Celiac disease is an autoimmune condition that affects approximately 1% of the worldwide community. Originally thought to be confined mostly to the small intestine, resulting in villous atrophy and nutrient malabsorption, it has more recently been implicated in systemic manifestations as well, particularly when undiagnosed or left untreated. Herein, the physical and psychological symptoms of celiac disease are described and explored. An emphasis is placed on efforts to query prospective and confirmed celiac disease patients via the use of surveys. Suggestions are made regarding the development of efficacious surveys for the purpose of screening for celiac disease in undiagnosed persons, and monitoring efficacy of the gluten-free diet in persons diagnosed with celiac disease. There are broad categories of physical and psychological symptoms associated with celiac disease. There is also an essential interaction between such physical and the psychological symptoms. It is important to capture the association between symptoms, via queries directed toward suspected and confirmed persons with celiac disease. The use of anonymous online surveys can be helpful to determine the qualities and characteristics which may be associated with this condition. It is suggested that personal surveys should be given a greater role in screening and to lessen the time for diagnosis. Querying the subject directly via a survey can provide clues as to the types of symptoms being experienced by those with celiac disease currently, as well as to determine the salient aspects of the symptomatology, which will be useful for rapid screening and monitoring in future work.

Food-related quality of life (FRQoL) measures the impact of diet, eating behaviours and food-related anxiety on quality of life. Patients often view food and eating as central to symptom management. This is the first study to examine FRQoL in patients with inflammatory bowel disease, celiac sprue, achalasia and eosinophilic oesophagitis.

A total of 289 adults aged ≥18 years completed self-report measures evaluating the use of dietary treatment, FRQoL and other psychosocial outcomes. Principal component factor analysis evaluated potential subscales within the Food-Related Quality of Life Scale (FRQoL-29), to date validated only with a total score. Univariate analyses investigated differences in FRQoL based on diagnosis, whereas correlations and hierarchical regression identified relationships between FRQoL and psychosocial outcomes.

Factor analysis revealed four subscales within the FRQoL-29, with hypervigilance around eating being the primary driver in total score. Patients reported substantial impacts of FRQoL, with those not using diet therapy scoring significantly higher for FRQoL than those on a diet with and without the support of a registered dietitian (RD). Both social (r = 0.41, p < 0.001) and physical (r = 0.31, p < 0.001) domains of health-related quality of life were higher in patients with greater FRQoL.

FRQoL is significantly degraded in patients with organic gastrointestinal illness diseases, and hypervigilance around food appears to contribute most to this. Use of dietary treatment and meeting with an RD were associated with lower FRQoL, though it is unclear if patients sought RD assistance before FRQoL declined. Future studies on the relationship between dietary treatment, RD support and FRQoL are warranted.

Life-long adherence to gluten-free diet (GFD) and its assessment is essential for patients with celiac disease (CeD). We have developed and validated a tool for assessing adherence to GFD which can be used by both physicians and dietitians.

Phase 1: Development, content validation, and assessment of reliability of tool. Phase 2: Validation of tool against standard dietary evaluation (SDE) (gold standard), immunoglobulin A - anti-tissue transglutaminase antibodies (IgA anti-tTG Ab), and gluten immunogenic peptides in urine. Overall, 380 biopsy-confirmed patients with CeD (derivation cohort: n = 100 [phase 1], n = 210 [phase 2] and independent validation cohort, n = 70) were recruited.

Of an initial 90-point questionnaire, 84 items (Celiac Disease: Compliance Assessment Test [CD-CAT.v1]) were retained after content validation and pilot testing. In phase 1, upon administering CD-CAT.v1 on 100 patients, a comprehensive 35-item tool (CD-CAT.v2; α = 0.86) was obtained after removing items with low test-retest reliability and item-rest correlation values. In phase 2, upon administering CD-CAT.v2 on 210 patients, 22 items were removed having low correlation values (R < 0.4) with SDE. Finally, a 13-item tool (CD-CAT.v3; α = 0.84) was obtained with high criterion validity with SDE ( r = 0.806, P < 0.001), moderate convergent validity with celiac disease adherence test ( r = 0.602, P = 0.007), and moderate to weak correlation with urine gluten immunogenic peptides ( r = 0.46, P = 0.001) and IgA anti-tTG Ab ( r = 0.39, P = 0.008), respectively. The final 13-item tool also strongly correlated with SDE ( r = 0.78, P < 0.001) in an independent validation cohort of 70 patients with CeD. Principal component analysis identified 3 relevant subscales with a cumulative variance of 62%. The sensitivity and specificity of CD-CAT.v3 were 80% and 91%, respectively, with an area under curve of 0.905 with SDE. The obtained cutoff score of <19 from the receiver operating characteristic curve was further categorized as 13 = excellent, 14-18 = very good, 19-28 = average, and >28 = poor adherence to GFD.

CD-CAT is a new and rapid tool for monitoring dietary adherence to GFD with high sensitivity and specificity, which can be administered by both physicians and dietitians.

Coeliac disease (CD) affects 1% of the population worldwide. The only available evidence-based treatment is a strict gluten-free diet (GFD), which can readily lead to weight gain and unfavourable metabolic changes (eg, dyslipidaemia, fatty liver disease and insulin resistance) if followed without adequate dietary control. That can lead to increased cardiovascular risk (CV). We planned a randomised controlled trial to test the effect of a group-based, structured, 1-year, advanced dietary education, per the proposal of a Mediterranean diet vs standard of care, regarding the most relevant CV risk factors (eg, metabolic parameters and body composition) in CD patients.

Randomisation will occur after the baseline dietary education and interview in a 1:1 allocation ratio. Outcomes include anthropometric parameters (body composition analysis including weight, Body Mass Index, fat mass, per cent body fat, skeletal muscle mass, visceral fat area and total body water) and CV risk-related metabolic parameters (eg, lipid profile, homocysteine, fasting glucose, haemoglobin A1c, Homeostatic Model Assessment Index, metabolic hormones, waist circumference, blood pressure, liver function tests, liver steatosis rate and diet composition). In this study, we aim to draw attention to a new aspect regarding managing CD: dietary education can lead to a better quality of the GFD, thereby reducing the risk of potential metabolic and CV complications.

The study was approved by the Scientific and Research Ethics Committee of the Hungarian Medical Research Council (27521-5/2022/EÜIG). Findings will be disseminated at research conferences and in peer-reviewed journals.

NCT05530070.

The only treatment for Celiac Disease (CeD), which affects about 1% of the population, is a gluten-free diet (GFD). Studies have indicated an association between the GFD, a diminished quality of life (QOL), and maladaptive eating patterns. This study aims to explore food avoidance behaviors in adults with CeD.

This cross-sectional study assessed 50 adults with biopsy-confirmed CeD who completed validated surveys evaluating demographics, psychological factors, QOL, eating pathology, and food avoidance.

