You are here

  • Home
  • Archive
  • Volume 14, Issue 10
  • Food insecurity and other barriers to adherence to a gluten-free diet in individuals with coeliac disease and non-coeliac gluten sensitivity in the Netherlands: a mixed-methods study

Article Text

Article menu
Public health
Original research
Food insecurity and other barriers to adherence to a gluten-free diet in individuals with coeliac disease and non-coeliac gluten sensitivity in the Netherlands: a mixed-methods study
  1. Sharine M Smeets,
  2. Jessica C Kiefte-de Jong,
  3. Laura A van der Velde
  1. Health Campus The Hague/Department of Public Health and Primary Care, Leiden University Medical Center, The Hague, The Netherlands
  1. Correspondence to Laura A van der Velde; L.A.van_der_Velde{at}lumc.nl

Abstract

Objectives To determine the prevalence of food insecurity among individuals with coeliac disease (CeD) and non-coeliac gluten sensitivity (NCGS) in the Netherlands and explore its association with diet quality and other barriers to adherence to a gluten-free diet.

Design Mixed-method design comprising a survey and semistructured interviews.

Setting An online survey was distributed through social media accounts and the newsletter of the Dutch Association for Celiac Disease. Community-dwelling patients were surveyed and interviewed between June and November 2023.

Participants and outcome measures In total 548 adults with CeD and NCGS in the Netherlands who adhered to a gluten-free diet completed the survey including questions related to demographics, household food insecurity, financial stress and diet quality. Regression analyses were conducted to assess associations between food insecurity and diet quality, and between food insecurity and perceived difficulty of gluten-free eating and cooking. Additionally, semistructured interviews with eight food insecure adults with CeD were conducted.

Results The prevalence of food insecurity was 23.2%, with 10.4% reporting very low food security. Very low food insecurity was associated with poorer diet quality (β=−5.5; 95% CI=−9.2 to –1.9; p=0.003). Food insecurity was associated with heightened perceived barriers across multiple themes. In age, income and education adjusted models, compared with food secure participants, low food secure participants were more likely to experience difficulty regarding skills (OR=2.5; 95% CI=1.5 to 4.3; p≤0.001), social circumstances (OR=2.6; 95% CI=1.1 to 6.4; p=0.038), resources (OR=2.5; 95% CI=1.5 to 4.4; p=0.001) and naturally gluten-free products (OR=1.8; 95% CI=1.0 to 3.1; p=0.045) in gluten-free eating and cooking. Participants with very low food security were more likely to experience difficulty regarding skills (OR=4.4; 95% CI=2.4 to 8.1; p≤0.001) and resources (OR=4.2; 95% CI=2.3 to 7.8; p<0.001) in gluten-free eating and cooking. The qualitative analysis provided a deeper understanding of these challenges, including employed strategies to manage costs and insights into the mental burden associated with adhering to a gluten-free diet.

Conclusion These findings indicate that food insecurity is prevalent among Dutch people with CeD and NCGS, with potential impact on diet quality and adherence to a gluten-free diet. It further provided insight into perceived barriers to adhering to a gluten-free diet among this target population. These challenges should be taken into account by clinicians and policy makers.

  • food insecurity
  • celiac disease
  • nutrition & dietetics
  • nutritional support

Data availability statement

Data are available upon reasonable request.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2024-088069

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    STRENGTHS AND LIMITATIONS OF THIS STUDY

    • A strength is the mixed-methods study design allowing for more in depth insight and putting the data in the context of personal experiences of people with a gluten-free diet.

    • The cross-sectional design precludes causal conclusions regarding factors associated with food insecurity.

    • Quantative survey data were self-reported which may lead to information bias.

    Introduction

    Food insecurity remains an important global issue, both in developing nations and in high-income countries. The prevalence of food insecurity in Northern America and Europe has increased to 8.0% in 2022. Food security can be defined as having ‘physical and economic access to sufficient, safe and nutritious food to meet dietary needs and food preferences for an active and healthy life’.1 Whereas in the past research on food security was mostly focused on developing countries, there has been an increase of food security research in high-income countries in recent years.2 This was intensified amidst the COVID-19 pandemic, with worldwide food shortages, increased food prices and loss of income making food insecurity more visible.3 Part of the research on food insecurity has focused on target populations that appear to be at risk for food insecurity, such as low-income households, ethnic minorities and senior citizens.4–9 In the Netherlands, limited food security research has been done, but it has identified a 73% prevalence of food insecurity among food bank recipients and a 26% prevalence in disadvantaged neighbourhoods.10 11

    Individuals with medical dietary restrictions, such as food allergies or hypersensitivities, may be another group at risk for food insecurity, as they face diets that are often expensive and difficult to access.12 Few studies have been conducted on food insecurity among people with food hypersensitivity and specifically coeliac disease (CeD). CeD is an autoimmune disorder which primarily affects the small intestine and is triggered by the ingestion of gluten. While there is active research into pharmacological therapy, current treatment consists of adhering to a gluten-free (GF) diet.13 Along with people with CeD, people with non-coeliac gluten sensitivity (NCGS) also benefit from following a GF diet. These are people without CeD or wheat hypersensitivity who suffer from reproducible symptomatic responses to gluten-containing foods.14

    However, adhering to a GF diet can be a challenge. Compared with their gluten-containing counterparts, GF products can be up to four times more expensive.15 16 Therefore, adhering to a GF diet is associated with an increased economic burden for people with CeD or NCGS.15 This economic burden is expected to be even higher at present, as food prices in the European Union have risen dramatically since the beginning of 2022.17 In addition to costs, the availability of GF products and inadequate food labelling have been identified previously as major barriers to following a GF diet.18 Furthermore, eating out at restaurants or attending social events may also pose a challenge, due to the limited availability of GF food options. Aside from these obstacles, factors influencing the belief in one’s ability to adhere to a GF diet, such as concerns about availability of GF foods, may also play a role in GF diet adherence. These fall within the realm of ‘perceived behavioural control’ within the theory of planned behaviour (TPB).19 Prior TPB research among people with CeD has shown that perceived behavioural control, as well as one’s ‘attitude’ towards the diet, significantly influences overall adherence to a GF diet.20 21 This could imply that individuals experiencing food insecurity might encounter increased challenges in adhering to a GF diet, given that their financial situation could negatively impact their physical and economic access to GF products as well as their beliefs in being able to adhere to the diet, which may also result in a less positive attitude towards the diet.

    Prior research on food security among people with CeD in the USA has shown an increase of food insecurity among CeD households during the COVID-19 pandemic.22 23 A recent review of national survey data collected in the USA between 2008 and 2014 revealed the negative effects of food insecurity in individuals with CeD. Food insecurity was found to be significantly associated with decreased adherence to a GF diet, as well as a reduced intake of essential nutrients, such as protein, various vitamins and minerals.24 Notably, individuals with CeD already are at higher risk of certain vitamin and mineral deficiencies due to malabsorption, making them particularly vulnerable to the adverse effects of food insecurity. This raises concerns about potential health issues, such as anaemia and low bone density.25 There remains a notable gap in the literature regarding food insecurity among individuals with CeD and NCGS outside of the USA. This is important because different policies exist between countries related to food insecurity as well as financial compensation for the GF diet.

