Exploring factors influencing quality of life variability among individuals with coeliac disease: an online survey.

OBJECTIVE: 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. DESIGN: 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. RESULTS: 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. CONCLUSION: 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.

Barriers at various levels of human ecosystem for maintaining adherence to gluten free diet in adult patients with celiac disease.

INTRODUCTION: While lifelong and strict adherence to gluten-free diet (GFD) is essential for the successful treatment of celiac disease (CeD), only 30-50% of patients are able to maintain a good adherence to GFD. We determined factors influencing the adherence to GFD at various ecological levels including intra-personal, inter-personal, organizational, community and system-based levels in adult patients with CeD. METHODS: A questionnaire to assess the adherence was developed and it was administered in the CeD clinic to patients with CeD on GFD for >1 year. Adherence to GFD was assessed in a subset of patients (n = 320) using Celiac Disease Adherence Test (CDAT). RESULTS: Overall, 978 patients [median age: 29 years; females: 592] with CeD on GFD were recruited. They reported many barriers to adherence to GFD including intra-personal barriers such as lack of knowledge about GFD (19%), inadequate financial resources (27.2%) and lack of self-motivation/confidence (55.3%); inter-personal barriers such as intake of gluten-containing food upon forceful insistence of friends/family (23.4%); organizational barriers such as high cost (70.8%) and non-availability of GF-food products (48.6%); community-based barriers like consumption of gluten-containing food at religious occasions/festivals (11.1%) and social occasions (27.2%); and system-based barriers such as non-referral to dietitian for counseling (21.9%). As per CDAT, 204 (63.7%), 73(22.8%) and 43(13.4%) patients had good, average, and poor adherence to GFD, respectively. On multivariable analysis, occasional consumption of gluten, non-availability of GF-food while dining out and coercing by family and friends for consumption of GC-food were found to have highest odds for poor adherence to GFD. CONCLUSIONS: Non-referral to a dietitian for counseling, irregular follow-up visits, unavailability of flour mill, non-supportive family/friends, high cost and limited availability of GF-food are the most common barriers to adherence to GFD. There is a need to create infrastructure and develop strategies to overcome these diverse barriers at various levels of ecosystem and thereby facilitate better adherence to GFD.

Celiac Disease Dietary Adherence on the Rural-Urban Continuum.

Poor adherence to a gluten-free diet for those with celiac disease is a well-established risk factor, leading to gastrointestinal symptoms, malabsorption of nutrients, and psychiatric complications. Previous studies have shown that those outside urban areas encounter unique barriers to dietary adherence and are less likely to engage in health management behaviors than those in urban regions. This study aimed to examine the relationship between gluten-free dietary adherence and individual, relationship, and community factors, including the geographic location of residence on the rural-urban continuum, for 253 adults with celiac disease living in the United States. Those with celiac disease residing in urban regions had significantly better dietary adherence than those residing in nonurban areas (p < 0.05). Those living in nonurban communities had, on average, poor enough adherence scores to suggest ongoing intestinal damage from gluten consumption. Geographic location, age, years since diagnosis, and annual income significantly predicted compliance with a gluten-free diet for those with celiac disease, accounting for nearly 20% of the variance. Those living outside urban areas with a lower income, younger age, and more recent diagnosis of celiac disease had the worst dietary adherence, placing them at the most risk for ongoing disease progression and complications.

Experiences and difficulties for primary caretakers of children with celiac disease - A qualitative study.