Overall CDQOL scores were good (mean: 62.7 out of 100). However, 58.0% of the participants self-elected to avoid one or more additional foods without diagnosed allergies or intolerances. Those avoiding one or more other foods had lower QOL scores (57.4 (23.2) vs. 70.2 (15.9)) compared to those only avoiding gluten (p = 0.034). The mean depression score (CESD) for the group avoiding foods beyond gluten was in the depressive range, unlike those avoiding only gluten (16.0 (4.9) vs. 13.6 (4.0), p = 0.078), with 77% of those avoiding more than gluten scoring above the CESD cut-off point of 15, indicating clinical depression.

Over half of participants (58%) reported avoiding additional foods beyond the GFD, a behavior associated with decreased QOL and increased depression.

Inadequate adherence to a gluten-free diet in coeliac disease triggers autoimmune reactions and can reduce the quality of life. The strict diet requires constant vigilance, which can cause psychological distress. Our research aimed to assess the quality of life in adult patients with coeliac disease and to find a correlation between quality of life, dietary intervention, and adherence. The study included 51 adult patients with coeliac disease who completed a quality-of-life questionnaire. Adherence was assessed using serological tests and a dietary adherence test. The patients were divided into two groups: those on a gluten-free diet for at least three months (Group I) and newly diagnosed patients (Group II). Group I showed a significant decrease in the dysphoria subscale of the quality-of-life test between the first and last surveys. Poor quality of life was associated with worse adherence in Group II. A higher "Health concerns" quality of life subscale score was also associated with worse adherence in Group II. Our results suggest that dietetic care may be beneficial for patients with coeliac disease by reducing dysphoria. We recommend regular and long-term dietary monitoring from diagnosis to ensure adherence to a gluten-free diet and to maintain quality of life.

Data on resilience, the ability to recover from adversity, in coeliac disease (CeD) are lacking.

To assess the degree of resilience in patients with CeD on a gluten-free diet (GFD), and its association with clinical features, sociodemographic factors, psychological morbidity, and quality of life (QOL).

A cross-sectional multicentre Italian study was conducted on adult CeD patients between May 2022 and April 2023. Connor-Davidson Resilience Scale (CD-RISC), the Coeliac Disease-specific Quality of Life Scale (CD-QOL), the State-Trait Anxiety Inventory scale (STAI-Y), and the Beck Depression Inventory scale (BDI) were used to evaluate resilience, QOL, anxiety, and depression, respectively. A multivariate analysis was conducted to identify factors independently associated with the degree of resilience.

A total of 305 patients (221 F, mean age at CeD diagnosis 36 ± 16 years) on a long-term GFD (median 8 years, IQR 3-17) were enrolled. A total of 298/305 patients (98%) had a high level of resilience (CD-RISC ≥ 35). At univariate analysis, resilience was statistically associated with male gender (p = 0.03), age at enrolment (p = 0.02), marital status (p = 0.03), QOL (p < 0.001), anxiety (p < 0.001), and depression (p < 0.001). On multivariate regression analysis, trait anxiety (STAI-Y2, p < 0.001) and depression (BDI, p = 0.02) were independent predictors of lower levels of resilience.

Higher trait anxiety predicts lower levels of resilience. Targeted interventions in this subgroup of patients may be helpful for their management and follow-up.

Celiac disease is an autoimmune condition that affects approximately 1% of the population worldwide. Although its main impact often concerns the small intestine, resulting in villous atrophy and nutrient malabsorption, it can also cause systemic manifestations, particularly when undiagnosed or left untreated.

Attention is directed to the possible psychological, psychiatric, and organic brain manifestations of celiac disease. Specific topics related to the influence and risk of such manifestations with respect to celiac disease are defined and discussed. Overall, eighteen main topics are considered, sifted from over 500 references.

The most often studied topics were found to be the effect on quality of life, organic brain dysfunction and ataxia, epilepsy, Down syndrome, generalized psychological disorders, eating dysfunction, depression, and schizophrenia. For most every topic, although many studies report a connection to celiac disease, there are often one or more contrary studies and opinions. A bibliographic analysis of the cited articles was also done. There has been a sharp increase in interest in this research since 1990. Recently published articles tend to receive more referencing, up to as many as 15 citations per year, suggesting an increasing impact of the topics. The number of manuscript pages per article has also tended to increase, up to as many as 12 pages. The impact factor of the publishing journal has remained level over the years.

This compendium may be useful in developing a consensus regarding psychological, psychiatric, and organic brain manifestations that can occur in celiac disease and for determining the best direction for ongoing research focus.

Patients with coeliac disease (CD) need to follow a strict gluten-free diet to manage symptoms and prevent complications. Restrictions imposed by the diet can be challenging and affect quality of life (QoL). We explored sources of variation in QoL among patients with CD.

We conducted an online survey of coeliac patients in the UK, including a CD-specific QoL tool (CD-QOL V.1.0), questions on diet adherence and an optional comment box at the end. The survey was disseminated via social media and went live between January and March 2021. We performed multiple linear regression and free text analysis.

We found a median CD-QOL score of 61 (IQR 44-76, range 4-100, n=215) suggesting good QoL (Good >59); however, the individual QoL scores varied significantly. Regression analyses showed that people who found diet adherence difficult and people adhering very strictly had a lower QoL. Free text comments suggested that people who adhered very strictly may do so because they have symptoms with minimal gluten exposure. People who found diet adherence difficult may be people who only recently started the diet and were still adjusting to its impact. Comments also highlighted that individuals with CD often perceive a lack of adequate follow-up care and support after diagnosis.

Better support and follow-up care is needed for people with CD to help them adjust to a gluten-free diet and minimise the impact on their QoL. Better education and increased awareness are needed among food businesses regarding cross-contamination to reduce anxiety and accidental gluten exposure.

Celiac disease (CD) is an autoimmune chronic enteropathy provoked by gluten ingestion in genetically predisposed individuals. Considering it´s only safe treatment is a lifelong gluten-free diet, the burden of living with the disease becomes evident, as well as the need to assess CD health-related quality of life (HRQOL). This review aims to identify and analyze the instruments used to evaluate the HRQOL of adults with CD. This integrative review using a systematic approach was designed to achieve high scientific standards. Accordingly, the search strategy was developed and executed as recommended by the guideline of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Detailed individual searches were developed to Pubmed, Science Direct, Scopus, Web of Science, and Google Scholar. After careful analysis of the papers, 43 studies were included, in which seven instruments were identified: Celiac Disease Questionnaire (CDQ) (n=21), Celiac Disease Specific Quality of Life Instrument (CD-QOL) (n=17), Celiac Disease Assessment Questionnaire (CDAQ) (n=4), CeliacQ-7 (n=1), CeliacQ-27 (n=1), Black and Orfila´s self-developed instrument (n=1) and the Coeliac Disease Quality of Life Questionnaire (CDQL) (n=1). The CDQ and CD-QOL were the two most applied instruments. Since the first focuses on the physical and mental symptoms related to the disease and the second focuses on the emotional repercussions of adhering to the GFD treatment for life (dysphoria), the CDQ application is an interesting option for countries that struggle with public policies for CD patients and patients with active CD. The CD-QOL could be used for countries with strict regulations for CD and gluten-free products and populations in remission. When comparing results among different populations, it is preferable to utilize culturally validated instruments, which have been applied across multiple countries, providing greater comparability between study findings.