    This study aims to address this by determining the prevalence of food insecurity among individuals with CeD and NCGS in the Netherlands and identifying potential associations between food insecurity and diet quality. Additionally, it seeks to expand on previous research on perceived barriers to adhering to a GF diet by focusing on food insecure (FI) individuals.

    Methods

    Study design and data collection

    This study employed a cross-sectional, mixed-methods study design combining the use of questionnaires and interviews among adults with CeD or NCGS in the Netherlands. First, an anonymous electronic survey was distributed between June and September 2023 through social media accounts (Facebook and Instagram) and the newsletter of the Dutch Association for Celiac Disease. The questionnaire contained several subsections, each addressing different aspects: sociodemographic and lifestyle factors, participant CeD or NCGS status, food insecurity and experienced financial scarcity, dietary intake, experiences with adhering to GF diet (including open questions) and self-reported mental well-being. The full questionnaire translated to English is available in online supplemental additional document 1. The questionnaire was available to participants aged≥18 years and in Dutch only. Further inclusion criteria for analysis were self-reported CeD or NCGS status and following a GF diet. There were a total of 987 survey responses. Incomplete survey responses, responses from participants not dealing with CeD or NCGS and responses from participants not following a GF diet were excluded from the analysis. This resulted in 548 completed questionnaires (online supplemental figure 1).

    Second, we conducted a qualitative exploration through interviews of persons with CeD or NCGS in November 2023, employing an inductive analysis approach. For this, new participants were recruited through social media accounts of the Dutch Association for Celiac Disease. A convenience sample of 11 participants experiencing food insecurity, taking into account the diversity of the sample, were approached. Three participants were unable reach after initial information was provided. In total, eight participants were interviewed. Informed consent using a digital consent form was obtained from all participants. None of the participants who agreed to participate dropped out of the study.

    The study was reviewed by the Medical Ethics Committee of Leiden University Medical Centre (LUMC) and confirmed not to be subject to the Medical Research Involving Human Subjects Act (WMO) (P17.164).

    Survey design and measures

    Self-reported sociodemographic information and lifestyle factors were collected in the survey. Sociodemographic data included age, sex, household size and composition, presence of other people with CeD or NCGS in the household, current employment, net monthly income, educational level and ethnicity. Personal net monthly income was presented in three categories: less than €1500, between €1500 and €2500 and more than €2500. The educational level was classified based on the International Standard Classification of Education26 into a lower educational level (ISCED≤3, up to and including upper secondary education) and higher educational level (ISCED≥4, from postsecondary non-tertiary education). Ethnicity was determined by asking ‘Which ethnicity do you feel most connected to?’ and was categorised as either having a Dutch or non-Dutch ethnicity. Lifestyle factors included height, weight and smoking status (yes/no/in the past). Body Mass Index (BMI, kg/m2) was calculated using the self-reported weight and height. Subsequently, the BMI values were categorised as follows: underweight (BMI<18.5 kg/m2), normal weight (BMI 18.5–25 kg/m2), overweight (BMI 25–30 kg/m2) and obese (BMI≥30 kg/m2), based on the WHO cut-off points.27

    The CeD status of participants was based on self-report and determined with the question: ‘Do you, or someone in your household or someone other close to you have coeliac disease? If so, who?’ Participants were allowed to provide multiple answers. If at least ‘Yes, I have coeliac disease myself’ was answered affirmatively, the participant was considered to have coeliac disease. For NCGS participant status, the identical question was presented, with ‘CeD’ being substituted with ‘gluten sensitivity’. If a participant answered both the CeD question and the NCGS question affirmatively, they were categorised as a CeD participant.

    Food security status was assessed using the USDA 6-item Short Form of the Food Security Survey Module,28 translated to Dutch. ‘GF’ was added in each prompt before ‘food’ or ‘meals’. Food security scores theoretically ranged between 0 and 6 and were presented as two categories: food secure (FS, total score 0–1) and FI (total score 2–6). For a subset analysis, they were divided into three categories: high food security (total score 0–1), low food security (total score 2–4) and very low food security (total score 5–6), according to USDA standards.28

    Experienced financial scarcity was assessed using five selected statements of the 12-item Psychological Inventory of Financial Scarcity (PIFS), translated to Dutch.29 The following statements were included: ‘I often don’t have enough money’, ‘I am constantly wondering whether I have enough money’, ‘I often worry about money’, ‘I am only focusing on what I have to pay at this moment rather than my future expenses’ and ‘I experience little control over my financial situation’. For each statement, the score ranged between a minimum of 1 and maximum score of 5, resulting in a combined score with a theoretical minimum of 5 and maximum of 25, with higher scores indicating higher experienced financial scarcity.

    Self-reported mental well-being was assessed using the WHO well-being index (WHO-5),30 translated to Dutch. The raw score ranged from 0 to 25. A percentage score ranging from 0 to 100 was presented by multiplying the raw score by 4, with 0 representing the worst possible mental well-being and 100 representing the best mental well-being, according to standards.30

    Diet quality was assessed using a short food frequency questionnaire (FFQ), based on current Dutch national dietary intake recommendations from the Dutch Health Council (DHC) and the Netherlands Nutrition Centre (NNC).31 32 The FFQ consisted of questions about 13 food group components, including vegetables, fruit, legumes, unsalted nuts, fish (GF) grain products, dairy, tea, coffee, oils and fats, sugar-containing beverages, savoury and sweet snacks. For each component, a minimum score of 0 and a maximum score of 10 could be obtained, resulting in a total diet score ranging from a theoretical minimum of 0 to a theoretical maximum of 130, with higher scores indicating better adherence to the dietary guidelines. If data were missing for a dietary component, the least favourable outcome was assumed. This occurred in 102 cases (19%) for one dietary component, 17 cases (3%) for two dietary components and in two cases for three and four dietary components (0.8%). Detailed information of the dietary intake assessment and diet quality score calculation is provided in online supplemental table 1.

    Perceived barriers to adhering to a GF diet were analysed using 19 5-point Likert scale statements on the perceived difficulty of GF eating and cooking and seven 5-point Likert scale statements on attitude towards GF products, based on the TPB.19 The statements included topics such as price, availability, quality, variety, nutrition content and eating out and can be found in the questionnaire provided in online supplemental additional document 1.

    Interview design

    Food insecurity status of participants was determined prior to recruitment using the USDA 6-item Short Form of the Food Security Survey Module,28 translated to Dutch. Only participants who where classified as being FI were invited to participate in the interview. Open interviews were conducted by telephone and video calls, following a guided topic list developed based on issues raised in the initial questionnaire. The list included various discussion topics and open-ended example questions for each topic to guide the interviewer. Prior to the interviews, these topics and questions were reviewed and discussed by the research team. Interviews started with general inquiries about the participants’ backgrounds and living situations to establish rapport and put the participants at ease. Subsequently, the questions delved into their experiences with adhering to a GF diet, covering aspects such as costs, availability and social implications. The interviewees were encouraged to introduce any additional topics of interest to them during the conversation. After each interview, the topic list was reassessed, and adjustments or new topics were incorporated as necessary, reflecting emerging themes from the discussions. The full interview guide translated to English is available as online supplemental additional document 2. During the interviews, only the participant and interviewer were present. All interviews were audio-recorded using a digital voice recorder or online recording software and transcribed verbatim. Interviews were scheduled at times convenient for the participants. Written informed consent was obtained from all participants. Participants received a €20 gift card for their participation.