BACKGROUND: The purpose of this study was to understand the experiences of primary caretakers (PCTs) with a child diagnosed with celiac disease (CeD). There is paucity of research in understanding the experiences of PCTs of children with CeD in India. METHODS: Purposive sampling was used to select PCTs of CeD-affected children from a tertiary hospital in New Delhi. Ten PCTs took part in the investigation. To gather the data, semi-structured interviews were held with participants. Hindi was used to administer the interviews. RESULTS: The current study focused on the difficulties and worries PCTs experience in managing CeD. The main themes and sub-themes that emerged from the data were diagnosis of CeD (misdiagnosis of CeD, late diagnosis of CeD, feelings at the time of diagnosis, help from a doctor/nutritionist at the time of diagnosis); characteristics of CeD (CeD as a new disease, CeD as an allergy); attitude towards wheat (wheat as a poison, ignorance regarding negative effect of wheat); influence of significant others (making fun of the child, queries from others are a source of worry, non-acceptance of celiac disease by others and pressure to give gluten to the child); issues in following gluten-free diet (GFD) (fear of cross-contamination, distrust on GFD available outside home, GFD is expensive, making GFD is difficult, joint family, non-adherence to GFD, making non-GFD along with GFD); effect of CeD (financial effect of CeD, effect on physical and mental health of the child and PCT, effect on social life, change in family dynamics, eating restrictions); management of CeD (GFD for the whole family to manage CeD, family support to manage CeD, adhering to GFD, early diagnosis); and concerns (future marital concern for the child, cure of CeD, proper physical growth). CONCLUSION: The current study gave an understanding of how PCTs dealt with a child's CeD. The difficulties and worries of caretakers should be taken into consideration and appropriate recommendations made to lessen the strain of managing the child's CeD and the daily obstacles associated with it.

Celiac disease and COVID-19 in adults: A systematic review.

BACKGROUND: Celiac disease (CD) is an autoimmune disease affecting around 1.4% of the total human population. Local and systemic manifestations are described in CD. Viral infections seem to trigger CD or even have a worse outcome in CD patients. The evidence on the relationship between CD and coronavirus disease (COVID-19) is limited. To evaluate existing evidence on the association between CD and COVID-19, we conducted the current systematic review. METHODS: We systematically searched Pubmed, Scopus, and Embase databases to find articles that reported risks or outcomes of COVID-19 in CD patients. Papers in any language published up to November 17, 2022, were evaluated for possible inclusion. The results were analyzed qualitatively. This study is registered with PROSPERO(CRD42022327380). RESULTS: We identified 509 studies by searching databases; 14 reported data on the risk or outcome of COVID-19 in CD patients and were eligible for qualitative synthesis. We found that the relative risk of acquiring COVID-19 in CD patients may be lower than in the general population. Approximately 90% of infected patients were treated as an outpatient, and 10% were hospitalized. GFD adherence and Health-related quality of life (HR-QOL) were more or less the same before and during the pandemic. The gluten-free products (GFP) supply seems to be plunged during the pandemic. The data on the psychological effects of the pandemic were conflicting. CONCLUSION: The risk of acquiring COVID-19 in CD patients is lower than in the general population. Females were more likely to be infected by COVID-19, and the most common comorbidity in infected patients was a chronic lower respiratory disease; around 10% of infected patients needed hospitalization, GFD adherence, and HR-QOL was more or less the same before and during the pandemic, depression, anxiety, and stress levels of patients varied among studies. Patients had more difficulties accessing GFPs based on limited data.

An interpretative phenomenological analysis of the development and maintenance of gluten-related distress and unhelpful eating and lifestyle patterns in coeliac disease.

OBJECTIVE: Estimates indicate that individuals with coeliac disease are more likely to experience disordered eating and impaired well-being than healthy controls, but less is known about the mechanisms by which these factors are related. The aim of this study was to understand experiences of coeliac disease and influence on subsequent unhelpful eating and lifestyle patterns. METHODS: An online focus group discussion, hosted through a synchronous chat log, with adults living with coeliac disease was conducted. Seven individuals discussed their condition, lifestyle, and dietary changes post-diagnosis. Discussions were analysed using an interpretative phenomenological approach, a technique that enables new practical or research insight into health conditions based upon participants' experiences of their condition. RESULTS: Three themes were identified: (i) Nobody knew what was happening to my body; (ii) I am so afraid of being 'glutened' that it is central to my thoughts and anxieties; and (iii) I am frightened but I can keep myself safe by being a 'good' coeliac. These appeared to contribute to participant distress or unhelpful eating or lifestyle behaviours. Participants appeared to develop severe anxiety around gluten, and implausible beliefs around diet and lifestyle management that appear to initiate and maintain unhelpful eating behaviours and maladaptive lifestyles changes, that contribute to distress. CONCLUSIONS: Extending current knowledge, we propose a novel cognitive perspective on the development and maintenance of disordered eating in coeliac disease. Implications for how health providers can better support individuals with coeliac disease, and the role of dietary management, anxiety, and gastrointestinal symptoms in the development of disordered eating are discussed.

