionnaires add relevant information to generic measures that will better help to identify patients experiencing problems. Patients and methods We performed a cross-cultural validation of the Celiac Disease Quality Of Life-survey (CD-QOL), next we developed and validated a new disease-specific HRQoL questionnaire, and finally compared their predictive validity with the disease-generic RAND SF-36/SF-12 in 825 patients (mean age: 56.1±15.8 years) with (reported) biopsy-proven coeliac disease. Internal consistency and convergent, discriminative and predictive validity of the questionnaires was determined. Results Two Dutch versions of the CD-QOL were validated, consisting of 14 and six items, respectively (CD-QOL-14-NL, CD-QOL-6-NL). We developed and validated the CeliacQ-27, which has 27-items across three subscales (Limitations, Worries and Impact on daily life), and a short seven-item version, the CeliacQ-7. All questionnaires had excellent psychometric properties and differentiated well between active disease and clinical remission and strict versus poor dietary adherence. The added value of the disease-specific questionnaires to the generic HRQoL measure to the explained variance of symptom burden and dietary adherence was limited. Conclusion HRQoL in patients with coeliac disease can easily be assessed by brief generic as well as disease-specific measures. Disease-specific questionnaires, however, provide more explicit information on disease-relevant areas of functioning.

Aim: To evaluate the yield of routine laboratory tests and Dual Energy X-ray Absorptiometry (DEXA) scans in coeliac disease. Methods: A retrospective analysis of medical files of all followed-up patients with coeliac disease attending Rijnstate Hospital in 2016 was conducted with respect to blood tests of hemoglobin, vitamin B12, folate acid, iron status, calcium, vitamin D, glucose, thyroid function, DEXA-scans and related symptoms or signs of abnormalities. All patients had positive coeliac serology and/or biopsy-proven coeliac disease and attended regular visits after diagnosis. The chi-square test for trend was used for statistical analysis: a two-tailed probability of p < 0.05 was considered significant. Results: We analyzed 250 patients with a median follow-up of 7.8 (1-22) years. At diagnosis, we found anemia in 24.4%, iron deficiency in 38%, folic acid deficiency in 22.6% and vitamin B12 deficiency in 15.9%. All deficiencies recovered within 1-2 years with or without supplements. Deficiencies or autoimmune diseases occurred in 50 patients (37 possibly coeliac-related) during follow-up. Twelve cases of coeliac-related deficiencies or autoimmune diseases occurred in patients with normal values at diagnosis of whom 10 were asymptomatic (incidence 10/1000 patient years). Osteoporosis and osteopenia were present in 23.3% and 35% at diagnosis. In most patients bone mineral density (BMD) improved or stabilized during follow up (p < 0.05), 8% deteriorated. Conclusions: The incidence of asymptomatic coeliac-related deficiencies or autoimmune diseases is low in patients with normal values at diagnosis. Therefore, routine laboratory screening is not necessary in this group: attending regular follow-up visits should be sufficient. DEXA scans are recommended.

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