    Survey statistical analysis

    Statistical analyses were performed using IBM SPSS Statistics V.29. Subject and household characteristics were described as mean (SD) for continuous variables and frequencies and percentages for categorical variables. Differences between the FS and FI group were assessed with Mann–Whitney U testing for continuous variables and χ2 testing for categorical variables. In four cases (0.8%), implausible answers were observed. In two cases, these were answers to the question on household size and were corrected based on further information that was provided in the questionnaire. In the two other cases, these were answers to the question on body weight and data were imputed based on the median body weight of other respondents with identical body heights.

    An explanatory factor analysis was run on the 19 5-point Likert statements about the perceived difficulty of GF eating and cooking. Statements were combined into one component based on the pattern matrix using Direct Oblimin factor rotation with 0.4 as minimal loading. The component scores were calculated by combining the scores of the separate statements and dividing them by the number of statements, resulting in a theoretical minimum score of 1 and maximum score of 5 for each component. For each component, scores were then dichotomised into disagreeing (scores 1–3) or agreeing (scores 4–5) with the statements. The seven 5-point Likert scale statements on attitude towards GF products were combined into one by adding the scores of the separate statements together and dividing them by the number of statements, resulting in a theoretical minimum score of 1 and maximum score of 5, with higher scores indicating a more positive attitude towards GF products.

    Multiple linear regression analysis was conducted to investigate the association between food insecurity and diet quality. The analysis was performed using the continuous total diet quality score as the dependent variable. Two models were presented. For the first (crude) model, food security status was analysed as an independent variable in three categories: FS, low FS and very low FS. The second model was adjusted for age, educational level and net monthly income.

    Logistic regression analyses were conducted to study the association between food insecurity and the perceived difficulty of GF eating and cooking. The analyses were performed with the components resulting from the factor analysis as dependent variables. Two models were presented for each component. For the first (crude) model, food security status was analysed as an independent variable in three categories: FS, low FS and very low FS. The second model was adjusted for age, educational level and net monthly income.

    A two-sided p value of 0.05 was considered statistically significant for all analyses.

    Qualitative analysis

    A general inductive approach was used to analyse the qualitative data. Parts of the interview transcripts were coded using open coding. Some text segments were assigned more than one code category and text segments that were not relevant for the study objectives were not included in any category. Throughout this process, some codes with similar meanings were merged. Codes and code assignment was discussed within the research team. Codes were grouped into themes. The software Atlas.ti V.23.2.3 was used to assist with the coding process and extraction of quotes and themes.

    Patient and public involvement

    The director and information manager of the Dutch Association for Celiac Disease were involved in participant recruitment and advise regarding the questionnaire and interview content, to ensure that the questions were relevant and understandable.

    Results

    Questionnaire

    Participant characteristics

    In total, 548 participants were included in the analysis. The overall prevalence of food insecurity was 23.2%; 12.8% of participants experienced low food security and 10.4% experienced very low food security (online supplemental table S2). Table 1 summarises the characteristics of the survey respondents for the total population and by food security status. Most participants were female (90.3%) and had CeD (86.7%). The mean age of the total study sample was 44.7±14.6 years. The majority of the participants were of Dutch ethnicity. Compared with FS participants, FI participants were often younger, had a lower income and a lower educational level. FI participants had a higher mean financial scarcity score (ie, had a stronger perceived financial scarcity) and a lower WHO-5 score (ie, had a poorer perceived mental well-being) compared with FS participants.

    View this table:
    Table 1

    Sociodemographic characteristics of participants (total n=548)

    Food insecurity and diet quality

    The mean diet quality score out of a maximum score of 130 was 74.9±13.0 for FS participants, 72.1±12.6 for low FS participants and 69.4±15.0 for very low FS participants (data not shown). Food insecurity was associated with a significantly lower diet quality score compared with FS participants in very low FS participants (β=−5.5; 95% CI=−9.2 to –1.9; p=0.003), but not low FS participants (β=−2.8; 95% CI= −6.1 to 0.6; p=0.105). Controlling for age, income and education, the association remained statistically significant for very low FS participants (table 2).

    View this table:
    Table 2

    Associations between food security status and diet quality

    Food insecurity and perceived barriers to adherence to a GF diet

    Perceived difficulty of gluten-free eating and cooking

    The factor analysis of statements on the perceived difficulty of GF eating and cooking resulted in four components with total initial eigenvalues greater than 1, explaining 67.2% of total variance. Component 1 comprised six statements regarding skills in GF cooking (eg, healthy, tasteful), which explained 46.1% of the variance with factor loadings from 0.7 to 0.8. Component 2 comprised five statements regarding social circumstances (eg, with friends and in restaurants), which explained 7.8% of the variance with factor loadings from 0.5 to 0.9. Component 3 comprised six statements regarding resources (eg, money and time), which explained 6.9% of the variance with factor loadings from 0.6 to 0.8. Component 4 comprised two statements regarding naturally GF products, which explained 6.3% of the variance with factor loadings from 0.9 to 0.9. A comprehensive breakdown of the statements that make up each component can be found in Additional Document 3.

    FI participants were significantly more likely to experience difficulty with GF eating and cooking across all four components compared with FS participants (table 3). In the age, income and education adjusted model, low FS participants were more likely to experience difficulty regarding skills (OR=2.5; 95% CI=1.5 to 4.3; p≤0.001), social circumstances (OR=2.6; 95% CI=1.1 to 6.4; p=0.038), resources (OR=2.5; 95% CI=1.5 to 4.4; p=0.001) and naturally GF products (OR=1.8; 95% CI=1.0 to 3.1; p=0.045) in GF eating and cooking compared with FS participants. In the adjusted model, participants with very low FS were more likely to experience difficulty regarding skills (OR=4.4; 95% CI=2.4 to 8.1; p≤0.001) and resources (OR=4.2; 95% CI=2.3 to 7.8; p<0.001) in GF eating and cooking as well. Compared with the crude model, the ORs were slightly lower in the adjusted model regarding social circumstances and naturally GF products and not statistically significant in very low FS participants (table 3).

    View this table:
    Table 3

    Associations between food security status and perceived difficulty of gluten-free eating and cooking

    Attitude towards gluten-free products

    The mean attitude towards GF products, with scores ranging from 1 (most negative attitude) to 5 (most positive attitude), was 2.4±0.6 for FS participants, 2.1±0.5 for low FS participants and 2.06±0.65 for very low FS participants (data not shown). Table 4 shows two models regarding the associations between food insecurity and attitude towards GF products. Food insecurity was significantly associated with having a lower attitude score (ie, a more negative attitude) towards GF products in both models, with similar results in low and very low FS participants.

    View this table:
    Table 4

    Associations between food security status and attitude towards gluten-free products

    Interviews

    In total, eight interviews were conducted, with durations ranging from 40 to 57 minutes, averaging 47 minutes.

