A new Canadian study investigated the effect of the recent growth in the gluten-free industry on the social and personal lives of individuals with celiac disease.
Celiac disease is an autoimmune condition in which the immune system sees gluten as a threat. Gluten is a naturally occurring protein found in wheat, rye, and barley. Consumption of gluten by celiac disease patients results in damage to the intestinal wall leading to symptoms such as diarrhea, abdominal pain, bloating, fatigue, skin rash, dementia and iron deficiency among others.
A celiac disease gluten-free diet is currently the only treatment for people living with this condition. Since even a small amount of gluten can provoke an autoimmune reaction in people with celiac disease, the gluten-free diet for them should be free from any amount of gluten, unlike the gluten-free diet for individuals without celiac disease who choose not to eat gluten.
Proliferation of the gluten-free diet industry
An increased awareness of celiac disease and the perceived health benefits associated with a gluten-free diet has led to the proliferation of the gluten-free diet industry. However, this growth in the availability of gluten-free food has affected the lives of people living with celiac disease in different ways.
Several studies have examined how following the celiac disease gluten-free diet affects the lived experiences of patients. For instance, past research shows that people with celiac disease find themselves stigmatized by being the center of attention because of their restricted diet problems.
Common difficulties faced by celiac disease patients
The common problems associated with following a strict celiac disease gluten-free diet may include limited food choices in restaurants, worrying that chefs are not trained to cook gluten-free meals, or feeling frustrated and isolated. In addition, some studies show that patients find themselves being ‘controlled by food’ in social settings. At times, patients continue to eat gluten-containing food as they hesitate to share their condition with friends and relatives.
Psychosocial experience of people living with celiac disease
The stress of being diagnosed with celiac disease in combination with strict adherence to celiac disease gluten-free diet influences the psychosocial experience of patients.
A recent Canadian study published in the Journal of Human Nutrition and Dietetics explored how the changing landscape of the gluten-free diet has affected the experience of celiac disease patients and their relationships and social lives. The researchers recruited 17 adults diagnosed with celiac disease. The participants were interviewed for 45-60 minutes about their life before and after diagnosis of celiac disease.
The researchers recorded and analyzed the interviews to obtain a deeper understanding of the subjective experience of celiac disease and develop themes that characterized the information obtained in the context of relationships and social life. There were three main themes that researchers finally arrived at: fluctuating social climates, altered self-image, and psychosocial perseverance.
Both positive and negative experiences lead to fluctuating social climates
The results showed that a more sophisticated understanding of celiac disease has resulted in less uncomfortable social situations for people following a gluten-free diet. In addition, people exhibit a better understanding of the distinction between the need to follow celiac disease gluten-free diet by patients versus choosing to eat a gluten-free diet for other health benefits.
On the flipside, the researchers found that certain circumstances proved difficult for participants to maintain a satisfying social life because people fail to recognize the seriousness of celiac disease and the complications associated with consuming gluten for the patients.
Following a strict celiac disease gluten-free diet may alter self-image
The participants suggested that popularization of the gluten-free diet as a ‘fad’ diet, sometimes leads to the patients being grouped with those following a gluten-free diet by choice. Furthermore, that leads to patients being characterized as high maintenance and pretentious.
During some situations, participants appear impolite or distrustful if they question regarding the ingredients or preparation of food in social settings. Managing these difficulties makes the patients feel uncomfortable or high maintenance themselves.
Responding to negative social consequences requires psychosocial perseverance
A diagnosis of celiac disease alters the patient’s lifestyle for the rest of his life. Therefore, it requires psychosocial perseverance of patients to alleviate the social burden.
The results of this study showed that patients develop strategies to deal with the effects of celiac disease gluten free diet on their social life and relationships. For instance, researching for the restaurants that have a clear understanding of celiac disease and gluten-free diet was a common coping mechanism adopted by participants. However, many participants preferred home-cooked gluten-free meals and snacks on hand when outside of the home to minimize exposure to gluten.
Education about celiac disease and its relationship to gluten is important
Successful management of celiac disease requires continued education of family, physicians, support groups, caregivers, and the manufacturers of a gluten-free diet. Additionally, an understanding of the quality of life is an important aspect of managing the social ramifications associated with celiac disease. Researchers suggest the use of additional treatment in the form of psychological counseling to help cope with social burdens.
Is the growth of gluten-free food industry a “double-edged sword”?
The participants of this study described the growth of gluten-free food industry and a “double-edged sword” because while this growth has led to more palatable gluten-free options, it has also generated misunderstandings about the seriousness of celiac disease attributable to non-celiac disease followers of a gluten-free diet.
This study highlights some important challenges associated with strict adherence to celiac disease gluten-free diet. However, there are a few limitations of the study that mainly include self-reporting of celiac disease by participants and recruitment of participants through a gluten-free store.
In conclusion, a rapid growth of the gluten-free diet industry has led to several benefits for celiac disease patients but it has also resulted in challenges in the social lives and relationships of individuals with strict adherence to celiac disease gluten-free diet. As people are becoming more aware of celiac disease, it is important for healthcare professionals to understand the impact of this condition on patients’ lives. The authors suggest the inclusion of non-dietary therapies and strategies for better management of the disease.
Written by Preeti Paul, MS Biochemistry
Reference: King, J.A., Kaplan, G.G.& Godley, J. (2018). Experience of coeliac disease in a changing gluten-free landscape. J Hum Nutr Diet. https:/doi.org/10.1111/jhn.12597