Managing a Gluten-Free Diet Affects All Levels of Society

Small Norwegian study explores the challenges of the gluten-free diet at the individual, interpersonal, community and policy levels.

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Increased globalization of the food systems, individuals with CD might have similar experiences in other high-income countries.

Provisos

• The participants claimed to adhere to a GF diet; however, no dietary assessment was conducted to prove their claims.
• The study was conducted among a small study sample, which is typical of qualitative studies.
• Thus, the findings cannot be generalized.

Participants

• Twelve participants were recruited purposively based on the following inclusion criteria: diagnose of CD > 18 years and no other diet-related disorders.
• Efforts were made to recruit a heterogenic study sample in terms of gender, age, years since diagnosed with CD and residence.
• The majority of the participants (n = 8) were recruited via a Facebook group administered by the Norwegian CD Association.
• These participants were asked to contact the second author to arrange an interview.
• The other four participants were recruited by the second author in her network.
• The participants were recruited continuously through the research process.
• Recruitment was carried out until we observed replication of response and no new themes emerged from the interviews.

Interviews

• Semi-structured interviews were used for data collection. The themes in the interview guide (appendix 1) were developed by the project group and pilot. Minor adjustments were made after the pilot interview.
• The main themes in the final interview guide were perceptions of the management of a GF diet and experiences of purchasing GF products, experiences of preparing and eating purchased GF products and experiences of self-preparing GF food.
• The interviews lasted for 30 to 90 min. The interviewer (K.S.) was assisted by LGH at the first interview who has a lot of experience with qualitative interviews. The interviewers did not have any knowledge of the participants prior to the study.
• The interviewers did not have any personal experiences with CD, but were interested in the topic. The participants could choose to have the interview at their place of work (n = 2), at the home of the interviewer (n = 3), at their home (n = 5) or at a café (n = 2).
• The interviews were conducted between September and November 2019.
• All the participants claimed to strictly eat a GF diet.
• In general, the participants perceived that they had learned how to manage a GF diet; however, the analysis revealed challenges and barriers for adherence to the GF diet at the individual, interpersonal, community and policy levels.

Results

Individual Level

• At the individual level, and in line with a previous study, the participants claimed that it took some time to obtain enough knowledge about CD and to learn how to prepare and find GF food after being diagnosed with CD.
• In a Canadian national survey on the impact of a GF diet, 44% of 2681 people with CD had difficulties following the diet.
• Comparable with our findings, individuals following a GF diet for over 5 years experienced fewer difficulties in a national US survey.
• Knowledge of how to follow a GF diet and developing coping skills can help to reduce the difficulties of adapting to a GF diet.
• Receiving information about a GF diet promptly after a diagnosis of CD is important for initiating good dietary adherence, symptom recovery and improving quality of life.
• The participants in our study who had lived with CD for several years acknowledged the increased and more readily available information about CD in recent years.
• We have not explored their most important sources for information in detail. Canadians with CD perceived the usefulness of the information they obtained about CD ranged from 90.4% (Coeliac Support Association) to 52.1% (dietitian) and to 25.3% (family doctor).
• The participants in our study were concerned about their health, yet they were sometimes uncertain about the healthiness of a GF diet.
• Some participants perceived that they started to eat more healthily following their diagnosis of CD since they could no longer eat fast food and unhealthy food. Others were afraid that the GF products are unhealthy.
• Studies comparing the nutritional quality of GF products with their GC counterparts show that GF products contain more salt, sugar and saturated fats and less fibre and protein compared to their GF counterparts.
• A similar study is currently ongoing in Norway, as there are currently no published data on the nutritional quality of Norwegian GF products. However, given the increased global food marked, these findings are likely transferable to the Norwegian food market.

Interpersonal level

• At the interpersonal level in our study, the feeling of being different and fear of gluten contamination were barriers to eating common meals.
• In a qualitative study among 43 persons with CD in Sweden, the participants experienced shame about their diet in social situations. They even wanted to isolate themselves when they could not eat the same food as other people.
• The participants in our study have developed strategies to eat GF food with people without CD. However, they typically found it more difficult to eat with non-family members. In line with other studies, bringing own food to social gatherings was a common strategy to adhere to a GF diet.

Community level

• At the community level, participants residing in both rural and urban areas wanted a wider selection of tastier GF products to purchase.
• Several international studies have found a low level of satisfaction with the availability and quality of GF products.
• Dissatisfaction with the availability and quality of GF products is associated with lower adherence to a GF diet.
• However, eating GF food has also become popular among those not having CD. Participants considered the GF trend as both an opportunity for the increased availability of more tasty GF products and a threat to the seriousness of the disease.
• King et al. (2019) explored experiences in the growth of the GF industry among 17 persons with CD in Calgary, Canada. The participants in King et al.’s (2019) study experienced the growth of the GF industry as a ‘double-edged sword’.
• As in our study, the participants acknowledged the increase in more palatable GF options, and they were increasingly faced with misunderstandings about the severity of CD as a result of many non-CD individuals subscribing to the GF diet.
• In both studies, the participants were unsure whether those preparing their food had sufficient knowledge of a GF diet. According to a 10-year follow-up study conducted in the UK, the awareness of gluten-related disorders among chefs and the public has increased.
• However, effective communication strategies are necessary to increase knowledge further about CD among those preparing and selling food to prevent gluten-contamination.

Policy level

• Participants asked for political actions to make a GF diet more affordable, although some participants explained that they saved money by preparing food with naturally GF products.
• Even though individuals with CD receive governmental subsidies in Norway, the majority of the participants was concerned about the high price of GF food in food stores, bakeries and restaurants.
• The price of GF products was one of the most important barriers to a GF diet in studies from other countries. In contrast to these studies, some of our participants accepted the higher price because of the higher costs involved in producing GF products for the food industry.
• The participants in our study discussed the labelling system of GF products. Some had difficulties identifying the right products without the GF labelling.
• Similarly, other studies have proposed better labelling of GC ingredients in food products to improve quality of life. Zarkadas et al. (2013) found that about 30% of participants in a national Canadian survey experienced difficulties understanding the labelling of GF products 5 years after a CD diagnosis.
• Participants’ strategies to overcome these difficulties included reading every food ingredient list, labelling all GF flours and having snacks on hand at work or school.

Conclusions

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