    Participant characteristics

    One male and seven females were interviewed, aged between 20 and 57 years. All participants were FI, two of whom experienced very low food security. The number of years on the GF diet varied between 1 and 23 years (table 5).

    View this table:
    Table 5

    Sociodemographic characteristics of participants (n=8)

    Key themes related to perceived barriers to adhering to a gluten-free diet

    The participants shared various perceived barriers to adhering to a GF diet, as well as some facilitators, within four overarching emerging themes. The four main themes related to perceived barriers to adhering to a GF diet, along with their corresponding subthemes identified in the analysis, are described below and visually represented in online supplemental table 3. Further clarification of these themes is offered through excerpts from the interview transcripts.

    Resources

    In all cases, participants reported higher costs associated with adhering to a GF diet. Many struggled to quantify the exact amount spent on GF products. One participant commented: ‘In a week I eat two to three loaves of bread and a pack or two packs of crackers, so you can easily spend almost €25 to €30 just for the specific GF bread and crackers’ (participant 7).

    For seven participants, costs were the reason to buy fewer specific GF products than they would prefer. This included sweet snacks, such as GF cookies, as well as staple products such as GF breads and pasta. For instance, one interviewee stated: ‘We have a three day weekend together and I used to have nice bread every morning. Yes, now I only buy one pack of bread, so I only buy bread for 1.5 days. With snacks, I also try to be more frugal with what I eat. So yes, I now pay more attention to the quantities. Where I would normally eat more from the gluten-free shelf, I now think “No”’ (participant 5).

    Other strategies adopted in response to costs included only buying discounted products, baking their own bread, receiving GF food from family, working more hours or implementing energy-saving measures. One participant mentioned indirect cost savings due to the increased difficulty of dining in restaurants and cafés. None of the participants felt driven by financial considerations to consume gluten-containing meals, particularly due to the symptoms they encountered after ingesting gluten.

    Regarding the current Dutch diet costs tax compensation, all participants were aware of its existence. While a few participants expressed appreciation for its existence, criticisms of the current system were voiced. This included ambiguity in the process, the annual requirement to provide evidence for CeD, despite it being a lifelong condition, ineligibility for compensation due to various reasons and dissatisfaction with the compensated amount not aligning with the actual expenditure on GF products. In discussing this matter, one interviewee said: ‘Well, I don’t get it. I always find it difficult to search every year: “Hey, where should I be again? What am I supposed to do again?” So I just think it’s poorly indicated and I also think that a lot of people who have celiac disease don’t know about it’ (participant 2).

    Only a minority of respondents indicated that the time required to follow a GF diet was a concern, primarily due to time spent reading labels in supermarkets, time spent baking GF products at home or time spent preparing separate meals from family members.

    Four participants highlighted the usefulness of online resources, such as GF themed Instagram accounts, GF restaurant apps and general online restaurant information. These resources were found to be helpful for inspiration, staying informed about GF foods and simplifying the process of eating out. One participant commented: ‘Nowadays, of course, many menus are available online. I really like that, because then I can think about “Okay, that’s a possibility and it comes with that sauce, so 9 times out of 10 that’s not good, maybe they can change that?”’ (participant 8).

    Social circumstances

    Most participants reported challenges in adhering to a GF diet in social situations. Six participants highlighted difficulties when dining out in restaurants. All of them emphasised the need for pre-research or contacting the restaurants in advance. Five participants noted a lack of knowledge in restaurants, with one expressing: ‘But if you were to just go to a restaurant, there is often not much knowledge and nothing at all about cross-contamination’ (participant 3). Limited options in restaurants and menu choices in restaurants also emerged as a recurring issue.

    Another concern raised was the constant need to check for cross-contamination handling. Regarding this, one participant shared: ‘But I still notice when I walk into a coffee shop or something, sometimes you are lucky that there is an option. But if that option is available, you should also check “Are there any gluten products standing next to it?” Or is it a business that understands that gluten-free bread should be kept separate?’ (participant 4). There were a few negative experiences shared, where mistakes had been made by the restaurants, even after double checking and pointing out the diet.

    In social situations with friends, participants often had to double-check and address mistakes. However, many noted an understanding and benevolence among friends. One participant expressed: ‘My friends, they don’t know any better. So when I come for coffee, they always have something sweet for me’ (participant 1)

    Five participants mentioned instances when their GF diet was not being taken seriously unless they explicitly mentioned having CeD, rather than just following a GF diet for personal reasons. For example, one said: ‘Yes, as long as you don't mention the disease, they really have the idea that it is just to lose weight and that you would just eat a croquette at home or something’ (participant 5). Four individuals linked this perception to the GF diet being a trend of sorts. While two participants acknowledged the trend, they found it to have a positive effect on the overall understanding of GF diets.

    All participants mentioned feeling restricted when travelling due to the potential scarcity of GF options in supermarkets and restaurants abroad. The majority addressed this concern by bringing their own GF foods on vacation. As one participant noted: ‘Well, we always went camping, but I always had an extra crate of gluten-free food with me, just in case’ (participant 8). However, five participants expressed that it was easier to follow a GF diet in some countries than in the Netherlands, citing better options and knowledge, with Italy being mentioned most frequently.

    At home, the majority of participants highlighted that their home kitchen situation was well arranged and issues at home were very rare.

    Gluten-free products

    All participants concurred on feeling restricted by the limited availability of GF products in supermarkets. In general, most expressed a desire for more variety in the options. As one participant articulated: ‘I think maybe sometimes you miss the choice. When you look at what you could get if you are not gluten-free, you think, oh yeah…’ (participant 3).

    The majority noted variations in offerings across supermarkets, with some having almost no GF options. Consequently, four participants mentioned deliberately travelling to a more distant supermarket to access a broader selection. Additionally, five participants occasionally ordered GF products online, especially those unavailable in local supermarkets, although they acknowledged this was infrequent due to higher prices. Five participants did mention an increase in GF products compared with previous years.

    Four participants raised concerns about many products having ‘traces of’ gluten, making it challenging to find truly GF options. One participant with lactose intolerance also found it difficult to locate GF products without other allergens such as soy or lactose.

    Several participants expressed frustration with the unreliability of the GF product offerings. This unreliability appeared in the form of either an inability to rely on the consistent availability of GF products in specific supermarkets or uncertainties about changes in product composition. One individual stated: It also happens quite often that products suddenly change in composition and that the manufacturer suddenly adds gluten. So that’s annoying too. That is quite often, that the products I always bought suddenly contain gluten. You think, why does that have to happen? (participant 2).

    Quality concerns also emerged, with three participants expressing dissatisfaction with the taste of some GF products. However, two of them did concur that, overall, they were able to maintain a flavorful diet, while two others recognised a general improvement in taste compared with previous years. Six participants highlighted issues with the healthiness of GF products, citing high sugar content and low fibre as common concerns. One participant explained: ‘Because 90% of what is in the store is simply unhealthy. That’s basically the fast food for people with celiac disease. If you go to the store tomorrow, I instruct you to find whole grain gluten-free bread. You’ll notice it’s just not there. So everyone with celiac disease is almost forced to eat white bread’ (participant 6).