The Gluten-Free Diet for Celiac Disease and Beyond.

The gluten-free diet (GFD) has gained popularity beyond its main medical indication as the treatment for gluten-induced immune-mediated disorders such as celiac disease (CD), dermatitis herpetiformis, gluten ataxia, wheat allergy, and non-celiac gluten sensitivity. However, the diet carries some disadvantages such as elevated costs, nutritional deficiencies, and social and psychological barriers. The present work aims to review indications, proven benefits, and adverse events of a gluten-free diet. Close follow-up with patients following the diet is recommended. More data is needed to assess the effectiveness of the diet in managing mental and cognitive disorders and to establish a connection between the brain and gluten.

Association between Self-Reported Gluten Avoidance and Irritable Bowel Syndrome: Findings of the NutriNet-Santé Study.

Self-management of irritable bowel syndrome (IBS) is increasingly focusing on exclusion diets. In particular; patients are showing a significant interest in the gluten-free diet for the treatment of IBS. However; the lack of scientific evidence prevents the establishment of clear dietary guidelines and attention is needed as dietary restriction can lead to potentially adverse effects. This cross-sectional study aims to explore the practice of gluten avoidance in participants identified with IBS in a large cohort of non-celiac French adults. The population included 15,103 participants of the NutriNet-Santé study who completed a functional gastrointestinal disorder questionnaire based on the Rome III criteria to identify IBS in 2013 and a food avoidance questionnaire in 2016. Data on diet and anthropometric and sociodemographic characteristics were collected. Multivariate logistic regression models were used to compare the avoidance of gluten between IBS and non-IBS participants. Participants were mainly women (73.4%) and the mean age in this population was 55.8 ± 13.2 years. Among these individuals, 804 (5.4%) participants were identified as IBS cases. Among them, the prevalence of gluten avoidance was estimated at 14.8%, of which 3.0% reported total avoidance; versus 8.8% and 1.6% in non-IBS participants. After adjustments; gluten avoidance was higher in IBS participants compared to their non-IBS counterparts: (OR = 1.86; 95%CI = 1.21, 2.85) for total and (OR = 1.71; 95%CI = 1.36, 2.14) for partial avoidance. Participants identified with IBS were more associated with gluten avoidance than non-IBS participants. Further studies are needed to explore the long-term consequences of dietary interventions and to provide consistent dietary guidance connected to patient perception.

Pandemic Effects and Gluten-Free Diet: An Adherence and Mental Health Problem.

The COVID-19 pandemic has been present for many months, influencing diets such as the gluten-free diet (GFD), which implies daily challenges even in non-pandemic conditions. Persons following the GFD were invited to answer online ad hoc and validated questionnaires characterizing self-perceptions of the pandemic, current clinical condition, dietary characteristics, adherence to GFD, anxiety, and depression. Of 331 participants, 87% experienced shortage and higher cost of food and 14.8% lost their jobs. Symptoms increased in 29% and 36.6% failed to obtain medical help. Although 52.3% increased food preparation at home and purchased alternative foodstuffs, 53.8% had consumed gluten-containing foods. The Health Eating Index was intermediate/"needs improvement" (mean 65.6 ± 13.3 points); in 49.9% (perception) and 44.4% (questionnaire), adherence was "bad". Anxiety and depression scores were above the cutoff in 28% and 40.4%, respectively. Adherence and mental health were strongly related. The likelihood of poor adherence was 2.3 times higher (p < 0.004) in participants declaring that pandemic altered GFD. Those suffering depressive symptoms were 1.3 times more likely to have poor adherence (p < 0.000). Depression and faulty GFD (mandatory for treatment) appear, affecting a high proportion of participants, suggesting that support measures aimed at these aspects would help improve the health condition of people that maintain GFD. Comparisons of data currently appearing in the literature available should be cautious because not only cultural aspects but conditions and timing of data collection are most variable.

