Dissertation: Are cognitive distortions the answer for the persistence of depression in treated Celiac disease patients?
Abstract
The research suggests that Celiac patients are heavily influenced by their diagnosis. Anxiety, depression, and social isolation are all common features that sufferers of Celiac disease share. The disease functions in such a way that it forces the sufferer to remove him or herself from the social act of eating: he or she is no longer able to really be a part of the social gatherings that include food (Addolorato, 2001). However, this separation is largely invisible; many people do not realize that Celiac patients face any trouble at all in social situations. In this discussion, an investigation into the social impacts of Celiac disease will be conducted, and an analysis of qualitative results will be completed in an attempt to better understand how and why social isolation occurs, and how it can be treated for Celiac patients. Finally, the research will investigate whether cognitive distortions the answer for the persistence of depression in treated Celiac disease patients.
Introduction
Although Celiac disease is commonly understood to be an autoimmune disorder that affects the small intestine, many people who have Celiac disease experience psychological problems associated with this particular problem. To understand the psychological impacts of Celiac disease, it is important to understand the functionality and symptoms of the problem, in order to better understand the impacts of those symptoms on the day-to-day lives of the people struggling with the disease. Celiac disease can interfere immensely and constantly with one’s day-to-day activities and habits, and it is a disease that is still largely misunderstood by the community at large.
Celiac disease is characterized by an inability to digest gluten in the small intestine (Addolorato, 2001). When individuals with Celiac disease ingest gluten, their bodies have an immune response to the gluten in their food; the individual with Celiac disease will experience attacks from their immune system on the villi of the small intestine (Addolorato, 2001). When an individual with Celiac disease is undiagnosed—and still eating a diet rich in gluten, which is found in many common food—many symptoms can occur, including malabsorption of all food in the small intestine, abdominal bloating or pain, cramps, fatigue, weight loss due to inability to absorb food, chronic diarrhea, constipation, and irritability (Ciacci et al., 2002).
However, most of these negative consequences of Celiac disease are alleviated once an individual with Celiac removes gluten proteins from his or her diet; the psychological impacts of the disease, on the other hand, go on for much longer than the physical symptoms. Because there is no cure for Celiac disease, the individual with this genetic condition has a chronic condition that requires life-long adherence to a strict diet: this can be very difficult for some, and requires a robust support system (Addolorato et al., 2004; Addolorato, 2001).
Because Celiac disease is a chronic condition, those with the condition can face a number of significant problems that severely impact their mental state and their ability to cope with the diagnosis (Farrell et al., 2004). The symptoms of Celiac disease cause long-term discomfort and dysfunction, but awareness of the disease—until very recently—was quite minimal, and many individuals went without appropriate diagnosis for a significant period of time (Bacigalupe & Plocha, 2015).
The combination of societal misunderstanding of Celiac disease with the pressure put on the individual with Celiac to adjust his or her lifestyle forever causes significant negative mental impact on the individual with Celiac disease. Individuals with this disease are more likely to suffer social and psychological consequences as a result of their experiences with the disease, and the chronic nature of the condition means that individuals with Celiac disease never have any respite from the condition: there is always the potential for further complication if the sufferer fails to adhere to his or her dietary plan.
Anxiety, depression, and social isolation are all common features that sufferers of Celiac disease share. The disease functions in such a way that it forces the sufferer to remove him or herself from the social act of eating: he or she is no longer able to really be a part of the social gatherings that include food (Addolorato, 2001). However, this separation is largely invisible; in this discussion, an investigation into the social impacts of Celiac disease will be conducted, and an analysis of qualitative results will be completed in an attempt to better understand how and why social isolation occurs, and how it can be treated for Celiac patients. Finally, the research will investigate whether cognitive distortions the answer for the persistence of depression in treated Celiac disease patients.
Literature Review
Celiac disease is a relatively common genetic disorder, but until recently, many people struggled with the disease before finding a physician who could make a diagnosis (Addolorato et al., 2004). Although Celiac disease is commonly associated with gastrointestinal problems, there are also significant psychological problems that have recently become associated with the diagnosis of Celiac disease in patients (Addolorato, 2001; Addolorato et al., 2004; Rubio-Tapia et al., 2012). One of the most common problems that individuals with Celiac disease face is the problem of anxiety (Addolorato, 2001). Addolorato (2001) notes that there is a distinct reduction in the perception of quality of life when dietary restrictions are imposed on the individual; this perception often translates into anxiety.
However, perception is not the only thing playing a significant role in anxiety and depression for individuals with Celiac disease. Individuals with Celiac disease experience malabsorption of nutrients in the small intestine, and as a result, Addolorato (2001) notes that there is a reduction in brain metabolism that is associated with the development of anxiety and depression—this reduction in brain metabolism is seen in sufferers of anorexia nervosa as well, because it is associated with malnutrition as well as malabsorption (Addolorato, 2001; Farrell et al., 2004).
