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A survey of people with inflammatory bowel disease to investigate their views of food and nutritional issues

Abstract

Survey aims were to investigate the dietary concerns, beliefs and opinions of people with inflammatory bowel disease (IBD), and differences between those with Crohn’s disease (CD) or ulcerative colitis (UC). A cross-sectional postal questionnaire was sent to people with IBD who were booked into an adult IBD or Gastroenterology clinic over a 6-week period. There were 416 eligible people and 168 (40%) responded. Sixty-four (42%) people indicated that food affects their symptoms a lot or severely. Eighty (51%) respondents indicated that diet was important or extremely important in controlling symptoms. Significantly more people with CD reported meat, fatty foods, chocolate and salad as a trigger than people with UC. Significantly more people with UC reported wheat as a trigger. More people with CD avoided meat and chocolate than UC. This survey highlights the importance of nutrition and diet to people with IBD. Frequent food avoidance was reported. This may impact on nutrition-related health problems.

Introduction

Inflammatory bowel disease (IBD) affects many aspects of people’s lives, and it is recognised that social activities such as socialising, eating out and attending work are affected.1

Between 20% and 85% of people with IBD have nutritional deficiencies;2 causes are multifactorial including poor dietary intake, increased nutritional requirements and malabsorption. Deficiencies are present during active disease and persist long after remission.3 Food intolerances are reported by 65% of people with IBD compared with 14% of the general population,3 and 65% believe that food consumed is relevant to their ulcerative colitis (UC).4

The survey aimed to investigate the dietary concerns, beliefs and opinions of people with IBD and any differences between people with Crohn's disease (CD) or UC.

Subjects and methods

A cross-sectional postal questionnaire was conducted. Adults over 18 years diagnosed with IBD who completed the questionnaires were included. Consent was assumed on receipt of completed questionnaires. Participants were given 6 weeks to respond; after 3 weeks a reminder was sent.

Data from the returned questionnaires were inputted into SPSS version 21 (IBM, SPSS Inc., Chicago, IL, USA). Continuous and categorical data were summarised, and comparisons between groups used the unpaired t-test or non-parametric tests including the X2 test and fisher’s exact. Ethical approval was agreed by the NRES Committee London.

Results

A questionnaire was sent to all 416 eligible people with IBD. The response rate was 40% (n: 168). Eleven questionnaires were excluded because of missing data; hence, 157 were analysed. Table 1 shows demographic data and body mass index.

Table 1 Demographic and clinical characteristics of participants

It was indicated by 65 (42%) people that food affected their symptoms a lot or severely. There was no difference between UC and CD patients (n: 26, 41%, and n: 39, 44%, respectively, P=0.693).

People with CD were equally as likely to have concerns regarding food and nutrition as those with UC (n: 50, 55% and n: 33, 51%, respectively, P=0.555). The concerns reported were symptom control and food (total n: 73, 47%, CD n: 45, 49% and UC n: 28, 44% P =0.722), nutritional balance of the diet (total n: 38, 25%, CD n: 21, 23% and UC n: 17, 27% P=0.707), being overweight (total n: 38, 25%, CD n: 22, 24% and UCn: 16, 3% P=0.929), eating out (total n: 31, 20%, CD n: 18, 20% and UC n: 13, 20% P=0.117), body appearance (total n: 26, 19%, CD n: 16, 18% and UC n: 10, 16% P=0.937) and being underweight (total n: 8, 5%, CD n: 6, 6.5% and UC n: 2, 3% P=0.707). Eighty (51%) respondents indicated that diet was important or extremely important in controlling symptoms.

There were 110 foods cited as causing symptoms referred to as ‘trigger foods’, and 127 foods were avoided (Figure 1). Similar foods were grouped into categories.

Figure 1
figure1

Percentage of people who report trigger foods and foods avoided in people with CD versus people with UC symptoms.

Eighty (51%) respondents indicated that diet was important or extremely important as a means of controlling symptoms (UC n: 29, 45% and CD n: 51, 57%, P= 0.138).