    Five participants noted that GF or crossed grain logos made shopping easier, eliminating the need to read labels. However, this logo is not consistently accessible in many supermarkets.

    Mental well-being

    There were several prevalent subthemes within the realm of mental well-being that emerged from the interviews. In the personal domain, a recurrent sentiment revolved around feeling on edge or paranoid in eating situations, making it challenging to relax. Expressing this sentiment, one participant remarked: ‘You have to constantly pay attention to everything. That’s annoying’ (participant 5). Another participant highlighted the struggle by mentioning: ‘Sometimes it’s just easier that I think “Phew, just leave me at home and then I can decide for myself what I eat and…” Sometimes you just have to pay so much attention and you just don’t always feel like it’ (participant 8).

    Five participants felt that having to follow a GF diet was a limitation and/or difficulty. One interviewee, when asked about how they experienced having to follow a GF diet, answered: ‘Like a prison’ (participant 6). However, contrasting views were present, with another participant expressing a positive outlook due to the experienced relief of symptoms.

    In terms of feelings towards others, six participants revealed a common sentiment of feeling like a burden to those around them. As one participant put it: ‘Because I always feel a little uncomfortable towards other people. When I eat with others or in restaurants, they always have to do a lot more for me. In addition, you also have to check a bit whether it truly went well, so I always feel very embarrassed towards other people and I especially find that very sad’ (participant 5).

    Another recurring theme was the mental load associated with adhering to the GF diet, requiring constant thought about food-related considerations. One participant illustrated this, saying: ‘For example, if I go somewhere, to another city or whatever, I have to think carefully about: “How long will I be there? Should I take something with me? Or should I just eat beforehand and be fine? Or are there any shops nearby that I know I can go to?” I always have to think about that’ (participant 4).

    A prevalent sentiment throughout the interviews was the acceptance of the limitations that accompany following a GF diet. Participants described this acceptance as ‘being used to it’, ‘getting over it’ or ‘putting it in perspective’. One participant stated: ‘Well, I’ve been doing it for a long time now, so you’re already used to a lot of things and you know how it works, so to speak’ (participant 3). Another participant noted: ‘For example, my sister and my brother, both of them don’t have it [coeliac disease], so I’m always jealous of that. Well, I’d like to trade for a day, wouldn’t I? But hey, I always say, there are always worse things. And at some point, you have such an understanding and know what it is all about…’ (participant 1).

    Discussion

    This study aimed to characterise food insecurity among Dutch individuals with CeD and NCGS, revealing that a substantial proportion (23%) was FI, with 10% facing very low food security. Food insecurity was associated with younger age, having a lower income and lower educational level, higher perceived financial scarcity and poorer mental well-being. Furthermore, very low food insecurity was associated with a lower diet quality score. Our comprehensive exploration of perceived barriers to adhering to a GF diet, through both quantitative and qualitative approaches, exposes multifaceted challenges in FI individuals across several domains, including resources, social circumstances, GF products and mental well-being.

    The prevalence of food insecurity in our study was similar to previous reported data from the USA among individuals with CeD,23 24 and higher than previous reported data among a general sample of adults with a relatively low socioeconomic position living in the Netherlands.33 Our findings confirm the established correlation between food insecurity, lower income and educational level.34 Another observation is that participants experiencing food insecurity tended to be younger. Compared with other age groups, young adults generally experience quick changes in responsibilities (eg, providing for themselves while generally having limited financial resources and potentially less stable employment options) which may increase their risk of experiencing food insecurity, which is also described in other studies.35–37 Additionally, an association between food insecurity and perceived financial scarcity was identified, which highlights financial difficulties that FI participants may have in other aspects of their lives. Recognising the potential combined impact of financial scarcity and food insecurity is crucial, as previous research has linked financial difficulties to adverse health outcomes and diminished overall well-being.38

    Results of our study revealed an association between a lower diet quality and food insecurity. This finding aligns with previous studies that also identified a connection between food insecurity and diet quality,39–41 extending to individuals following a GF diet.24 The observation that only those experiencing very low food security exhibited a lower diet quality in this study suggests that there may be a nuanced relationship between different levels of food security and diet quality, with very low food security having a more pronounced impact. Notably, unlike some previous studies which identified an association between food insecurity and obesity,42 43 we found no association between food insecurity and BMI in our study. This indicates potential variations in the impact of food insecurity on body weight across different populations. While the association between food insecurity and obesity is most pronounced in women, results for men and children are mixed.44 Moreover, longitudinal studies provide limited evidence to suggest that food insecurity leads to increased weight gain over time,45 46 while one study showed women who were persistently FI gained less weight over time.47 Another possible explanation for the absence of this association could be the GF diet limiting food choices and potentially reducing the overall caloric intake from energy-dense options commonly associated with food insecurity, potentially mitigating the effects of food insecurity on BMI. Additionally, individuals with CeD typically have lower BMIs compared with the general population,48 which could also contribute to the lack of association observed in our study.

    The study sheds light on the mental and emotional challenges associated with adhering to a GF diet, revealing feelings of restriction, burden and the need for constant vigilance. Our research indicated a lower self-reported mental well-being in all participants with CeD and NCGS compared with the average Dutch population, based on the most recent data available from 2016,49 aligning with previous studies emphasising the impact of adhering to a GF diet on mental health.50 51 Previous studies report potential mechanisms that may explain the association between CeD and psychological morbidities, including dietary restrictions and compromised social relationships,52 which may be even more affected when people are experiencing food insecurity. Noteworthy, we observed that self-reported mental well-being was even lower among FI individuals, echoing results from a prior study reporting lower mental health among FI individuals on a GF diet.53 This underscores the potential contribution of food insecurity to an increased risk of worsened mental health in people with CeD and NCGS.

    Building on previous research that identified common barriers into adhering to a GF diet,54–56 our results emphasise heightened barriers for FI individuals across various areas. Unsurprisingly, the availability of resources was a significant experienced barrier in adhering to the GF diet. Moreover, our exploration revealed intensified challenges extending beyond economic constraints, including social circumstances and aspects related to GF products. Although social circumstances and naturally GF products did not retain statistical significance in the adjusted model for individuals with very low food security, the persistent trend suggests that the lack of significance might be attributed to statistical considerations, concerning subgroup size. While our survey did not assess GF diet adherence, previous research reported an increase in intentional gluten ingestion among individuals experiencing food insecurity.24 Additionally, research suggests that adherence might be related to perceived barriers.57 58 Though none of the participants in our interviews mentioned deliberately eating gluten, it is important to recognise that our study had a limited number of participants, and thus, the absence of such reports may not fully represent the broader population. Additionally, the established correlation between gluten ingestion and reduced nutritional uptake25 could be exacerbated by our observation that individuals experiencing food insecurity tend to have a lower diet quality. Given its implications for nutritional status and overall health outcomes, intentional gluten ingestion among FI people with CeD remains a possible area of concern.