A subgroup of adults with celiac disease experience persistent gastrointestinal and extraintestinal symptoms, which vary between individuals and the cause(s) for which are often unclear.

The present observational study sought to elucidate patterns of persistent symptoms and the relationship between those patterns and gluten-free diet adherence, psychiatric symptoms, and various aspects of quality of life (QOL) in an online sample of adults with celiac disease. U.S. adults with self-reported, biopsy-confirmed celiac disease (N = 523; Mage = 40.3 years; 88% women; 93.5% White) voluntarily completed questionnaires as part of the iCureCeliac® research network: (a) Celiac Symptoms Index (CSI) for physical symptoms and subjective health; (b) Celiac Dietary Adherence Test for gluten-free diet adherence; (c) PROMIS-29, SF-36, and Celiac Disease Quality of Life Survey for psychiatric symptoms and QOL. Symptom profiles were derived using latent profile analysis and profile differences were examined using auxiliary analyses.

Latent profile analysis of CSI items determined a four-profile solution fit best. Profiles were characterized by: (1) little to no symptoms and excellent subjective health (37% of sample); (2) infrequent symptoms and good subjective health (33%); (3) occasional symptoms and fair to poor subjective health (24%); (4) frequent to constant symptoms and fair to poor subjective health (6%). Profiles 2 and 3 reported moderate overall symptomology though Profile 2 reported relatively greater extraintestinal symptoms and Profile 3 reported relatively greater gastrointestinal symptoms, physical pain, and worse subjective health. Profiles differed on anxiety and depression symptoms, limitations due to physical and emotional health, social functioning, and sleep, but not clinical characteristics, gluten-free diet adherence, or QOL. Despite Profile 3's moderate symptom burden and low subjective health as reported on the CSI, Profile 3 reported the lowest psychiatric symptoms and highest quality of life on standardized measures.

Adults with celiac disease reported variable patterns of persistent symptoms, symptom severity, and subjective health. Lack of profile differences in gluten-free diet adherence suggests that adjunctive dietary or medical assessment and intervention may be warranted. Lower persistent symptom burden did not necessarily translate to better mental health and QOL, suggesting that behavioral intervention may be helpful even for those with lower celiac symptom burden.

There is a need to develop safe and effective pharmacologic options for the treatment of celiac disease (CeD); however, consensus on the appropriate design and configuration of randomized controlled trials (RCTs) in this population is lacking.

A 2-round modified Research and Development/University of California Los Angeles Appropriateness Method study was conducted. Eighteen gastroenterologists (adult and pediatric) and gastrointestinal pathologists voted on statements pertaining to the configuration of CeD RCTs, inclusion and exclusion criteria, gluten challenge, and trial outcomes. Two RCT designs were considered, representing the following distinct clinical scenarios for which pharmacotherapy may be used: trials incorporating a gluten challenge to simulate exposure; and trials evaluating reversal of histologic changes, despite attempted adherence to a gluten-free diet. Each statement was rated as appropriate, uncertain, or inappropriate, using a 9-point Likert scale.

For trials evaluating prevention of relapse after gluten challenge, participants adherent to a gluten-free diet for 12 months or more with normal or near-normal-sized villi should be enrolled. Gluten challenge should be FODMAPS (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) free, and efficacy evaluated using histology with a secondary patient-reported outcome measure. For trials evaluating reversal of villus atrophy, the panel voted it appropriate to enroll participants with a baseline villus height to crypt depth ratio ≤2 and measure efficacy using a primary histologic end point. Guidance for measuring histologic, endoscopic, and patient-reported outcomes in adult and pediatric patients with CeD are provided, along with recommendations regarding the merits and limitations of different end points.

We developed standardized recommendations for clinical trial design, eligibility criteria, outcome measures, gluten challenge, and disease evaluations for RCTs in patients with CeD.

In this cross-sectional study, we aimed to evaluate metabolic control, adherence to a gluten-free diet (GFD), and quality of life (QoL) in individuals with type 1 diabetes (T1D) and celiac disease (CD).

We targeted individuals with T1D and CD at a major tertiary hospital in Saudi Arabia. We gathered retrospective data from medical records and prospectively assessed glycemic control using HbA1c and ambulatory glucose metrics, adherence to a GFD using the Celiac Dietary Adherence Test (CDAT), and QoL using the Celiac Disease Quality of Life survey (CD-QoL).

Forty-eight out of 1095 patients screened (4.38%) were included. Mean age and HbA1c were 21.3 (± 6.6) and 8.3% (± 0.8%). The average time in range% and above range% were 38.5 (range 24-68) and 29.6 (± 7.4). The median hypoglycemic events/month was 8, with a median duration of 80 min. The median overall CDAT and CD-QoL scores were 20.5 and 54. No significant correlations were observed between glucose management indicator (GMI), % in target, and CDAT/CD-QoL scores (all p > 0.05).

No significant effect of GFD on QoL or glycemic control was observed. Further prospective studies are warranted to establish solid evidence of the impact of GFD on individuals with T1D and CD.

There is only limited and controversial information available on the cardiovascular (CV) risk in coeliac disease (CD). In this study, we plan to investigate the body composition and CV risk-related metabolic parameters at the diagnosis of CD and on a gluten-free diet in a Hungarian cohort of patients with CD.

This study consists of two case-control studies and a prospective cohort study, involving newly diagnosed and treated patients with CD with age and sex-matched non-CD control subjects with an allocation ratio of 1:1. CD-related symptoms, quality of life, quality of the diet and CV risk will be assessed with questionnaires. Our primary outcomes are body composition parameters, which will be estimated with InBody 770 device. Secondary outcomes are CV-risk related metabolic parameters (eg, serum lipids, haemoglobin A1c, homeostatic model assessment index, liver enzymes, homocysteine, interleukin 6, galectin-3) and enteral hormones (leptin, ghrelin, adiponectin) measured from venous blood samples for all participants. Fatty liver disease will be assessed by transabdominal ultrasonography. In statistical analysis, descriptive and comparative statistics will be performed. With this study, we aim to draw attention to the often neglected metabolic and CV aspect of the management of CD. Findings may help to identify parameters to be optimised and reassessed during follow-up in patients with CD.

The study was approved by the Scientific and Research Ethics Committee of the Hungarian Medical Research Council (27521-5/2022/EÜIG). Findings will be disseminated at research conferences and in peer-reviewed journals.

NCT05530070.

Coeliac disease (CeD), a common autoimmune condition, requires strict adherence to a gluten-free diet (GFD). Adherence to the GFD has been associated with quality of life (QOL). However, there may be other diet-related concerns, such as overall diet patterns, including diet quality or ultra-processed food (UPF) consumption, possibly associated with QOL among people with CeD following a GFD that have not been examined.