Diet affected social activities for 61 (40%) respondents, eating out (n: 23, 15%), socialising (n: 17, 11%) and sport activities (n: 10, 7%).

Discussion

Other studies have also found that people with IBD have concerns about uncertainties regarding diet and food.3 These studies show that a large proportion state that diet impacts on their symptoms4, 5 commonly leading to food exclusions, mirroring the findings in the present study. Reported food intolerances are equally as common in people with CD and UC. The common problematic foods identified are similar to other studies.3, 4, 5, 6

A small number of participants reported problems with individual types of meat such as beef, lamb, steak, pork and red meat. This was low in both UC and CD (<2%). When these meats were grouped together, the results showed a significantly higher proportion of people with CD describing meat as a trigger and avoiding meat compared with UC. This is surprising in view of the data on high intake of meat causing relapses in UC.5 This warrants further investigation into the role of meat in CD.

Dairy was commonly reported as a problem and avoided with no significant difference between CD and UC. Dairy products have been traditionally thought of as problematic for people with IBD, and symptom improvements have been reported on their avoidance.7 Albeit there is currently a lack of evidence that lactose intolerance is higher in the IBD cohort than the general population, with the exception of small bowel CD.8

Fatty foods were found to be more of a problem for people with CD than UC. Immunomodulating effects of lipids have long been proposed and studied in CD. Quantity and source of dietary lipids have been proposed to affect cytokine responses, production of proinflammatory eicosanoids, lymphocyte migration and regulation of adhesion molecules.9 High-fat diets have been shown to accelerate disease onset of small intestinal inflammation in animal studies.10 Lipid composition of the enteral formula has been proposed as a factor for success when used as a primary therapeutic modality in CD, although a Cochrane review showed no significant difference for low-fat versus high-fat feeds.11 Another possible cause of intolerance of fatty foods is bile acid malabsorption and bile acid induced diarrhoea in people who have ileal disease or have had a resection of the terminal ileum in CD. Dietary strategies for management of CD, such as the LOFFLEX diet, incorporate low-fat elements based on the reported problems of high-fat foods.6

There is no definite rationale for why chocolate is more of a problem for people with CD than UC. It should be remembered that foods are avoided for a variety of reasons and where foods are not identified as a trigger there is likely another reason for avoidance, for example healthy eating.

There is no definite rationale for why wheat is more of a problem for people with UC. Irritable bowel syndrome is common in people with IBD thought to be in remission;12 some may still have occult inflammation, but some symptoms could be secondary to food intolerances. There is some evidence that supports that diets low in Fermentable Oligo-saccharides, Mono-saccharides and Polyols (FODMAPs) help improve symptoms in people with IBD.13 Several of the foods identified as causing people symptoms could fall into the category of high FODMAP foods, for example, wheat and lactose. Spicy foods such as curry are high in FODMAPs. Salads often have skins on when eaten, and these skins, which contain insoluble fibre, could cause some people with CD more of a problem because of stricturing CD.

The only foods having been identified to increase the likelihood of relapses in UC are alcohol, meat and meat products in high intakes.4 Despite this small number of foods being shown to have a role in exacerbating a relapse, and no definite answer about the role of food in relation to pathogenesis, the belief that food is a trigger results in dietary exclusions. This can have a detrimental effect on the nutritional value of diets without adequate supervision and advice from health professionals.

More women than men responded to the questionnaire, and there was limited representation from ethnic minority groups.

Further research is needed to try and explore whether patients with IBD can have an improvement in symptoms from a structured food exclusion diet.

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Acknowledgements

This research was supported by an Allied Health Professional small grant from Central Manchester Foundation Trust research group.

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Correspondence to L Kinsey.

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Kinsey, L., Burden, S. A survey of people with inflammatory bowel disease to investigate their views of food and nutritional issues. Eur J Clin Nutr 70, 852–854 (2016). https://doi.org/10.1038/ejcn.2016.57

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