Sensory Symptoms without Structural Pathology in Patients with Gluten Sensitivity.

We report on a group of patients with gluten sensitivity with and without coeliac disease presenting with unexplained sensory symptoms in the absence of structural pathology. METHODS: The patients were selected from the gluten neurology clinic based at the Royal Hallamshire Hospital, Sheffield, UK, on the basis of sensory symptoms but normal neuroaxis imaging and peripheral nerve evaluation. RESULTS: A total of 30 patients were identified with a mean age at presentation of 47 years. The prevalence of enteropathy was 78%. The sensory disturbance was characterised by tingling at 50%, numbness at 27%, pain at 20%, burning at 13% and "buzzing" feeling at 7%. The distribution of the sensory symptoms included hands and feet in 27% of the patients, torso in 27%, legs only in 23%, face in 17% and arms only in 10%. For five patients, the sensory disturbance was migratory and affected different parts of the body at any given time. After the introduction of a gluten-free diet, 77% of patients noted significant improvement in their sensory symptoms. In one-third of the patients, there was a complete resolution of the sensory symptoms. CONCLUSION: Unexplained sensory symptoms can be seen in patients with gluten sensitivity and respond to strict adherence to a gluten-free diet.

Guidelines for best practices in monitoring established coeliac disease in adult patients.

Coeliac disease (CeD) is an immunological disease triggered by the consumption of gluten contained in food in individuals with a genetic predisposition. Diagnosis is based on the presence of small bowel mucosal atrophy and circulating autoantibodies (anti-type 2 transglutaminase antibodies). After diagnosis, patients follow a strict, life-long gluten-free diet. Although the criteria for diagnosis of this disease are well defined, the monitoring phase has been studied less and there is a lack of specific guidelines for this phase. To develop a set of clinical guidelines for CeD monitoring, we followed the Grading of Recommendations Assessment, Development and Evaluation methodology. Statements and recommendations with the level of evidence were developed and approved by the working group, which comprised gastroenterologists, pathologists, dieticians and biostatisticians. The proposed guidelines, endorsed by the North American and European coeliac disease scientific societies, make recommendations for best practices in monitoring patients with CeD based on the available evidence. The evidence level is low for many topics, suggesting that further research in specific aspects of CeD would be valuable. In conclusion, the present guidelines support clinicians in improving CeD treatment and follow-up and highlight novel issues that should be considered in future studies.

Long-term follow-up in patients with coeliac disease in the pandemic-era: a view from Sheffield the NHS England national centre for adult coeliac disease.

Aim: To explore patients' follow-up preferences. Background: Optimal follow-up strategies for patients with coeliac disease remain a subject of debate. Research suggests patients' prefer review by dietitians with a doctor available as required. Methods: Patients with coeliac disease under review at our centre, completed a questionnaire assessing their views on what makes follow-up useful based on specific criteria. Bloods tests, symptoms review, dietary assessment, opportunity to ask questions and reassurance. Patients' preferences between follow-up with a hospital doctor, a hospital dietitian, a hospital dietitian with a doctor available, a general practitioner, no follow-up or access when needed were also evaluated. Results: 138 adult patients completed the questionnaire, 80% of patients reported following a strict gluten free diet (mean diagnosis was 7.2 years). Overall, 60% found their follow-up to be 'very useful' valuing their review of blood tests and symptoms (71%) reassurance (60%) and opportunity to ask questions (58%). Follow-up by a dietitian with a doctor available was the most preferred option of review (p<0.001) except when compared to hospital doctor (p=0.75). Novel modalities of follow-up such as telephone and video reviews were regarded as of equal value to face-to-face appointments (65% and 62% respectively). Digital applications were significantly less preferable (38%, p<0.001). Conclusion: Follow-up by a dietitian with a doctor available as needed was the most preferred follow-up method. However, in this study follow-up by a dietitian with doctor available and hospital doctor alone was statistically equivalent. Many patients consider telephone and video follow-up of equal value to face-to-face reviews.

Does a Gluten-Free Diet Improve Quality of Life and Sleep in Patients with Non-Coeliac Gluten/Wheat Sensitivity?