Diet quality was determined based on 24-h diet recalls of a cross-sectional prospectively recruited sample of 80 participants (50 adults and 30 teens) with biopsy-confirmed CeD ('Study Sample') using the Healthy Eating Index and Alternate Mediterranean Diet score. The amount of UPF consumed was assessed using Nova, a food processing classification system. QOL was measured using Celiac Disease-Specific Quality of Life (CDQOL) and Celiac Disease Pediatric-Specific Quality of Life (CDPQOL). The Study Sample's diet patterns were compared with National Health and Nutrition Examination Survey (NHANES) groups (25 adults reporting prior CeD and GFD; 51 adults with new CeD and no GFD; 15,777 adults and 2296 teens without CeD). The relationship of the Study Sample's diet patterns with CDQOL/CDPQOL was assessed using analysis of covariance.

The Study Sample's diet patterns were suboptimal but generally favourable compared with all NHANES groups. Compared to Study Adults with the highest tertile of UPF, those with the lowest tertile had significantly higher CDQOL (mean: 67.6 vs. 78.3, p < 0.001). Compared to Study Teens with the lowest tertile of AMED, those with the highest tertile had significantly higher CDPQOL (mean: 67.0 vs. 79.9, p < 0.01).

Maintaining high diet quality and minimising UPF may be important for CeD-specific QOL among individuals with CeD maintaining a GFD.

The only treatment for celiac disease (CeD) is strict lifelong adherence to a gluten-free diet (GFD). In some individuals the demands of a GFD may contribute to maladaptive eating attitudes and behaviors that impair quality of life (QOL). The Celiac Disease Food Attitudes and Behaviors (CD-FAB) is an easily administered and scored 11-item tool querying potentially maladaptive food attitudes and behaviors resulting from beliefs around gluten exposures and food safety.

To assess the usefulness of the CD-FAB in establishing the presence of maladaptive food attitudes and behaviors among adults with CeD and to explore the relationship between these attitudes and behaviors and other factors including QOL, anxiety, depression, CeD symptoms and personality traits.

The study is a cross-sectional pilot of 50 adults (mean age 29.6 years) with biopsy-proven CeD who followed a GFD for at least one year and had no self-reported eating disorder diagnosis. High scores on the CD-FAB tool suggest higher disordered eating attitudes and beliefs.

Compared to lower scores (mean 20.2), higher (worse) CD-FAB scores (mean 54.5) were positively associated with recency of diagnosis, number of CeD-related gastrointestinal symptoms, and the personality trait of neuroticism. Higher CD-FAB scores were statistically and clinically significantly associated with diminished QOL (p < 0.001). The relationship with anxiety and depression was less clear but trended in the expected direction.

The CD-FAB may be a useful tool for dietitians who wish to monitor maladaptive food attitudes and behaviors among their CeD patients, especially in the first-year post-diagnosis.

Coeliac disease (CD) is a life-long food-related disorder with a global prevalence of approximately 1%. Patients with CD often experience reduced health-related quality of life that could improve with a strict adherence to a gluten-free diet (GFD).

To obtain visual analogue scale (VAS), time trade-off (TTO) and willingness-to-pay (WTP) values amongst patients with CD.

In 2020-2021, a cross-sectional online survey was conducted amongst 312 adult CD patients in Hungary. Patients completed the Gastrointestinal Symptom Rating Scale (GSRS) and evaluated their current health and three hypothetical health state vignettes defined based on dietary adherence using VAS, conventional 10-year TTO and WTP. Multivariate regressions were used to explore the effect of patients' demographic and clinical characteristics on utility and WTP values.

Mean VAS values for current health and 'CD with strict adherence to GFD', 'CD with loose adherence to GFD' and 'CD without GFD' hypothetical health states were 79.69 ± 18.52, 85.36 ± 16.18, 62.44 ± 19.91 and 36.69 ± 25.83, respectively. Corresponding mean TTO utilities were: 0.90 ± 0.19, 0.91 ± 0.20, 0.87 ± 0.23 and 0.76 ± 0.29. Mean annual WTP values for returning to full health were: €845 ± 1077, €648 ± 1002, €862 ± 1135 and €1251 ± 1496. Older age at diagnosis, male sex, more severe gastrointestinal symptoms (GSRS) and having comorbidities were associated with lower VAS and TTO or higher WTP values for current own health (p < 0.05).

This is the first study to report TTO utilities for CD health states. Strict adherence to the GFD may result in substantial health gains in symptomatic patients. Utilities and WTP results can be used to estimate benefits of GFD in cost-utility and cost-benefit analyses.

Background: Health-related quality of life (HRQOL) assessment in patients with celiac disease (CD) leads to understanding the impact of the CD and interventions on the individual and society. The aim of this study was transcultural adaptation and evaluation of the reliability and validity of the standardized questionnaire of celiac disease quality of life (CD-QOL) in the Persian language in southwest Iran. Methods:150 adults with CD were randomly selected from the celiac clinic and Fars Celiac Registry to complete the New Persian version of the CD-QOL questionnaire. Transcultural adaptation of the questionnaire was conducted by a four-step procedure. The internal consistency of the CD-QOL subscales and convergent and discriminant validity were assessed using Cronbach's alpha coefficient and Spearman's correlation, respectively. Construct validity was evaluated by exploratory and confirmatory factor analysis. Results: All domains of the CD-QOL questionnaire had acceptable internal consistency, showing excellent reliability. The scaling success rates for convergent and discriminant validity were also within an acceptable range (87-100%). In the factor analysis model, similar to the original English version, four factors were extracted characterizing the patients' answers (limitations, dysphoria, health concerns, and inadequate treatment). Conclusion: Our Persian version of the CD-QOL questionnaire had high reliability and validity and could be used in clinical practice assessing the CD-specific HRQOL in the Iranian population.

Celiac disease and its treatment negatively impact quality of life, indicating potential need for measurement of disease-specific quality of life domains to inform interdisciplinary intervention. The Celiac Disease Quality of Life Survey (CD-QOL) has been used in clinical research; however, its factor structure has not been confirmed and psychometric properties have not been evaluated in English-speaking adults in the U.S.

(1) Confirm the factor structure of the 20-item English CD-QOL; (2) assess psychometric properties including internal consistency reliability, convergent validity, known groups validity, and incremental validity.

453 adults with self-reported Celiac disease (M_age = 40.57; 88% female; 92% White) completed the CD-QOL and validated measures of generic health-related quality of life (SF-36), gluten-free diet adherence (CDAT), anxiety and depression symptoms (PROMIS), and physical symptoms (CSI) as part of the iCureCeliac^® patient-powered research network.

Confirmatory factor analysis found superior fit for a bifactor structure with one general factor and four group factors. Ancillary bifactor analyses suggest the CD-QOL can be considered primarily unidimensional. Total and three subscale scores demonstrated acceptable internal consistency reliability. Convergent and known groups validity were supported. The CD-QOL demonstrated some incremental validity over the SF-36.