    Several strengths of this study can be acknowledged. First, it offers previously unexplored insights into food insecurity among individuals with CeD and NCGS in the Netherlands. Second, by employing a mixed-methods study design, we gained further insight into understanding the challenges individuals face. However, it is important to also recognise limitations of the current study. First, the cross-sectional design of our study makes it impossible to draw causal conclusions regarding factors associated with food insecurity. However, it is more plausible that food insecurity lies within the causal pathway of diet quality and perceived barriers rather than the reverse. Second, this study was based on self-reported data through anonymous surveys, which introduces the possibility of recall bias and social desirability bias, leading to potential inaccuracies in the data. Additionally, the reliance on self-reported diagnoses of CeD and NCGS lacks the accuracy of clinical confirmation which may impact the adherence to a GF diet and potentially impact experienced food insecurity. Third, the study participants were recruited through the Dutch Celiac Association, thus the characteristics of the study population might not be reflective of the larger population of people with CeD and NCGS in the Netherlands. Previous findings linked membership of CeD advocacy groups with improved GF diet adherence, suggesting a potential bias towards a more health-conscious sample.59 However, given the nature of the online survey research, alternate options for recruitment were essentially limited. Fourth, the gender distribution exhibited a significant imbalance (90% female), which can be attributed in part to the higher prevalence of CeD in females60 and the pre-existing disparity in the Dutch Celiac Association database, where 70% are female (personal communication Dutch Celiac Association, January 2024). Additionally, this skew may be influenced by potential differences in willingness to participate in such surveys between genders.61 Given that food insecurity has been shown to be more prevalent in woman-led households,62 the high proportion of female respondents in our study may result in an overestimation of the prevalence in the general population. Male FI individuals might experience different barriers to adhering to a GF diet compared with females, which could result in some potential barriers being overlooked in this study. Future studies should critically evaluate and adjust recruitment strategies to achieve a more balanced gender representation. Finally, it should be noted that parts of the questionnaire were not previously validated, such as the addition of ‘GF’ to the USDA 6-item food security scale. Thus, the interpretation of responses regarding food insecurity might be limited to the concept of ‘GF food insecurity’, which has been previously described in otherwise food-secure households.23 This perception was reinforced during the interviews, as most participants acknowledged having sufficient funds for food in general, yet encountered challenges in affording specific GF options.

    Conclusions and implications

    In conclusion, our findings reveal that food insecurity is prevalent among people with CeD and NCGS in the Netherlands and indicate an association with poorer diet quality and higher perceived barriers to adhering to a GF diet. As there is a close link between perceived behavioural control and actual behaviour, interventions to reduce food insecurity could be developed by focusing on diminishing barriers in perceived behavioural control, for example related to specific skills to prepare healthy GF meals with a limited budget. The exploration of perceived barriers provides a deeper understanding of the specific challenges faced by FI individuals with CeD and NCGS.

    Clinicians should take these challenges into account in their recommendations to individuals with CeD and NCGS that may experience food insecurity. Furthermore, insights from this study underscore the need for public initiatives to address the multifaceted impact of food insecurity in this population and may inform policy makers to develop targeted interventions to improve access to GF foods. Future research should focus on enhancing our understanding of these complex dynamics to inform evidence-based interventions for improving access to GF diets for FI individuals with CeD and NCGS.

    Data availability statement

    Data are available upon reasonable request.

    Ethics statements

    Patient consent for publication

    Ethics approval

    This study involves human participants but the study was reviewed by the Medical Ethics Committee of Leiden University Medical Centre (LUMC) and confirmed not to be subject to the Medical Research Involving Human Subjects Act (WMO) (P17.164). Participants gave informed consent to participate in the study before taking part.

    Acknowledgments

    We thank all participants for their time and effort to participate in our study. We gratefully acknowledge Floris van Overveld, the director of the Dutch Association for Celiac Disease for his insights regarding the study topic, and Marieke Pons, information manager of the Dutch Association for Celiac Disease, for her help with participant recruitment.