INTRODUCTION: The role of a gluten-free diet (GFD) in Non-Coeliac Gluten/Wheat Sensitivity (NCGWS) is unclear. We present the largest study comparing adherence to a GFD in patients with Coeliac Disease (CD) and NCGWS and assess its impact on quality of life (QoL) and sleep in patients with NCGWS. METHODS: Patients with NCGWS at a tertiary centre completed the Coeliac Disease Adherence Test (CDAT), Coeliac Symptom Index (CSI) and Sleep Condition Indicator (SCI). Higher CDAT scores indicate worse adherence, higher CSI scores indicate poorer QoL, and higher SCI scores indicate better sleep. CDAT scores were correlated with CSI and SCI scores. A second group of patients with CD completed the CDAT questionnaire only. Results were compared with the CDAT responses from the NCGWS group. RESULTS: For the NCGWS cohort (n = 125), the median CDAT score was 17/35, indicating poor adherence. The median CSI score was 44/80, with 40% of scores associated with a poor QoL. The median SCI score was 14/32, and DSM-V criteria for insomnia was met by 42% of patients. There was a positive correlation between CSI and CDAT scores (r = 0.59, p < 0.0001) and a negative correlation between SCI and CDAT scores (r = -0.37, p = 0.0002). In the CD cohort (n = 170), the median CDAT score was 13/35. Patients with NCGWS had poorer adherence compared to CD (CDAT: 17.0 vs. 13.0, respectively, p = 0.0001). CONCLUSION: Patients with NCGWS adhere to a GFD less than those with CD. Poorer adherence to a GFD in patients with NCGWS correlates with a worse QoL and sleep performance.

A dietitian-led coeliac service helps to identify and reduce involuntary gluten ingestion with subsequent reduction in the frequency of repeat endoscopies.

BACKGROUND: Dietitian-led coeliac clinics have the potential to be a cost-effective way of monitoring patients living with coeliac disease (CD). The aim of this service evaluation was to explore the impact of a dietitian-led coeliac clinic on gluten-free diet (GFD) adherence and the frequency of endoscopies with repeat duodenal biopsies. METHODS: Adults with biopsy-proven CD were transferred to a new dietitian-led coeliac clinic where data were collected from medical records and analysed using SPSS. GFD adherence was assessed by a specialist dietitian, specialist nurse, consultant gastroenterologists and a validated GFD adherence questionnaire. Repeat duodenal biopsy findings were compared with the most recent dietitian GFD adherence assessment. Project and ethics approval was granted by the hospital trust and affiliated university. RESULTS: Data from 170 patients (White: 51%, South Asian: 45%) are presented, with most being 35-64 years old (61%). Specialist dietitian assessments identified 67 (39%) of patients were adhering to the GFD, whereas prior gastroenterologist or coeliac nurse assessments identified 122 (72%) (p < 0.001) and the validated GFD adherence questionnaire identified 97 (57%) (p < 0.001). Dietitian assessments identified involuntary gluten consumption in 39/104 (38%) of those who self-reported GFD adherence, consequently avoiding the need for nine endoscopies with repeat duodenal biopsies once patients had received dietary education from the dietitian. On follow-up, within the dietitian-led coeliac clinic, significantly fewer patients consumed gluten involuntarily (14%, p < 0.001). In addition, a reduction in voluntary gluten consumption was observed from three to five to one to two times per month (p < 0.001) in 66 patients. CONCLUSIONS: The dietitian-led coeliac clinic helped to identify involuntary gluten ingestion, avoid repeat endoscopies with duodenal biopsies and was associated with significantly improved GFD adherence.

Non-Responsive and Refractory Coeliac Disease: Experience from the NHS England National Centre.

We characterised the aetiology of non-responsive coeliac disease (NRCD) and provided contemporary mortality data in refractory coeliac disease (RCD) from our centre. We also measured urine gluten immunogenic peptides (GIPs) in patients with established RCD1 to evaluate gluten exposure in these individuals. METHODS: This was a longitudinal cohort study conducted in Sheffield, UK. Between 1998 and 2019, we evaluated 285 adult (≥16 years) patients with NRCD or RCD. Patients with established RCD1 and persisting mucosal inflammation and/or ongoing symptoms provided three urine samples for GIP analysis. RESULTS: The most common cause of NRCD across the cohort was gluten exposure (72/285; 25.3%). RCD accounted for 65/285 patients (22.8%), 54/65 patients (83.1%) had RCD1 and 11/65 patients (16.9%) had RCD2. The estimated 5-year survival was 90% for RCD1 and 58% for RCD2 (p = 0.016). A total of 36/54 (66.7%) patients with RCD1 underwent urinary GIP testing and 17/36 (47.2%) had at least one positive urinary GIP test. CONCLUSION: The contemporary mortality data in RCD2 remains poor; patients with suspected RCD2 should be referred to a recognised national centre for consideration of novel therapies. The high frequency of urinary GIP positivity suggests that gluten exposure may be common in RCD1; further studies with matched controls are warranted to assess this further.

