A Survey on Nutritional Knowledge in Coeliac Disease Compared to Inflammatory Bowel Diseases Patients and Healthy Subjects (original) (raw)
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Coeliac disease: eating habits and quality of life
British Food Journal, 2012
PurposeTreatment of coeliac disease (CD) is essentially dietary and requires permanent changes in dietary habits. Gluten‐free diet compliance affects every aspect of an individual's quality of life. This paper aims to analyse the difficulties associated with the food practices tried and reported by CD patients and their health and quality of life.Design/methodology/approachA questionnaire with open, closed and multiple choice questions adapted from an already validated instrument was administered to a sample of 105 CD patients. The inclusion criteria were patients diagnosed with CD living in Distrito Federal (DF) who agreed to participate in the study.FindingsThe greatest concerns of CD patients were eating out (44.23 per cent), having to read food labels (50.00 per cent), believing that foods are not safe (52.88 per cent) and not having dietary alternatives (56.44 per cent). Some (39.42 per cent) patients have no difficulty following the diet, 42.3 per cent have some difficulty...
Proceedings of the Nutrition Society, 2009
It seems obvious to healthcare professionals that patients with coeliac disease should receive regular follow-up. Surprisingly, there is little evidence that patients benefit in terms of reduced morbidity or mortality. However, several authoritative bodies have published guidelines on the management of coeliac disease that recommend regular follow-up. There is good evidence that compliance with a gluten-free diet reduces the risk of complications such as osteoporosis or small bowel lymphoma. Compliance is enhanced particularly by education about the disease and the gluten-free diet and by support from peers or professionals. Such input can be provided by regular follow-up, which thereby should improve compliance and hence long-term health. The consensus of the recommendations for follow-up suggests an annual review by a physician and dietitian. At annual follow-up the disease status can be checked and nutritional advice can be given, including checking the adequacy of, and the compliance with, the gluten-free diet. Complications and associated medical conditions can be sought, genetic risks explained and support and reassurance given. Specialist dietitians have particular expertise in relation to diet and nutritional management; specialist clinicians have a broader range of expertise in many aspects of management of the disease. A team approach for providing follow-up is the ideal, with a clinician and dietitian, both with expertise in coeliac disease, being involved. No one particular group of healthcare professionals is necessarily better than the other at providing follow-up.
sswahs.nsw.gov.au
The treatment for coeliac disease is a gluten free diet. Whether it is safe for coeliacs to ingest the minute amounts of gluten often found in gluten free diets is still controversial. The WHO/FAO Codex Alimentarius allows 0.3% protein from gluten containing grains in foods labelled as gluten free. This is thought to be the standard upon which gluten free diets are based in research studies and which is adopted as practice in many countries including Australia in the past. In March 1995 the Australian standard for gluten free food labelling changed from this WHO guideline. Currently a food cannot be labelled gluten free if it contains any detectable gluten. This study set out to examine the dietary patterns in a large population of subjects with coeliac disease and to relate any symptoms being experienced to the different levels of gluten restriction. This may help to determine if the dietary advice given to all coeliacs should now fall in line with the new Australian food standard for gluten free food labelling. Of the 1672 questionnaires sent to members of the Coeliac Society of NSW, 965 (58%) were returned. This questionnaire asked for a graded description of the severity and frequency of gastrointestinal symptoms commonly experienced by coeliacs, and other less commonly related symptoms. Food brand selection questions were asked so classification into one of three diet categories could be made. The categories were: overt gluten ingestion; trace gluten ingestion in accordance with the old Australian food standard and no detectable gluten ingestion as in the new Australian guidelines. Of the 71.9% of the respondents with trace gluten ingestion, 73% stated that they were not aware of ingesting gluten. After diagnosis and commencement of gluten restriction, a large proportion were still experiencing symptoms but generally found them to be less frequent and less severe. The frequency and severity of symptoms was greater at gluten intakes above that allowed in the old Australian gluten free diet. A comparison of symptom expression between the trace gluten and no detectable gluten diets revealed that only 2 of the 13 symptom categories were significantly different (p<0.01). Constipation was more severe(p=0.0051) in the trace gluten group, while diarrhoea occurred more frequently in those consuming no detectable gluten. The lack of differences in symptoms seen between the trace gluten and no detectable gluten diet categories would suggest that the less restrictive trace gluten diet may be appropriate for some coeliacs.
Coeliac disease: the path to diagnosis and the reality of living with the disease
Journal of Human Nutrition and Dietetics, 2013
Background: Coeliac disease (CD) is an under-diagnosed and often misunderstood disease, yet is one of the most common food intolerance disorders. The only treatment available to prevent the health impacts of CD is a lifelong, strict gluten-free diet (GFD). There are few studies that explore the experiences of diagnosis and the everyday experiences of living with this chronic condition. Methods: Utilising a qualitative study design, and purposive sampling, the present study describes the experiences of 10 women with coeliac disease in Victoria, Australia. Individual interviews were conducted with women aged between 31 and 60 years who had been diagnosed with CD for at least 2 years. Results: A thematic analysis of the interview transcripts highlighted a number of issues for those living with the disease. Reactions to diagnosis, transition to a GFD and the changes needed to live with CD are discussed. Conclusions: A range of recommendations including the need to increase CD awareness and education and further research on the impacts of living with the disease are made.