The English CD-QOL can be used as a measure of disease-specific quality of life among adults with Celiac disease in the U.S. Compared to generic instruments, the CD-QOL appears to better capture specific cognitive and affective aspects of living with Celiac disease. Use of a total score is recommended. Its utility as a screening and outcome measurement tool in clinical settings should be examined.

Celiac disease (CD) management is based on a lifelong gluten-free diet (GFD) that affects the quality of life (QoL) of patients with CD. Specific instruments have been used to evaluate this QoL, such as the CD-Questionnaire (CD-Q). This study aimed to translate, validate, and cross-culturally adapt the CD-Q in an Arabic version and then apply it to evaluate the QoL of Moroccan adult patients with CD.

The Moroccan version of the CD-Q (M-CD-Q) was administered to 150 patients with CD, and 112 of them completed it. The reproducibility and reliability of the M-CD-Q were studied by the intraclass coefficient (ICC) and Cronbach's α, respectively. Parametric and nonparametric tests, confirmatory factor analysis, and Spearman correlation were used for the statistical analysis performed by SPSS, and the goodness-of-fit test was determined using SPSS AMOS.

No difficulties were found during the translation and cultural adaptation of the CD-Q. Cronbach's α showed good internal consistency. The retest showed excellent reproducibility (ICC > 0.4). The study of the psychometric properties of the M-CD-Q showed good acceptance, zero ceiling effect, and floor effect. The model fit was good [(root mean square error of approximation = 0.075 (<0.08) and χ2 = 509.04, p < 0.001]. The total scores showed a neutral QoL. This QoL was worse in the worries subscale, which is related to gluten-free products. The GFD did not improve the QoL of the examined samples.

The M-CD-Q is the first reliable and adapted instrument in an Arab country for the evaluation of QoL in patients with CD. CD negatively influences this QoL, especially items related to gluten-free products.

Coeliac disease is an autoimmune disorder triggered by ingesting gluten. It affects approximately 1% of the UK population, but only one in three people is thought to have a diagnosis. Untreated coeliac disease may lead to malnutrition, anaemia, osteoporosis and lymphoma.

The objectives were to define at-risk groups and determine the cost-effectiveness of active case-finding strategies in primary care.

(1) Systematic review of the accuracy of potential diagnostic indicators for coeliac disease. (2) Routine data analysis to develop prediction models for identification of people who may benefit from testing for coeliac disease. (3) Systematic review of the accuracy of diagnostic tests for coeliac disease. (4) Systematic review of the accuracy of genetic tests for coeliac disease (literature search conducted in April 2021). (5) Online survey to identify diagnostic thresholds for testing, starting treatment and referral for biopsy. (6) Economic modelling to identify the cost-effectiveness of different active case-finding strategies, informed by the findings from previous objectives.

For the first systematic review, the following databases were searched from 1997 to April 2021: MEDLINE® (National Library of Medicine, Bethesda, MD, USA), Embase® (Elsevier, Amsterdam, the Netherlands), Cochrane Library, Web of Science™ (Clarivate™, Philadelphia, PA, USA), the World Health Organization International Clinical Trials Registry Platform ( WHO ICTRP ) and the National Institutes of Health Clinical Trials database. For the second systematic review, the following databases were searched from January 1990 to August 2020: MEDLINE, Embase, Cochrane Library, Web of Science, Kleijnen Systematic Reviews ( KSR ) Evidence, WHO ICTRP and the National Institutes of Health Clinical Trials database. For prediction model development, Clinical Practice Research Datalink GOLD, Clinical Practice Research Datalink Aurum and a subcohort of the Avon Longitudinal Study of Parents and Children were used; for estimates for the economic models, Clinical Practice Research Datalink Aurum was used.

For review 1, cohort and case-control studies reporting on a diagnostic indicator in a population with and a population without coeliac disease were eligible. For review 2, diagnostic cohort studies including patients presenting with coeliac disease symptoms who were tested with serological tests for coeliac disease and underwent a duodenal biopsy as reference standard were eligible. In both reviews, risk of bias was assessed using the quality assessment of diagnostic accuracy studies 2 tool. Bivariate random-effects meta-analyses were fitted, in which binomial likelihoods for the numbers of true positives and true negatives were assumed.

People with dermatitis herpetiformis, a family history of coeliac disease, migraine, anaemia, type 1 diabetes, osteoporosis or chronic liver disease are 1.5-2 times more likely than the general population to have coeliac disease; individual gastrointestinal symptoms were not useful for identifying coeliac disease. For children, women and men, prediction models included 24, 24 and 21 indicators of coeliac disease, respectively. The models showed good discrimination between patients with and patients without coeliac disease, but performed less well when externally validated. Serological tests were found to have good diagnostic accuracy for coeliac disease. Immunoglobulin A tissue transglutaminase had the highest sensitivity and endomysial antibody the highest specificity. There was little improvement when tests were used in combination. Survey respondents (n = 472) wanted to be 66% certain of the diagnosis from a blood test before starting a gluten-free diet if symptomatic, and 90% certain if asymptomatic. Cost-effectiveness analyses found that, among adults, and using serological testing alone, immunoglobulin A tissue transglutaminase was most cost-effective at a 1% pre-test probability (equivalent to population screening). Strategies using immunoglobulin A endomysial antibody plus human leucocyte antigen or human leucocyte antigen plus immunoglobulin A tissue transglutaminase with any pre-test probability had similar cost-effectiveness results, which were also similar to the cost-effectiveness results of immunoglobulin A tissue transglutaminase at a 1% pre-test probability. The most practical alternative for implementation within the NHS is likely to be a combination of human leucocyte antigen and immunoglobulin A tissue transglutaminase testing among those with a pre-test probability above 1.5%. Among children, the most cost-effective strategy was a 10% pre-test probability with human leucocyte antigen plus immunoglobulin A tissue transglutaminase, but there was uncertainty around the most cost-effective pre-test probability. There was substantial uncertainty in economic model results, which means that there would be great value in conducting further research.

The interpretation of meta-analyses was limited by the substantial heterogeneity between the included studies, and most included studies were judged to be at high risk of bias. The main limitations of the prediction models were that we were restricted to diagnostic indicators that were recorded by general practitioners and that, because coeliac disease is underdiagnosed, it is also under-reported in health-care data. The cost-effectiveness model is a simplification of coeliac disease and modelled an average cohort rather than individuals. Evidence was weak on the probability of routine coeliac disease diagnosis, the accuracy of serological and genetic tests and the utility of a gluten-free diet.

Population screening with immunoglobulin A tissue transglutaminase (1% pre-test probability) and of immunoglobulin A endomysial antibody followed by human leucocyte antigen testing or human leucocyte antigen testing followed by immunoglobulin A tissue transglutaminase with any pre-test probability appear to have similar cost-effectiveness results. As decisions to implement population screening cannot be made based on our economic analysis alone, and given the practical challenges of identifying patients with higher pre-test probabilities, we recommend that human leucocyte antigen combined with immunoglobulin A tissue transglutaminase testing should be considered for adults with at least a 1.5% pre-test probability of coeliac disease, equivalent to having at least one predictor. A more targeted strategy of 10% pre-test probability is recommended for children (e.g. children with anaemia).