    References

    1. ↵
      1. Word Food Summit
      . Rome declaration on world food security and world food summit plan of action. 1996.
    2. ↵
      1. Carrillo-Álvarez E,
      2. Salinas-Roca B,
      3. Costa-Tutusaus L, et al
      . The Measurement of Food Insecurity in High-Income Countries: A Scoping Review. Int J Environ Res Public Health 2021;18:9829. doi:10.3390/ijerph18189829
    3. ↵
      1. Paslakis G,
      2. Dimitropoulos G,
      3. Katzman DK
      . A call to action to address COVID-19-induced global food insecurity to prevent hunger, malnutrition, and eating pathology. Nutr Rev 2021;79:114–6. doi:10.1093/nutrit/nuaa069
      OpenUrl
    4. ↵
      1. Loopstra R,
      2. Reeves A,
      3. Tarasuk V
      . The rise of hunger among low-income households: an analysis of the risks of food insecurity between 2004 and 2016 in a population-based study of UK adults. J Epidemiol Community Health 2019;73:668–73. doi:10.1136/jech-2018-211194
      OpenUrlAbstract/FREE Full Text
    5. ↵
      1. Byker Shanks C,
      2. Andress L,
      3. Hardison-Moody A, et al
      . Food Insecurity in the Rural United States: An Examination of Struggles and Coping Mechanisms to Feed a Family among Households with a Low-Income. Nutrients 2022;14:5250. doi:10.3390/nu14245250
    6. ↵
      1. Dabone C,
      2. Mbagwu I,
      3. Muray M, et al
      . Global Food Insecurity and African, Caribbean, and Black (ACB) Populations During the COVID-19 Pandemic: a Rapid Review. J Racial Ethn Health Disparities 2022;9:420–35. doi:10.1007/s40615-021-00973-1
      OpenUrl
    7. ↵
      1. Nikolaus CJ,
      2. Johnson S,
      3. Benally T, et al
      . Food Insecurity among American Indian and Alaska Native People: A Scoping Review to Inform Future Research and Policy Needs. Adv Nutr 2022;13:1566–83. doi:10.1093/advances/nmac008
      OpenUrl
    8. ↵
      1. Leung CW,
      2. Wolfson JA
      . Food Insecurity Among Older Adults: 10-Year National Trends and Associations with Diet Quality. J Am Geriatr Soc 2021;69:964–71. doi:10.1111/jgs.16971
      OpenUrl
    9. ↵
      1. Mavegam Tango Assoumou BO,
      2. Coughenour C,
      3. Godbole A, et al
      . Senior food insecurity in the USA: a systematic literature review. Public Health Nutr 2023;26:229–45. doi:10.1017/S1368980022002415
      OpenUrl
    10. ↵
      1. Neter JE,
      2. Dijkstra SC,
      3. Visser M, et al
      . Food insecurity among Dutch food bank recipients: a cross-sectional study. BMJ Open 2014;4:e004657. doi:10.1136/bmjopen-2013-004657
    11. ↵
      1. van der Velde LA,
      2. Nyns CJ,
      3. Engel MD, et al
      . Exploring food insecurity and obesity in Dutch disadvantaged neighborhoods: a cross-sectional mediation analysis. BMC Public Health 2020;20:569. doi:10.1186/s12889-020-08611-x
    12. ↵
      1. Scurlock AM,
      2. Brown E,
      3. Davis CM
      . Food insecurity in children and adults with food allergies. Ann Allergy Asthma Immunol 2022;129:424–9. doi:10.1016/j.anai.2022.08.012
      OpenUrl
    13. ↵
      1. Catassi C,
      2. Verdu EF,
      3. Bai JC, et al
      . Coeliac disease. Lancet 2022;399:2413–26. doi:10.1016/S0140-6736(22)00794-2
      OpenUrl
    14. ↵
      1. Marchioni Beery RM,
      2. Birk JW
      . Wheat-related disorders reviewed: making a grain of sense. Expert Rev Gastroenterol Hepatol 2015;9:851–64. doi:10.1586/17474124.2015.1032252
      OpenUrl
    15. ↵
      1. Panagiotou S,
      2. Kontogianni MD
      . The economic burden of gluten-free products and gluten-free diet: a cost estimation analysis in Greece. J Hum Nutr Diet 2017;30:746–52. doi:10.1111/jhn.12477
      OpenUrl
    16. ↵
      1. Myhrstad MCW,
      2. Slydahl M,
      3. Hellmann M, et al
      . Nutritional quality and costs of gluten-free products: a case-control study of food products on the Norwegian marked. Food Nutr Res 2021;65. doi:10.29219/fnr.v65.6121
    17. ↵
      1. Eurostat
      . n.d. Food Price Monitoring Tool. Harmonized index of consumer prices.
    18. ↵
      1. MacCulloch K,
      2. Rashid M
      . Factors affecting adherence to a gluten-free diet in children with celiac disease. Paediatr Child Health 2014;19:305–9. doi:10.1093/pch/19.6.305
      OpenUrl
    19. ↵
      1. Ajzen I
      . The theory of planned behavior. Organ Behav Hum Decis Process 1991;50:179–211. doi:10.1016/0749-5978(91)90020-T
      OpenUrlCrossRefWeb of Science
    20. ↵
      1. Sainsbury K,
      2. Mullan B
      . Measuring beliefs about gluten free diet adherence in adult coeliac disease using the theory of planned behaviour. Appetite 2011;56:476–83. doi:10.1016/j.appet.2011.01.026
      OpenUrlCrossRefPubMed
    21. ↵
      1. Kothe EJ,
      2. Sainsbury K,
      3. Smith L, et al
      . Explaining the intention-behaviour gap in gluten-free diet adherence: The moderating roles of habit and perceived behavioural control. J Health Psychol 2015;20:580–91. doi:10.1177/1359105315576606
      OpenUrlCrossRefPubMed
    22. ↵
      1. Guillaume JD,
      2. Jagai JS,
      3. Makelarski JA, et al
      . COVID-19-Related Food Insecurity Among Households with Dietary Restrictions: A National Survey. J Allergy Clin Immunol Pract 2021;9:3323–30. doi:10.1016/j.jaip.2021.06.015
      OpenUrl
    23. ↵
      1. Du N,
      2. Mehrotra I,
      3. Weisbrod V, et al
      . Survey-Based Study on Food Insecurity During COVID-19 for Households With Children on a Prescribed Gluten-Free Diet. Am J Gastroenterol 2022;117:931–4. doi:10.14309/ajg.0000000000001778
      OpenUrl
    24. ↵
      1. Ma C,
      2. Singh S,
      3. Jairath V, et al
      . Food Insecurity Negatively Impacts Gluten Avoidance and Nutritional Intake in Patients With Celiac Disease. J Clin Gastroenterol 2022;56:863–8. doi:10.1097/MCG.0000000000001646
      OpenUrl
    25. ↵
      1. Dennis M,
      2. Lee AR,
      3. McCarthy T
      . Nutritional Considerations of the Gluten-Free Diet. Gastroenterol Clin North Am 2019;48:53–72.
      OpenUrl
    26. ↵
      1. UNESCO Institute for Statistics
      . International standard classification of education (isced) 2011. Comp Soc Res 2012. Available: http://uis.unesco.org/sites/default/files/documents/international-standard-classification-of-education-isced-2011-en.pdf
    27. ↵
      1. World Health Organization
      . Obesity: preventing and managing the global epidemic: report of a WHO consultation. 2000.
    28. ↵
      1. United States Department of Agriculture (USDA)
      . U.S. Household Food Security Survey Module: Six-Item Short Form. 2012.
    29. ↵
      1. van Dijk WW,
      2. van der Werf MMB,
      3. van Dillen LF
      . The Psychological Inventory of Financial Scarcity (PIFS): A psychometric evaluation. J Behav Exp Econ 2022;101:101939. doi:10.1016/j.socec.2022.101939
      OpenUrl
    30. ↵
      1. World Health Organization
      . Wellbeinag measures in primary health care/the DepCare project: report on a WHO meeting. Stockholm, Sweden: World Health Organization, Regional Office for Europe, 1998.
    31. ↵
      1. Health Council of the Netherlands
      . Dutch dietary guidelines 2015. The Hague Health Council of the Netherlands, 2015.
    32. ↵
      1. Brink L,
      2. Postma-Smeets A,
      3. Stafleu A, et al
      . Richtlijnen Schijf van Vijf (Wheel of Five Guidelines). The Hague Health Council of the Netherlands, 2016.
    33. ↵
      1. van der Velde LA,
      2. Numans ME,
      3. Kiefte-de Jong JC
      . Changes in perceived food insecurity and eating behavior in the Netherlands since the COVID-19-crisis. TSG 2021;99:83–94. doi:10.1007/s12508-021-00311-0
      OpenUrl
    34. ↵
      1. Grimaccia E,
      2. Naccarato A
      . Food Insecurity Individual Experience: A Comparison of Economic and Social Characteristics of the Most Vulnerable Groups in the World. Soc Indic Res 2019;143:391–410. doi:10.1007/s11205-018-1975-3