Quality of Diet of Patients with Coeliac Disease in Comparison to Healthy Children
Children
A lifelong strict gluten-free diet is the only available treatment for patients with coeliac disease (CD). As with any restrictive diet, it may potentially lead to nutritional deficits. Seventy-six patients with CD (mean age 9.0 ± 4.3 years, 57% female) and 590 healthy controls (HC) (mean age 9.9 ± 0.1 years, 54% female) were recruited and requested to keep a 3-day food record (3DFR). In HC patients, anthropometric data were determined at the time when 3DFRs were collected. In CD patients, anthropometric data were determined at two time points: at diagnosis and at the time of 3DFRs collection. Intake of energy, macronutrients, and micronutrients was determined using PRODI expert 6.9 software and expressed as a percentage of recommended daily intake. In CD patients, all measured anthropometric measures (body weight (BW), body height (BH), and body mass index (BMI) z-scores) increased significantly after the mean duration of 34.1 months of a GFD. Overall, CD patients had significantly...
Alimentary Pharmacology and Therapeutics, 2005
Background: The benefits of serologic screening for coeliac disease in asymptomatic individuals are debatable. Aim: To investigate dietary compliance, quality of life and bone mineral density after long-term treatment in coeliac disease patients found by screening in risk groups. Methods: The study comprised 53 consecutive screendetected coeliac patients diagnosed 14 years (median) ago. Dietary compliance was assessed by interview, 4-day food record and serology. Quality of life was evaluated by the Psychological General Well-Being and SF-36 questionnaires, gastrointestinal symptoms by the Gastrointestinal Symptom Rating Scale and bone mineral density by dual-energy x-ray absorptiometry.
Challenges in gluten-free diet in coeliac disease: Prague consensus
European Journal of Clinical Investigation, 2017
Background New treatments in coeliac disease are being vigorously pursued to either replace or facilitate the difficult-tofollow gluten-free diet. Design The present review intends to summarise the challenges in gluten-free diet adherence during the transitional period, as reflected in the last Prague consensus, published in 2016. Results The honourable panel members recommended that dietary adherence and the consequences of nonadherence represent key components for discussion in the transitional period setting. Conclusions There are numerous difficulties in adhering to gluten withdrawal, but the transition period from adolescence to young adulthood is considered a fragile and high-risk period for intentional and unintentional gluten intake.
Systematic review: patient-reported outcome measures in coeliac disease for regulatory submissions
Alimentary Pharmacology & Therapeutics, 2016
Background New therapeutics are moving into phase 3 clinical trials for the treatment of coeliac disease, a condition with no established therapies other than gluten-free diet. These trials will require a meaningful, validated and fit for purpose patient-reported outcome measure (PROM) to quantify the symptomatic improvement of patients. Aim To evaluate existing PROMs for suitability in a Food and Drug Administration (FDA) approval trial for a coeliac disease therapeutic. Method We performed a systematic search in five online databases (MedLine, EmBase, Web of Science, CENTRAL, CINAHL) for studies that enrolled patients with coeliac disease and used PROMs. Studies included in this review had to measure some PROM concept, be patient administered and based upon a previously validated instrument with published measurement properties. Results Our literature search identified 2706 unique records of which 199 ultimately qualified for abstraction. The majority of PROMs used in studies of coeliac disease was generic and did not measure numerous symptoms or concerns of interest to patients. Four PROMs were found to contain appropriate content for use in an FDA trial: the coeliac disease-specific modification of the Gastrointestinal Symptoms Rating Scale (CeD-GSRS), Psychological General Well-Being Index (PGWB), the Celiac Disease Symptom Diary (CDSD) and the Celiac Disease Patient Reported Outcome (CeD-PRO). The GSRS and PGWB are most often used together and are two of the most extensively used measures in coeliac disease. The CDSD and CeD-PRO were developed exclusively for trials in coeliac disease but have much less published information on their measurement properties. Conclusions While we did not find PROMs that currently meet the stated expectations of the FDA for regulatory purposes, four PROMs (CeD-GSRS, PGWB, CDSD and CeD-PRO) appear to contain appropriate content and with modest additional validation work could meet scientific standards for valid and sensitive measures of disease and treatment outcome. Specifically, what is needed for these instruments is an understanding of how sensitive they are to real changes in-patient condition, how stable they are over a period of time when health status should not have changed (test-retest reliability) as well as how they correlate with other measures of patient functioning such as intestinal biopsy. All of these objectives could feasibly be accomplished over a short cohort study of patients with biopsy-defined coeliac disease undergoing gluten challenge.