Efficacy and Acceptability of Dietary Therapies in Non-Constipated Irritable Bowel Syndrome: A Randomized Trial of Traditional Dietary Advice, the Low FODMAP Diet, and the Gluten-Free Diet.

BACKGROUND & AIMS: Various diets are proposed as first-line therapies for non-constipated irritable bowel syndrome (IBS) despite insufficient or low-quality evidence. We performed a randomized trial comparing traditional dietary advice (TDA) against the low FODMAP diet (LFD) and gluten-free diet (GFD). METHODS: Patients with Rome IV-defined non-constipated IBS were randomized to TDA, LFD, or GFD (the latter allowing for minute gluten cross-contamination). The primary end point was clinical response after 4 weeks of dietary intervention, as defined by ≥50-point reduction in IBS symptom severity score (IBS-SSS). Secondary end points included (1) changes in individual IBS-SSS items within clinical responders, (2) acceptability and food-related quality of life with dietary therapy, (3) changes in nutritional intake, (4) alterations in stool dysbiosis index, and (5) baseline factors associated with clinical response. RESULTS: The primary end point of ≥50-point reduction in IBS-SSS was met by 42% (n = 14/33) undertaking TDA, 55% (n = 18/33) for LFD, and 58% (n = 19/33) for GFD (P = .43). Responders had similar improvements in IBS-SSS items regardless of their allocated diet. Individuals found TDA cheaper (P < .01), less time-consuming to shop (P < .01), and easier to follow when eating out (P = .03) than the GFD and LFD. TDA was also easier to incorporate into daily life than the LFD (P = .02). Overall reductions in micronutrient and macronutrient intake did not significantly differ across the diets. However, the LFD group had the greatest reduction in total FODMAP content (27.7 g/day before intervention to 7.6 g/day at week 4) compared with the GFD (27.4 g/day to 22.4 g/day) and TDA (24.9 g/day to 15.2 g/day) (P < .01). Alterations in stool dysbiosis index were similar across the diets, with 22%-29% showing reduced dysbiosis, 35%-39% no change, and 35%-40% increased dysbiosis (P = .99). Baseline clinical characteristics and stool dysbiosis index did not predict response to dietary therapy. CONCLUSIONS: TDA, LFD, and GFD are effective approaches in non-constipated IBS, but TDA is the most patient-friendly in terms of cost and convenience. We recommend TDA as the first-choice dietary therapy in non-constipated IBS, with LFD and GFD reserved according to specific patient preferences and specialist dietetic input. CLINICALTRIALS: gov: NCT04072991.

Adult celiac disease with persistent IBS-type symptoms: a pilot study of an adjuvant FODMAP diet.

AIM: This pilot study assessed the benefits of an adjuvant low FODMAP diet (LFD) in adult CD patients established on GFD who had a normal remission biopsy. BACKGROUND: Patients with biopsy-proven adult celiac disease (CD) may have on-going gastrointestinal symptoms despite adherence to a gluten-free diet (GFD). Functional gut symptoms, including irritable bowel syndrome (IBS), is one cause of persistent symptoms in CD patients. METHODS: Twenty-five adult CD patients who were adherent to the GFD were recruited. These patients had histologically normal villi on their remission biopsy. A specialist dietitian then offered an adjuvant LFD. Symptom response was assessed using the Gastrointestinal Symptom Rating Scale (GSRS) from baseline to follow up. RESULTS: Of the 25 CD patients in remission with concurrent IBS, 9 did not wish to pursue the LFD, and 1 had incomplete data. Fifteen patients completed a minimum of four weeks on the LFD (mean age 44 ± 17.3; range 43.2 years; median duration of CD follow-up 7.2 years). Global relief of gut symptoms was reported by 8/15 patients (53% p = 0.007). Significant reductions in abdominal pain (p <0.01), distension (p < 0.02), and flatulence (p <0.01) were demonstrated. CONCLUSION: This is the first study to demonstrate that an adjunct LFD is an effective dietary treatment for concurrent IBS in adult CD patients with biopsy-confirmed remission. Such patients should be seen by a specialist dietitian to ensure nutritional adequacy and appropriate reintroduction of FODMAP-containing foods.