Future work should consider whether or not population-based screening for coeliac disease could meet the UK National Screening Committee criteria and whether or not it necessitates a long-term randomised controlled trial of screening strategies. Large prospective cohort studies in which all participants receive accurate tests for coeliac disease are needed.

This study is registered as PROSPERO CRD42019115506 and CRD42020170766.

This project was funded by the National Institute for Health and Care Research ( NIHR ) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 26, No. 44. See the NIHR Journals Library website for further project information.

Adequate follow-up in celiac disease is important to improve dietary compliance and treat disease-related symptoms and possible complications. However, data on the follow-up of celiac children is scarce. We aimed to assess current pediatric celiac follow-up practices across Europe. Pediatricians and pediatric gastroenterologists from 35 countries in Europe, Israel, Turkey, and Russia completed an anonymous survey which comprised a 52-item questionnaire developed by the ESPGHAN Special Interest Group on Celiac Disease. A total of 911 physicians, the majority of whom exclusively worked in pediatric care (83%) and academic institutions (60%), completed the questionnaire. Mean age and mean experience with celiac care were 48.7 years (± 10.6) and 15.7 years (± 9.9), respectively. The vast majority (≥ 92%) always assessed anthropometry, dietary adherence, and tissue-transglutaminase IgA-antibodies at every visit, with the first visit being between 3 and 6 months after diagnosis. Other parameters (% always tested) were as follows: complete blood count (60%), iron status (48%), liver enzymes (42%), thyroid function (38%), and vitamin D (26%). Quality of life was never assessed by 35% of the responding physicians. Transition to adult care was mostly completed via a written transition report (37%) or no formal transition at all (27%).Conclusions: Follow-up of celiac children and adolescents in Europe may be improved, especially regarding a more rational use of (laboratory) tests, dietary and QoL assessment, and transition to adult care. Evidence-based advice from international scientific societies is needed. What is Known: • Follow-up in celiac disease is important to treat disease-related symptoms, improve dietary compliance, and prevent possible complications. • There is a lack of consensus about the appropriate follow-up. What is New: • Almost all European physicians assess anthropometry, tissue-transglutaminase IgA-antibodies, and dietary adherence at every visit, but there are large variations in other follow-up aspects. • Follow-up could be improved by a more rational use of (laboratory) tests, increased intention to dietary compliance, and quality of life together with transition programs to adult care.

Gluten-free diet (GFD) is a lonely lifelong management for patients with celiac disease (CD), which may affect their quality of life (QoL). This can be evaluated by generic or specific instruments. We aimed to translate, validate and cross-culturally adapt a specific-CD instrument to Moroccan-Arabic version (M-CD-DUX), and then apply it to evaluate the QoL of Moroccan celiac children.

CD-DUX instrument was translated and culturally adapted, and preliminarily evaluated on 15 children and their proxies. The reproducibility and internal consistency of M-CD-DUX were measured by intra-class coefficient (ICC) and Cronbach α tests respectively. The statistical analysis of data consisted was conducted using SPSS, and the Goodness-of-Fit test was measured by SPSS AMOS.

The reliability of M-CD-DUX instrument showed a good internal consistency and reproducibility. The psychometric properties of M-CD-DUX were acceptable, and the instrument's Model fit was good [(Root Mean Square Error of Approximation = 0.062; χ2 = 603.08, p < 0.001]. M-CD-DUX was completed by 52 celiac children and their proxies. It showed a worse QoL for all items and subscales, and no difference was observed between the QoL of celiac children already under GFD and those recently diagnosed.

M-CD-DUX was the first reliable and adapted instrument used to evaluate the QoL of celiac children in an Arab country, emphasizing a negative impact of CD on their QoL.

Therefore, improving their QoL requires to make gluten-free products available to them at an appropriate price as well as a good integration into society.

When seeking a romantic partner, individuals with celiac disease (CD) must navigate challenging social situations. We aimed to investigate dating-related behaviors in adults with CD.

A total of 11,884 affiliates of the Celiac Disease Center at Columbia University were invited to participate in an online survey. Adults (≥ 18 years) with biopsy-diagnosed CD were included. Among the 5,249 who opened the email, 538 fully completed the survey (10.2%). The survey included a CD-specific dating attitudes/behaviors questionnaire, a Social Anxiety Questionnaire (SAQ), a CD-specific quality of life instrument (CD-QOL), and a CD Food Attitudes and Behaviors scale (CD-FAB).

Respondents were primarily female (86.8%) and the plurality (24.4%) was in the 23-35 year age range. 44.3% had dated with CD, and among them, 68.4% reported that CD had a major/moderate impact on their dating life. A major/moderate impact was more commonly reported among females (69.3%, p  < 0.001), 23-35-year-olds (77.7%, p = 0.015), those with a household income < $50 K (81.7%, p = 0.019), and those with a lower CD-QOL score (50.5 vs. 73.4, p = 0.002). While on dates, 39.3% were uncomfortable explaining precautions to waiters, 28.2% engaged in riskier eating behaviors, and 7.5% intentionally consumed gluten. 39.0% of all participants were hesitant to kiss their partner because of CD; females more so than males (41.1% vs. 22.7%, p = 0.005).

The majority of participants felt that CD had a major/moderate impact on their dating life. This impact may result in hesitation toward dating and kissing, decreased QOL, greater social anxiety, and less adaptive eating attitudes and behaviors. CD and the need to adhere to a gluten free diet have a major impact on dating and intimacy.

A gluten-free diet (GFD), which is the only treatment for celiac disease (CeD), is challenging and associated with higher levels of anxiety, disordered eating, and lower quality of life (QOL). We examined various demographic and health factors associated with social anxiety, eating attitudes and behaviors, and QOL. Demographics and health characteristics, QOL, eating attitudes and behaviors, and social anxiety of adults with CeD were acquired using validated measures. The mean scores for QOL, SAQ, and CDFAB were compared across various demographic groups using the Z statistical test. The mean QOL score was 57.8, which is in the moderate range. The social anxiety mean scores were high: 78.82, with 9% meeting the clinical cutoff for social anxiety disorder. Those on a GFD for a short duration had significantly higher SAQ scores (worse anxiety), higher CDFAB scores (worse eating attitudes and behavior), and lower QOL scores. Those aged 23-35 years had lower QOL scores (p < 0.003) and higher SAQ scores (p < 0.003). Being single (p < 0.001) and female (p = 0.026) were associated with higher SAQ scores. These findings suggest that the development of targeted interventions to maximize QOL and healthy eating behaviors as well as to minimize anxiety is imperative for some adults with CeD.

Individuals living with coeliac disease generally experience a remission of symptoms after adopting the gluten-free diet but often report substantial treatment burden and ongoing quality of life issues. Psychosocial factors have been suggested to play a significant role in post-diagnosis quality of life but have yet to be systematically reviewed.

To review the evidence for psychosocial factors associated with quality of life in adult coeliac disease cohorts.