Dietary gluten avoidance in Canada: a cross-sectional study using survey data.

BACKGROUND: A gluten-free diet (GFD) is required for the management of some conditions, whereas some Canadians may follow a GFD for discretionary reasons. We sought to estimate the prevalence of Canadians who adhere to a GFD, identify factors associated with adherence to a GFD, and describe and compare the location of food preparation and consumption for those who follow a GFD, those who report no dietary avoidances and those reporting other dietary avoidances. METHODS: We used cross-sectional data from the 2015 Canadian Community Health Survey - Nutrition (n = 20 487). Demographic variables included sex, age group, ethnicity, highest level of household education and income adequacy. The relations between respondent characteristics and report of a GFD were estimated using logistic regression. Respondents were further categorized as avoiding dietary gluten, other dietary avoidances and no dietary avoidances. RESULTS: An estimated 1.9% of Canadians follow a GFD. Women had 2 times higher odds (odds ratio [OR] 2.08, 95% confidence interval [CI] 1.32 to 3.27) of reporting a GFD than men. After adjustment for income adequacy, household education, sex, age group and ethnicity, residents of Ontario and Quebec had about half the odds (OR 0.52, 95% CI 0.31 to 0.87, and OR 0.55, 95% CI 0.32 to 0.94, respectively) of reporting a GFD compared with residents of Atlantic Canada. Canadians who followed a GFD consumed significantly fewer calories from foods prepared at restaurants than both Canadians who reported no dietary avoidances and those who reported dietary avoidances other than gluten. Canadians following a GFD reported that 2.0% (95% CI 1.1% to 2.9%) of their daily kilocalories were from foods prepared at restaurants, compared with 6.7% (95% CI 5.4% to 7.9%) for Canadians reporting 1 or more dietary avoidances other than gluten, and 6.4% (95% CI 6.0% to 6.9%) for those reporting no avoidances. INTERPRETATION: The estimated 1.9% prevalence of dietary gluten avoidance likely includes individuals with celiac disease, wheat allergies and nonceliac gluten sensitivity, as well as individuals excluding gluten in the management of irritable bowel syndrome or for reasons related to dietary trends. Canadians eating GFDs consume fewer daily calories from restaurant-prepared foods than other Canadians, which may have social implications.

Gluten-Free Diet: Nutritional Strategies to Improve Eating Habits in Children with Celiac Disease: A Prospective, Single-arm Intervention Study.

BACKGROUND: Elimination of gluten-containing cereals and consumption of ultra-processed gluten-free foods might cause an unbalanced diet, deficient in fiber and rich in sugar and fat, circumstances that may predispose celiac children to chronic constipation. AIM: to evaluate if counseling with a registered dietitian (RD) was capable of improving eating and bowel habits in a celiac pediatric population. METHODS: Dietetic, lipid profile and stool modifications were analyzed, comparing baseline assessments with those twelve months after receiving heathy eating and nutrition education sessions. At both time points, 3-day food records, a bowel habit record and a lipid panel were conducted. Calculated relative intake of macro- and micro-nutrients were compared with current recommendations by the European Food Safety Authority (EFSA). Student's paired t-test, McNemar test, Mandasky test and Pearson correlation tests were used. RESULTS: Seventy-two subjects (58.3% girls) with a mean (standard deviation (SD)) age of 10.2 (3.4) years were included. Baseline diets were imbalanced in macronutrient composition. Significant improvements were observed in their compliance with dietary reference values (DRVs), where 50% of the subjects met fat requirements after the education and 67% and 49% with those of carbohydrates and fiber, respectively (p < 0.001). Celiac children decreased red meat and ultra-processed foods consumption (p < 0.001) and increased fruits and vegetables intake (p < 0.001), leading to a reduction in saturated fat (p < 0.001) and sugar intake (p < 0.001). Furthermore, 92% of the patients achieved a normal bowel habit, including absence of hard stools in 80% of children constipated at baseline (p < 0.001). CONCLUSIONS: RD-led nutrition education is able to improve eating patterns in children with celiac disease (CD).