Neurological Evaluation of Patients with Newly Diagnosed Coeliac Disease Presenting to Gastroenterologists: A 7-Year Follow-Up Study.

We have previously shown that 67% of patients with newly diagnosed coeliac disease (CD) presenting to gastroenterologists have evidence of neurological dysfunction. This manifested with headache and loss of co-ordination. Furthermore 60% of these patients had abnormal brain imaging. In this follow-up study, we re-examined and re-scanned 30 patients from the original cohort of 100, seven years later. There was significant reduction in the prevalence of headaches (47% to 20%) but an increase in the prevalence of incoordination (27% to 47%). Although those patients with coordination problems at baseline reported improvement on the gluten free diet (GFD), there were 7 patients reporting incoordination not present at baseline. All 7 patients had positive serology for one or more gluten-sensitivity related antibodies at follow-up. In total, 50% of the whole follow-up cohort were positive for one or more gluten-related antibodies. A comparison between the baseline and follow-up brain imaging showed a greater rate of cerebellar grey matter atrophy in the antibody positive group compared to the antibody negative group. Patients with CD who do not adhere to a strict GFD and are serological positive are at risk of developing ataxia, and have a significantly higher rate of cerebellar atrophy when compared to patients with negative serology. This highlights the importance of regular review and close monitoring.

The low FODMAP diet for IBS; A multicentre UK study assessing long term follow up.

BACKGROUND: The low FODMAP diet (LFD) is effective in managing irritable bowel syndrome (IBS) in the short term. This study assessed the long-term effect of the LFD on symptoms, nutritional composition and socialising. METHODS: Patients with IBS who received dietetic-led LFD advice were approached at long term follow up (>6 months post LFD advice) from six centres across the United Kingdom. Participants completed questionnaires assessing gastrointestinal symptoms, adherence, nutritional intake, dietary acceptability and food related quality of life (QOL). RESULTS: 205 participants completed the study, with a mean follow up of 44 months (3.7 years). Adequate symptom relief was noted in 60% of individuals at long term follow up, with 76% being on the personalisation phase of the LFD (pLFD). Mean nutritional intake did not differ between individuals on the pLFD versus habitual diet, with no difference in fructan intake (2.9 g/d vs 2.9 g/d, p = 0.96). The majority (80%) of individuals on the pLFD consumed specific 'free-from' products at the long term, with the purchase of gluten or wheat free products being the commonest (68%). CONCLUSION: The majority of patients follow the pLFD in the long term, with a large proportion purchasing gluten or wheat free products to manage their symptoms.

National survey evaluating the provision of gastroenterology dietetic services in England.

Aims: The aim of the study was to assess the provision of dietetic services for coeliac disease (CD), irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD). Methods: Hospitals within all National Health Service trusts in England were approached (n=209). A custom-designed web-based questionnaire was circulated via contact methods of email, post or telephone. Individuals/teams with knowledge of gastrointestinal (GI) dietetic services within their trust were invited to complete. Results: 76% of trusts (n=158) provided GI dietetic services, with responses received from 78% of these trusts (n=123). The median number of dietitians per 100 000 population was 3.64 (range 0.15-16.60), which differed significantly between regions (p=0.03). The most common individual consultation time for patients with CD, IBS and IBD was 15-30 min (43%, 44% and 54%, respectively). GI dietetic services were delivered both via individual and group counselling, with individual counselling being the more frequent delivery method available (93% individual vs 34% group). A significant proportion of trusts did not deliver any specialist dietetic clinics for CD, IBS and IBD (49% (n=60), 50% (n=61) and 72% (n=88), respectively). Conclusion: There is an inequity of GI dietetic services across England, with regional differences in the level of provision and extent of specialist care. Allocated time for clinics appears to be insufficient compared with time advocated in the literature. Group clinics are becoming a more common method of dietetic service delivery for CD and IBS. National guidance on GI dietetic service delivery is required to ensure equity of dietetic services across England.

Is Peer Support in Group Clinics as Effective as Traditional Individual Appointments? The First Study in Patients With Celiac Disease.