Studies were identified via systematic searches of eight databases (MEDLINE, Embase, Emcare, PsycINFO, Ovid Nursing, CINAHL, Informit Health Collection, Cochrane Library) in May 2019.

Fourteen studies were included involving 3372 participants (80.2% female, mean age = 46.4 years). Symptoms of depression and anxiety were the most examined psychosocial factors across all studies. Quality of life was differentially associated with psychological distress, illness perceptions, coping, and attitudes/behaviours regarding food and the gluten-free diet.

Several psychosocial factors are associated with quality of life in adults living with coeliac disease. Current evidence suggests these factors are interrelated and may influence quality of life directly, via reduced psychological well-being, and indirectly, via reduced adherence to the gluten-free diet. Future research is needed to examine these processes concurrently, with the aim of elucidating the psychosocial mechanisms underlying post-diagnosis well-being and identifying potential targets for psychosocial intervention.

The purpose of the pilot MOVE-C study was to examine the effects of a 12-week high-intensity interval training (HIIT) plus lifestyle education program on quality of life (QoL), behavioural and psychosocial outcomes among inactive adults with coeliac disease.

This study used a 3 (time: baseline, immediately post and three months post) × 2 (group: experimental versus waitlist control) mixed design. After completing baseline testing, 41 participants were randomised to one of two groups: HIIT + or waitlist control (WLC). The HIIT + intervention involved twice-weekly HIIT, during which participants progressed to 14 × 30 s intervals (90% heart rate max; HRmax), with 2-minute recovery (50% HRmax). The HIIT + intervention also included six bi-weekly education sessions.

Participants in HIIT + reported significant improvements in QoL and exercise behaviour immediately post-intervention, and this was sustained three months post-intervention, whereas no changes in QoL nor exercise behaviour were reported in WLC. Improvements were also reported among HIIT + immediately after the intervention for gastrointestinal symptoms and self-compassion. All participants reported significant improvements in adherence to a GFD immediately post-intervention.

Findings from this pilot study provide preliminary evidence that a tailored exercise and lifestyle intervention can lead to improved QoL, exercise behaviour, gastrointestinal symptoms and self-compassion among inactive adults with coeliac disease.

Little is known about celiac disease (CeD) diagnosis and management in China.

This pilot aimed to be the first study to describe, quantitatively and qualitatively, how individuals living in China navigate CeD and the gluten-free diet (GFD).

Participants were 13 adults and four parents of children with reported CeD, recruited from 11 mainland China cities via an online GFD support group. CeD-specific quality of life (CD-QOL and CD-PQOL) and diet adherence (CDAT) were assessed. In-depth interviews addressed experiences with CeD and the GFD.

Six of 17 participants reported biopsy- or serology-confirmed CeD. The mean (SD) adult CDAT score was 15.2 (3.6), > 13 indicating inadequate GFD adherence. The mean adult CD-QOL score was 62.1 (24.1) out of 100, in the "medium" to "good" range. Results were similar in children. Major interview themes included: (1) a challenging journey to obtain diagnosis; (2) social and structural barriers to maintaining the GFD; and (3) reliance on self in management of CeD.

Obtaining a diagnosis, maintaining a GFD, and living with CeD can be extremely challenging in mainland China. Results suggest an urgent need for CeD-specific education and Asian-adapted GFD guidance for both healthcare practitioners and patients.

Considering the importance of having a celiac disease-specific measure of the quality of life (QOL) in Persian, the present study aimed to translate the celiac disease quality of life questionnaire (CDQOL) into Persian and evaluate its psychometric properties.

In this cross-sectional study, the Forward-Backward translation method was used. The content validation ratio (CVR) and the content validity index (CVI) were used for content validity assessment. The construct validity was assessed by exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) on 220 celiac patients who were selected randomly from the celiac disease (CD) registry database. The correlations between the result of the Persian version of CDQOL (PCDQOL), self-rated QOL, and short form-36 (SF36) were analyzed using the Pearson correlation test. The internal consistency and test-retest reliability were measured through Cronbach's alpha and intraclass correlation coefficient (ICC).

In the present study, 220 celiac patients with a mean age of 35.54 ± 10.29 years participated. The mean CVI, CVR, and impact score of PCDQOL were 0.98, 0.96, and 4.82 respectively. Using EFA, four factors have extracted that had a good fit in CFA (Chi-square/DF = 1.74, RMSEA: 0.08, and CFI: 0.90, and NFI: 0.90). The results showed that there was a moderate to high correlation between PCDQOL, SF36 (r: 0.587, p = 0.02), and self-rated QOL (r: 0.64, p < 0.001). The questionnaire had high internal consistency (Cronbach alpha: 0.93) and test-retest reliability (ICC: 0.96 [0.86-0.99]).

The PCDQOL questionnaire could be used by physicians and nutritionists to assess HRQOL in celiac patients in Iran.

Pediatric traumatic brain injury (TBI) may cause a wide range of symptoms, which can negatively affect the quality of life of patients and their entire families. No internationally and simultaneously developed disease-specific instrument exists for assessing pediatric health-related quality of life (HRQoL) after TBI. The aim of the current project is to provide original material from small group interviews with individuals after TBI concerning what they state is relevant for their HRQoL. This material is required for a further study to generate items for age-adapted questionnaires assessing the TBI-specific HRQoL of children and adolescents (C&A): the QOLIBRI-Kiddy/Kid/Ado and proxy versions (Quality of Life after Brain Injury-Kiddy/Kids/Adolescents/Proxy) for individuals aged 6-17 and their parents.

The semi-structured interviews were conducted with separate small groups of C&A (n = 19), divided into three age groups (5-7y, 8-12y, 13-17y), after mild, moderate, and severe TBI, and with groups of the corresponding parents (n = 26). All interviews lasted for about 60 minutes, were recorded and transcribed verbatim. The statements were investigated by qualitative analyses and sorted into categories relevant to the HRQoL of C&A after TBI. Only descriptive group comparisons but no pairwise comparisons between children and corresponding parents were performed.

The analyses led to 32 subcategories, which were assigned to six main theoretically based HRQoL categories. Many agreements exist between the C&A's and parents' perspectives within the main categories, however their focus on HRQoL differs, especially concerning age-related contents. Parents of the youngest participant group already focus on topics such as autonomy, whereas this only becomes relevant for C&A from the age of eight years on. Interestingly, even 5-year-old children were able to discuss their HRQoL, which indicates the importance of a self-report instrument.

Results obtained from this qualitative study identify the content of the HRQoL dimensions important for C&A after TBI and their parents. Both, differences and similarities in the children's and the parents' views were investigated, to get a first insight in valid dimensions for the prospective questionnaires to be developed. In a future study, items for the questionnaires will be deducted from the small group interview material and psychometrically tested in C&A after TBI from Germany. This study will address whether all statements were assigned to the suitable dimensions and whether differences between C&A and parents persist.