Adherence to Gluten-Free Diet in Coeliac Paediatric Patients Assessed through a Questionnaire Positively Influences Growth and Quality of Life.

Assessment of adherence to gluten-free diet (GFD) represents the cornerstone in the management of coeliac disease. The primary aim of this study was to assess diet adherence through a questionnaire adapted to children. The secondary aim was to identify influencing factors and outcomes related to diet adherence. In this study, data about diagnosis, education, quality of life (QoL) and anti-transglutaminase (anti-TG2) titers of 160 coeliac children were collected. For the assessment of diet adherence, all participants completed the questionnaire modified from Leffler et al. (2009), while a random sample of 37 also underwent an extensive dietary interview. According to the questionnaire, diet adherence was excellent in 95 (59.4%), fair in 46 (28.8%) and low in 19 (11.9%) patients. Children diagnosed with biopsy showed better adherence than those with a biopsy-sparing approach (p = 0.036). Adherence to GFD tended to worsen during the follow up, with the average length of follow up being associated with lower scores of diet adherence (p = 0.009). Moreover, adherence to GFD decreased throughout school career, dropping from elementary until high school (p = 0.037). A positive correlation was observed between adherence to GFD and growth percentiles, which increased when higher scores of adherence were achieved. Diet adherence positively correlated with QoL (p = 0.001). In conclusion, the questionnaire displayed good sensitivity in detecting problems in diet adherence, being useful as a screening tool. Better comprehension of influencing factors and outcomes may allow the development of new strategies to improve diet adherence.

Adherence to the Gluten-Free Diet during the Lockdown for COVID-19 Pandemic: A Web-Based Survey of Italian Subjects with Celiac Disease.

We aimed to assess the perceived impact of the lockdown, imposed to control the spreading of COVID-19, on the adherence of Italian celiac disease (CD) subjects to the gluten-free diet by a web-based survey. A total of 1983 responses were analyzed, 1614 (81.4%) by CD adults and 369 (18.6%) by parents/caregivers of CD children/adolescents. The compliance with the GFD was unchanged for 69% of the adults and 70% of the children, and improved for 29% of both. The factors increasing the probability to report stricter compliance were the presence of CD symptoms in the last year before the lockdown (odds ratio (OR) 1.98, 95% confidence interval (CI) 1.46-2.26), a partial usual adherence to gluten-free diet (GFD) (OR 1.91, 95% CI 1.2-3.06), and having tried recipes with naturally gluten-free ingredients more than usual (OR 1.58, 95% CI 1.28-1.96) for adults; the presence of CD symptoms in the last year (OR 2.05, 95% CI 1.21-3.47), still positive CD antibodies (OR 1.89, 95% CI 1.14-3.13), and other family members with CD (OR 2.24, 95% CI 1.3-3.85) for children/adolescents. Therefore, the lockdown led to a reported improved adherence to the GFD in one-third of the respondents, in particular in those with previous worse disease control, offering the opportunity to avoid sources of contamination/transgression and increase the use of naturally gluten-free products.

Health related QoL in celiac disease patients in Slovenia.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Quality-of-Life Evaluation in Coeliac Patients on a Gluten-Free Diet.