INTRODUCTION: Celiac disease (CD) is common, affecting approximately 1% of the population. The cornerstone of management is a gluten-free diet, with dietetic advice being the key to aiding implementation. The aim of the study was to assess group clinics in comparison with traditional individual appointments. METHODS: Patients with a new diagnosis of CD, confirmed histologically, were prospectively recruited over 18 months in Sheffield, United Kingdom. Patients received either a group clinic or traditional one-to-one appointment, led by a dietitian. Quality-of-life questionnaires were completed at baseline, as well as biochemical parameters being recorded. Patients were followed up at 3 months, where adherence scores were assessed as well as biochemical parameters and quality of life questionnaires being completed. RESULTS: Sixty patients with CD were prospectively recruited and received either an individual (n = 30) or group clinic (n = 30). A statistically significant reduction in tissue transglutaminase was noted following group clinics (mean 58.5, SD 43.4 U/mL vs mean 13.2, SD 5.7 U/mL, P < 0.01). No significant differences in baseline and follow-up biochemical parameters between one-to-one and group clinics were noted. At follow-up, there was no statistically significant difference between mean gluten-free diet adherence scores (mean 3.1, SD 0.4 vs mean 3.1, SD 0.7, P = 0.66) between one-to-one and group clinics. DISCUSSION: This first study assessing group clinics in CD demonstrates they are as effective as traditional one-to-one clinics, with the added benefits of peer support and greater efficiency, with an estimated 54% reduction of dietetic resources.

A Gluten Reduction Is the Patients' Choice for a Dietary 'Bottom Up' Approach in IBS-A Comment on "A 5Ad Dietary Protocol for Functional Bowel Disorders" Nutrients 2019, 11, 1938.

We read the article by Ibrahim and Stribling [...].

How Patients with IBS Use Low FODMAP Dietary Information Provided by General Practitioners and Gastroenterologists: A Qualitative Study.

There is a lack of dietitians trained to deliver the low fermentable oligosaccharides, disaccharides, monosaccharides, and polyols (FODMAP) diet (LFD) for irritable bowel syndrome (IBS). Many patients receive nutritional information from general practitioners (GPs) or gastroenterologists (GEs). Since the LFD is dietitian-led, the aim of this research was to qualitatively explore the effects of GP- and GE-delivered LFD information, in IBS self-management. Semi-structured interviews were conducted in a purposive sample of 8 people with IBS (6 female), who used the LFD as their primary treatment. Interpretive Phenomenological Analysis (IPA) was used to develop themes on the lived experience of the participant's use of LFD information from GPs and GEs. This information was perceived as trustworthy but simplistic; often just "food lists" with little personalisation to meet individual needs and difficult to apply in "real life". The information required substantial interpretation and the familial and social effects of implementation were not addressed in the materials provided. Supplementary digital resources were regarded as more practical but the participants expressed concern in relation to the validity of these materials. The findings in this study support current clinical guidelines proposed by both the National Institute for Health and Care Excellence and the British Dietetic Association that the LFD should be considered a dietitian-led only intervention.

A Population Survey of Dietary Attitudes towards Gluten.

It is unclear how the prevalence of people who believe the gluten-free diet (GFD) to be generally healthy ("Lifestylers") is impacting the overall rates of self-reported gluten sensitivity (GS). We repeated a population survey from 2012 in order to examine how attitudes towards GS have changed over time. Our survey (N = 1004) was administered in Sheffield (UK) in 2015, replicating the 2012 experiment. The questionnaire included a food frequency survey and assessed self-reported GS as well as associated variables (prevalence, current diet, pre-existing conditions, etc.). The overall rates of key variables and chi-squared analysis in comparison to the previous survey were as follows: self-reported GS was 32.8% (previously 12.9%, p < 0.001), pre-existing coeliac disease (CD) was 1.2% (previously 0.8%, p = 0.370), following a GFD was 3.7% (previously 3.7%, p = 0.997). Self-reported GS was positively associated with some pre-existing conditions, including anxiety, depression, chronic fatigue, headaches, and other food allergies/intolerances (including irritable bowel syndrome (IBS); chi-squared analyses, all p < 0.001). Over a 3-year period, the fraction of people who self-reported GS increased by over 250%. Despite this, arguably more meaningful indications of underlying physiological GS remained comparable. This research suggests that the public perception of gluten is causing a marked increase in the number of people who erroneously believe they are sensitive to it.