Background: Whether the diagnostic approach for celiac disease (CD) can really affect quality of life (QoL) and dietary compliance remains controversial. Aims: This study aimed to evaluate QoL and compliance to gluten-free diet (GFD) in adolescents/young adults diagnosed with CD through a screening strategy during childhood compared to age-matched CD patients diagnosed by case-finding and to assess whether follow-up at a referral center for CD influences compliance and QoL. Materials and Methods: Thirty-seven CD patients who were diagnosed by screening programs (SC-group) and 38 age-matched CD patients diagnosed due to symptoms (CF-group) were enrolled. Patients were asked to answer a questionnaire on QoL, dietary compliance, and follow-up care for CD. Results: Twenty-nine patients of the SC-group (median age 18.0 years, interquartile range [IQR] 16.0-19.0) and 31 patients of the CF-group (median age 17.0 years, IQR 15.5-18.0) completed the questionnaire. No significant difference relating adherence to the GFD and QoL was shown between the two groups. The majority (93.5%) of CF-group regularly had annual follow-up at a referral center compared to 37.9% of the SC-group (p < 0.001). Conclusion: The diagnostic strategy does not seem to impact QoL and dietary compliance. However, implementation of follow-up might still be necessary for patients identified through screening.

Lockdown and restricted mobility due to the pandemic of corona virus disease  2019 (COVID-19) has severely affected the continuity of healthcare of patients with acute and chronic diseases. We evaluated the impact of COVID-19 on the adherence to gluten-free diet (GFD), symptom control, and quality of life (QOL) in patients with celiac disease (CeD).

A questionnaire, consisting of both ad-hoc and validated questions, was created after review of literature, group discussions, and expert meetings. Standardized questionnaires namely CeD adherence test (CDAT), celiac symptom index score, and CeD-related QOL were used. The web-based questionnaire was sent to 3130 patients via social media and 452 responses (14.4%) were received. Also, additional 68 patients (not available on any social media application) were interviewed telephonically by a trained dietitian.

Overall, 505 patients (females: 318; mean age: 24.1±14.2 years) were included. While only 6.7% (n = 34) had poor compliance to GFD (CDAT > 17) before COVID-19 pandemic, it almost doubled to 12.6% (n = 64) during the COVID-19 pandemic times (p = 0.02). Furthermore, 4.9% (n = 25) of patients were diagnosed contacting  COVID-19. Interestingly, 73.2% (n = 370) patients preferred online appointment than physical appointment. Most common difficulties faced during lockdown period were high delivery charges for getting gluten-free (GF) food at home (54.4%), increased prices of regular GF food (43.1%), and travelling long distance to arrange GF food (44.9%).

The COVID-19 pandemic has substantially affected the adherence, symptom control, and QOL in patients with CeD, attributable to unavailability, shortage of money, and heightened cost of GF food. The pandemic has offered an opportunity to practice teleconsultation approach for patients with CeD.

a gluten-free diet (GFD) is the treatment for celiac disease (CD), with adherence oscillating between 42 % and 91 %. The purpose of this study was to assess adherence to GFD and its relation to quality of life in Chilean celiac patients.

three surveys were performed on-line: sociodemographic-health status, adherence to GFD and quality of life.

forty-eight per cent of respondents reported an excellent adherence to GFD and 49 % a good quality of life.

adherence to GFD is low among Chilean celiac patients.

Measurements of health-related quality of life (HRQoL) among celiac disease patients using a validated questionnaire have been lacking in Slovenia. This study aims to measure HRQoL in celiac disease (CD) patients using EQ-5D internationally validated questionnaire and comparing it to the HRQoL of the general population.

In this cross sectional analysis all of the approximately 2000 members of the Slovenian Celiac Society were invited to take part. We used a 3 step approach for recruitment and data collection. HRQoL was evaluated through the EuroQoL EQ-5D-5L instrument (Slovenian version) and analysed using the ordinal logistic regression.

Out of 321 patients who gave their consent, 247 celiac patients were included in the study (77%). 68% of the participants were female and 53% of them lived in an urban setting. Most patients originated from North-East Slovenia, whereas approximately 30% of patients came from other Slovenian regions. The EQ-5D respondents' self-reported health status at the time of the study show that most patients have slight or no problems when living with CD. The duration of the gluten-free diet, academic education and rare (< 1 × year) doctor visits affect EQ-5D in a positive way. On the other hand, higher age and chronic rheumatic disease were negatively associated with EQ-5D also when compared to the general population.

This is the first Slovenian study to measure the HRQoL of Slovenian CD patients, using an internationally validated questionnaire. The results of our study show that HRQoL is slightly impaired among Slovenian patients with CD. Clinical characteristics are better determinants of their HRQoL than socio-demographic factors. Greater awareness of the impact of CD on patients' HRQoL would improve the holistic management of CD patients.

Early detection of celiac disease could theoretically prevent most of the disease-associated complications, but long-term effects of this approach are unclear.

To investigate features at diagnosis and adulthood health in celiac disease patients diagnosed in early childhood in 1965-2014.

Medical data on 978 pediatric patients were collected and study questionnaires sent to 559 adult patients who were diagnosed in childhood. Results were compared between patients diagnosed in early (≤3.0 years) and later (3.1-17.9 years) childhood.

Early diagnosed patients (n=131) had more often total villous atrophy (37% vs 25%, p=0.001), gastrointestinal presentation (61% vs 47%, p<0.001), growth disturbances (70% vs 32%, p=0.001) and severe symptoms (30% vs 9%, p<0.001) and were less often screen-detected (10% vs 27%, p<0.001) at diagnosis than those diagnosed later (n=847). Among 239 adult responders, early diagnosed patients (n=36) had fewer comorbidities (33% vs 53%, p=0.034) but considered their health less often good/excellent (69% vs 84%, p=0.029). The groups were comparable in current age, dietary adherence, symptoms and health-related quality of life.

Despite more severe initial presentation, the long-term health in early diagnosed patients was mostly comparable or even better to those diagnosed later in childhood. Poorer self-perceived health suggests a need for support during the transition to adulthood care.

Coronavirus Disease 2019 (COVID-19) causes severe complications and deaths all over the world. COVID-19 also has indirect effects from the lockdown and the possible lack of food. We aimed to evaluate the perception of this in Celiac Disease (CeD) patients who require a lifelong gluten-free diet as a therapy.

We invited by e-mail CeD adult patients from the University of Salerno (Campania, South Italy) and the University of Padua (Veneto, North Italy) to answer an ad hoc COVID-19 survey.

We sent the web survey to 651 email addresses and we received 276 answers (42,4%). CeD patients did not feel more vulnerable because they had CeD (not at all 56.6%) and they did not worry much about the possible shortness of gluten-free food during the epidemic (not at all 48.5%). The most worried were the elderly patients, patients with other comorbidities and females. Finally, CeD patients were happy with remote consultations and explicitly asked to have them.

The COVID-19 pandemic has impacted a proportion of patients with CeD; in particular, women, elderly patients, patients with other comorbidities. COVID-19, although a challenging experience from the medical and the psychological point of view, has offered an opportunity to practice, on a large-scale, a remote consultation approach for CeD healthcare.