The treatment for coeliac disease (CD) has a considerable psychological impact on patients, which may vary depending on subjects and clinical characteristics. The aim of this study was to describe the quality of life (QoL) in CD patients during follow-up, evaluating which factors can influence it. Patients with CD who consecutively visited the outpatient clinic of CD Unit of the University Hospital of Padua from January to September 2019 were enrolled. Demographics and clinical information were collected, and all patients were asked to answer the CD-QoL and Biagi's validated questionnaires. Student's t-test and chi-square test were used to compare the continuous and categorical variables, respectively. One hundred patients were enrolled (86 females, mean age at test ± SD: 39.73 ± 13.51; mean age at diagnosis ± SD: 33.09 ± 12.92), with 61% of them having been diagnosed with CD within the previous 5 years. At the time of diagnosis, 43 CD patients reported classical CD presentation, 32 non-classical features, 16 only anaemia and 9 were asymptomatic. The mean CD-QoL value was overall high (80.54 ± 11.91). We found that the "health concerns" subscale score was significantly lower in subjects aged more than 35 years compared to younger subjects (p = 0.03). We also observed that the CD-QoL score in gluten-free diet (GFD)-adherent patients tended to be higher compared to subjects who were non-compliant, with a significantly higher percentage of patients with low score for the "dysphoria" subscale (p = 0.05). This study showed an overall good QoL in subjects on a GFD. However, subjects older and non-compliant to GFD appear to experience more health concerns and suffer from dysphoria, respectively.

Portable gluten sensors: qualitative assessments by adults and adolescents with coeliac disease.

BACKGROUND: Portable gluten sensors are now commercially available to the public, although there is genuine uncertainty within the medical community over whether they should be used for coeliac disease management. The present study described qualitatively the experience of using a portable gluten sensor for 15 adults and 15 adolescents with coeliac disease participating in a 3-month pilot clinical trial. METHODS: Participants were 30 individuals, aged 13-70 years, with biopsy-confirmed coeliac disease on a gluten-free diet. All received a portable gluten sensor and were randomised to low, medium, and high numbers of single-use capsules. Open-ended questions addressed likes and dislikes using the portable gluten sensor after 3 months. Major themes were identified and described. RESULTS: Participants liked that the portable gluten sensor provided extra assurance to check foods presented as gluten-free, the convenient size and portability, the added sense of control, and overall peace-of-mind. Participants disliked having attention drawn to them when using the sensor and feeling as if they were deterring others from eating. Participants also disliked the physical difficulty associated with using the capsules, questionable accuracy and the inability to test fermented foods. Adults were more enthusiastic about the sensor than adolescents. CONCLUSIONS: Positive and negative experiences may be expected when using commercially available portable gluten sensors to help manage coeliac disease. As future versions of this and other gluten sensors become available, it will be important to investigate the relationship between users' experience with the sensors and long-term outcomes such as mucosal healing and quality of life.

Difficulties and factors influencing purchase decision. The perspective of families with children with autism spectrum disorders on a gluten-free and casein-free diet. Preliminary study.

Background: Gluten-free and casein-free diet is frequently used in the support of therapy of children with autism spectrum disorders. In addition, many parents restrict the consumption of simple sugars for their children. Objective: The aim of this paper was to understand factors influencing purchase decision in case of family with children with autism spectrum disorders on gluten-free and/or casein-free and/or sugar-free diet and the difficulties associated with this type of nutrition. Material and methods: The study covered a group of 40 families with children with autism spectrum disorders (32 boys and 8 girls) aged 3 to 10 years. Data were collected with questionnaire included questions concerning overall characteristics of caregivers, availability of foods used in the special diet, factors affecting decision on the purchase of products, difficulties in maintaining the child nutrition method. Results: The factors having strongest impact on parents' decisions on the purchase of products were product composition, presence of a certificate confirming the absence of gluten and/or milk and taste values. Exclusion diet constituted a considerable obstruction for traveling, social gatherings and resulted in conflicts with family and the environment. The limited range of healthy gluten-free, casein-free and sugar-free foods, low taste quality and unsatisfactory quality impeded purchase and preparation of varied meals. Conclusions: The surveyed parents were aware consumers, paying attention primarily to product composition and safety. The respondents were looking for healthy, organic and nutritionally valuable products with low sugar content. Further development of the gluten/casein/ sugar free products market may considerably improve certain aspects of family's life with children with autism spectrum disorders.

Anxiety and depression: a study of psychoaffective, family-related, and daily-life factors in celiac individuals.