      OpenUrl
    35. ↵
      1. Bocquier A,
      2. Vieux F,
      3. Lioret S, et al
      . Socio-economic characteristics, living conditions and diet quality are associated with food insecurity in France. Public Health Nutr 2015;18:2952–61. doi:10.1017/S1368980014002912
      OpenUrlCrossRefPubMed
    36. ↵
      1. Maia I,
      2. Monjardino T,
      3. Lucas R, et al
      . Household food insecurity and socio-demographic determinants in young adults: findings from a Portuguese population-based sample. Int J Public Health 2019;64:887–95.
      OpenUrl
    37. ↵
      1. Baer TE,
      2. Scherer EA,
      3. Fleegler EW, et al
      . Food Insecurity and the Burden of Health-Related Social Problems in an Urban Youth Population. J Adolesc Health 2015;57:601–7.
      OpenUrlCrossRefPubMed
    38. ↵
      1. Sommet N,
      2. Spini D
      . Financial scarcity undermines health across the globe and the life course. Soc Sci Med 2022;292:114607.
      OpenUrl
    39. ↵
      1. Leung CW,
      2. Epel ES,
      3. Ritchie LD, et al
      . Food insecurity is inversely associated with diet quality of lower-income adults. J Acad Nutr Diet 2014;114:1943–53. doi:10.1016/j.jand.2014.06.353
      OpenUrlCrossRef
    40. ↵
      1. Nettle D,
      2. Bateson M
      . Food-Insecure Women Eat a Less Diverse Diet in a More Temporally Variable Way: Evidence from the US National Health and Nutrition Examination Survey, 2013-4. J Obes 2019;2019:7174058. doi:10.1155/2019/7174058
    41. ↵
      1. Lopes SO,
      2. Abrantes LCS,
      3. Azevedo FM, et al
      . Food Insecurity and Micronutrient Deficiency in Adults: A Systematic Review and Meta-Analysis. Nutrients 2023;15. doi:10.3390/nu15051074
    42. ↵
      1. Moradi S,
      2. Mirzababaei A,
      3. Dadfarma A, et al
      . Food insecurity and adult weight abnormality risk: a systematic review and meta-analysis. Eur J Nutr 2019;58:45–61.
      OpenUrl
    43. ↵
      1. Keenan GS,
      2. Christiansen P,
      3. Hardman CA
      . Household Food Insecurity, Diet Quality, and Obesity: An Explanatory Model. Obesity (Silver Spring) 2021;29:143–9. doi:10.1002/oby.23033
      OpenUrl
    44. ↵
      1. Morales ME,
      2. Berkowitz SA
      . The Relationship between Food Insecurity, Dietary Patterns, and Obesity. Curr Nutr Rep 2016;5:54–60. doi:10.1007/s13668-016-0153-y
      OpenUrl
    45. ↵
      1. Jones SJ,
      2. Frongillo EA
      . Food insecurity and subsequent weight gain in women. Pub Health Nutr 2007;10:145–51. doi:10.1017/S1368980007246737
      OpenUrl
    46. ↵
      1. Whitaker RC,
      2. Sarin A
      . Change in food security status and change in weight are not associated in urban women with preschool children. J Nutr 2007;137:2134–9. doi:10.1093/jn/137.9.2134
      OpenUrlAbstract/FREE Full Text
    47. ↵
      1. Jones SJ,
      2. Frongillo EA
      . The modifying effects of Food Stamp Program participation on the relation between food insecurity and weight change in women. J Nutr 2006;136:1091–4. doi:10.1093/jn/136.4.1091
      OpenUrlAbstract/FREE Full Text
    48. ↵
      1. Barone M,
      2. Iannone A,
      3. Cristofori F, et al
      . Risk of obesity during a gluten-free diet in pediatric and adult patients with celiac disease: a systematic review with meta-analysis. Nutr Rev 2023;81:252–66. doi:10.1093/nutrit/nuac052
      OpenUrl
    49. ↵
      1. Eurofound
      . European Quality of Life Survey 2016, Available: https://www.eurofound.europa.eu/en/data-catalogue/european-quality-life-survey
    50. ↵
      1. C D,
      2. Berry N,
      3. Vaiphei K, et al
      . Quality of life in celiac disease and the effect of gluten‐free diet. JGH Open 2018;2:124–8. doi:10.1002/jgh3.12056
      OpenUrl
    51. ↵
      1. Fera T,
      2. Cascio B,
      3. Angelini G, et al
      . Affective disorders and quality of life in adult coeliac disease patients on a gluten-free diet. Eur J Gastroenterol Hepatol 2003;15:1287–92. doi:10.1097/00042737-200312000-00006
      OpenUrlCrossRefPubMed
    52. ↵
      1. Zingone F,
      2. Swift GL,
      3. Card TR, et al
      . Psychological morbidity of celiac disease: A review of the literature. UEG Journal 2015;3:136–45. doi:10.1177/2050640614560786
      OpenUrl
    53. ↵
      1. Al-Sunaid FF,
      2. Al-Homidi MM,
      3. Al-Qahtani RM, et al
      . The influence of a gluten-free diet on health-related quality of life in individuals with celiac disease. BMC Gastroenterol 2021;21:330. doi:10.1186/s12876-021-01908-0
    54. ↵
      1. Lee AR,
      2. Ng DL,
      3. Diamond B, et al
      . Living with coeliac disease: survey results from the U.S.A. J Hum Nutr Diet 2012;25:233–8. doi:10.1111/j.1365-277X.2012.01236.x
      OpenUrlCrossRefPubMed
    55. ↵
      1. Zarkadas M,
      2. Cranney A,
      3. Case S, et al
      . The impact of a gluten-free diet on adults with coeliac disease: results of a national survey. J Hum Nutr Diet 2006;19:41–9. doi:10.1111/j.1365-277X.2006.00659.x
      OpenUrlCrossRefPubMedWeb of Science
    56. ↵
      1. Bathrellou E,
      2. Georgopoulou A,
      3. Kontogianni M
      . Perceived barriers to gluten-free diet adherence by people with celiac disease in Greece. Ann Gastroenterol 2023;36:287–92. doi:10.20524/aog.2023.0798
      OpenUrl
    57. ↵
      1. Leffler DA,
      2. Edwards-George J,
      3. Dennis M, et al
      . Factors that influence adherence to a gluten-free diet in adults with celiac disease. Dig Dis Sci 2008;53:1573–81. doi:10.1007/s10620-007-0055-3
      OpenUrlCrossRefPubMedWeb of Science
    58. ↵
      1. Dimidi E,
      2. Kabir B,
      3. Singh J, et al
      . Predictors of adherence to a gluten-free diet in celiac disease: Do knowledge, attitudes, experiences, symptoms, and quality of life play a role? Nutrition 2021;90:S0899-9007(21)00111-8. doi:10.1016/j.nut.2021.111249
    59. ↵
      1. Abu-Janb N,
      2. Jaana M
      . Facilitators and barriers to adherence to gluten-free diet among adults with celiac disease: a systematic review. J Hum Nutr Diet 2020;33:786–810. doi:10.1111/jhn.12754
      OpenUrlCrossRefPubMed
    60. ↵
      1. Sharma P,
      2. Aguilar R,
      3. Abi Nader M, et al
      . Celiac Disease Is More Common in Women but Men Have More Comorbidities and Higher Inhospital Mortality Compared With Women. Am J Gastroenterol 2017;112:S655. doi:10.14309/00000434-201710001-01193
    61. ↵
      1. Glass DC,
      2. Kelsall HL,
      3. Slegers C, et al
      . A telephone survey of factors affecting willingness to participate in health research surveys. BMC Public Health 2015;15:1017. doi:10.1186/s12889-015-2350-9
    62. ↵
      1. Jung NM,
      2. de Bairros FS,
      3. Pattussi MP, et al
      . Gender differences in the prevalence of household food insecurity: a systematic review and meta-analysis. Public Health Nutr 2017;20:902–16. doi:10.1017/S1368980016002925
      OpenUrl

    Supplementary materials

    Footnotes

    • Contributors SMS: conceptualised the study, conducted the interviews, performed the data analyses, drafted the initial manuscript, reviewed and revised the manuscript. LAvdV: conceived and conceptualised the study, supervised data analyses, reviewed and revised the manuscript. JCK-dJ: scientific project leader and guarantor, conceived the study, reviewed and revised the manuscript. All authors approved the final manuscript as submitted.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Patient and public involvement The director and information manager of the Dutch Association for Celiac Disease were involved in participant recruitment and advise regarding the questionnaire and interview content, to ensure that the questions were relevant and understandable.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.