OBJECTIVE: To identify the prevalence of anxiety and depression and its association with psychoaffective, family-related, and daily-life variables of celiac individuals. METHODS: Crosssectional study, developed with 83 celiac patients in Fortaleza. An instrument was applied with variables grouped in the categories: psychoaffective, family-related, and daily-life. RESULTS: It was found that 52 celiac patients (62.7%) had anxiety and 29 (34.9%) had depression. The clinical conditions found and the number of symptoms increased the chance of anxiety/depression. The predominant factors in those with anxiety were Lack of control of the celiac disease (98.1%), Perceived clinical condition (75.0%), Daily obstacles for maintaining a gluten-free diet (63.4%), and Daily activities (55.8%). In those with depression, there was a higher prevalence of Lack of control of the celiac disease (100.0%), Perceived clinical condition (82.2%), and Daily obstacles for maintaining a gluten-free diet (69.0%). CONCLUSION: Celiac individuals with anxiety and depression frameworks presented a higher frequency of Perceived clinical condition, Insufficient social support (psychoaffective factors) and Daily obstacles for maintaining a gluten-free diet (daily-life factor).

Influence of nutrition education in paediatric coeliac disease: impact of the role of the registered dietitian: a prospective, single-arm intervention study.

BACKGROUND: The diagnosis of coeliac disease (CD) involves a change in the diet of the individual, which may influence their quality of life and nutritional status. The present study aimed to determine whether nutrition education by a registered dietitian is able to improve eating habits and body composition in children with CD. METHODS: Dietary, physical activity and body composition changes were analysed, comparing baseline assessments with those 1 year after receiving education on healthy eating. At both time points, a 3-day dietary survey, a food frequency consumption questionnaire, an adherence to the Mediterranean diet test (Kidmed), duration of activity and an electrical bioimpedance study were conducted. Student's paired t-test and the McNemar test were also employed. RESULTS: Seventy-two subjects (42 girls) with an mean (range) age of 10 (2-16) years were included. Before the intervention, an unbalanced diet was observed, rich in protein and fat, and deficient in complex carbohydrates. Only 14% consumed an adequate Mediterranean diet. After nutrition intervention, a significant increase in the consumption of plant-based foods and a concomitant decrease in meat, dairy and processed food intake (P < 0.001) were observed. Moreover, 92% of the patients (P < 0.001) managed to consume an adequate Mediterranean diet. Similarly, an increase was observed in the duration of physical activity undertaken [mean (SD) 1.02 (1.79) h, P < 0.001] and improvements in body composition were recorded, with a 17% decrease in fat mass percentage (P < 0.001). CONCLUSIONS: Nutrition intervention focused on healthy eating is effective with respect to improving the nutritional status and diet quality in CD patients.

Health-related quality of life using specific and generic questionnaires in Spanish coeliac children.

BACKGROUND: We aimed to compare the perception of health-related quality of life (HRQOL) and related factors in Spanish coeliac children and their parents, using two questionnaires, the generic KIDSCREEN-52 and the specific the Celiac Disease DUX (CDDUX), and to assess the correlation between them. METHODS: Coeliac children, aged 8-18, who are members of the Madrid Coeliac Association (MCA) and their parents, answered the Spanish version of the CDDUX and KIDSCREEN-52 questionnaires via e-mail. CDDUX was answered by 266 children and 428 parents and KIDSCREEN-52 by 255 children and 387 parents. Linear regression models were fitted to evaluate the association of demographic and clinical factors with HRQOL scores. CDDUX scores were compared with the subjective perception of health status assessed by the first question of KIDSCREEN-52. The correlation between the questionnaires was analysed. RESULTS: We found that the main factors that negatively affected HRQOL were having social or economic difficulties associated with following the diet and having transgression-related symptoms. The maximum correlation between the questionnaires was 0.309 and - 0.254 in parents and children respectively. CONCLUSIONS: Although there is a poor correlation between the two questionnaires, both agreed that the main concerns of the respondents were related to the social and economic difficulties of following the diet. It would be interesting to use both types of questionnaires in order to perform a more complete assessment of HRQOL in coeliac children. TRIAL REGISTRATION: Not applicable.