There is no treatment for Celiac disease other than the complete removal of gluten from the diet of the sufferer. Unfortunately, the social implications of removing one of the most common wheat proteins from the diet can be immense, particularly for children, who have little comprehension of how or why their bodies are becoming ill (Farrell et al., 2004; Ciacci et al., 2002). Indeed, children do not have the anatomical knowledge to truly understand the harm that could be done to their mucosa if they fail to adhere to the diet set by their doctor; all these children know is that they are different from their peers, and this necessary exclusion can lead to anxiety and depression in children with Celiac disease (Farrell et al., 2004; Ciacci et al., 2002).
Thalheimer (2015) suggests that most individuals “cheat” on their gluten free diets, even as fully aware adults, knowing the potential downsides to “cheating:” there are struggles with social adherence to the gluten-free diet even for people who have been practicing a gluten-free diet since childhood. Thalheimer (2015) writes, “In a 2012 study by Anne Lee, EdD, RDN, LD, and colleagues, 98% of celiac patients surveyed initially said they comply with necessary dietary restrictions, but when asked more specific questions the vast majority admitted to times when they knowingly ate gluten” (Thalheimer, 2015). The researchers went on to note that 81% of men and 88% of women admitted to cheating on their gluten-free diet at weddings, birthdays, and during other social settings. The researchers also suggest that there is a problem with the diet: people tend to misunderstand or minimize the importance of the diet, and they tend to see their gluten free lifestyle as an option rather than as a necessity. Without adherence, many people will cause almost irreparable harm to their bowels; it also puts them at a higher risk for cancer and other diseases (Thalheimer, 2015). This does not seem to stop many people from cheating on their gluten free diets, however—perhaps the lack of appropriate education about the severity of the problem is the issue. This lack of adherence indicates a deeper problem than just adherence to a diet: individuals with Celiac disease struggle to balance adherence to their necessary diet against their need for companionship and friendship (Rosén et al., 2011). When asked to choose between living a normal life and adhering to the diet, many seem willing to cheat to avoid becoming lonely or depressed (Thalheimer, 2015).
The patients’ perspectives on the disease have become of significant interest to researchers in recent years. Physicians who work with Celiac patients are more aware than ever before about the potential psychological struggles that their patients might face, but this does not necessarily reflect a new strategy for dealing with individuals who are suffering from Celiac disease related psychological issues (Rubio-Tapia et al., 2012). Rubio-Tapia et al. (2012) write. “Factor analysis shows that the most relevant psychological dimension of CD patients at the moment of diagnosis is characterized by a pattern of feelings of fear, anger, anxiety, and sadness. Of these, anger may be considered the most worrying, because of its tendency to worsen the patient-clinician relationship and to reduce compliance” (Rubio-Tapia et al., 2012). While it is understandable that individuals with Celiac disease might feel fear upon diagnosis, those with the disease must be willing to comply to have an overall positive long-term prognosis.
There is currently little information available regarding the mechanism for depression in individuals with Celiac disease. Greene and Blanchard (1994) note that in individuals with irritable bowel syndrome (IBS), intensive cognitive behavior therapy led to improvement of symptoms due to the improvement of patients’ mental state. The researchers determined that there is indeed a cognitive mechanism to healing and to success, and postulate that this “cognitive” benefit derives from a sense of control and understanding of the issues and changes that the individual experiences with this particular disease.
Addolorato et al. (2004) note that when Celiac disease patients are encouraged to participate in psychological support counseling, patients experience a much more significant positive increase in mental health metrics than if these patients do not participate in mental health counseling. This seems to indicate that while there may be an organic facet to the disease—indeed, psychological symptoms of depression, anxiety, and irritability can indeed be associated with Celiac disease—it is also a function of the social isolation that many Celiac sufferers feel (Rubio-Tapia et al., 2012; Addolorato et al., 2004).
Asking individuals to adhere to a gluten-free diet is not as simple as asking them to take a pill each day; adherence to their diet is the only treatment for Celiac sufferers, and this treatment can lead to separation from one’s social circle and, essentially, social isolation (Rubio-Tapia et al., 2012; Addolorato et al., 2004). However, Addolorato et al. (2004) note that the prognosis for mental heath is better for individuals who have support systems and support structures built into their treatment plan (Rubio-Tapia et al., 2012; Addolorato et al., 2004).
Research Hypothesis
The research suggests that Celiac patients are heavily influenced by their diagnosis. The researchers postulate:
The health belief model can appropriately model and predict likely actions for sufferers of Celiac disease.
Celiac patients with strong support systems and exposure to psychological support will score better in terms of mental and psychological health than their peers without support.
Cognitive distortions are the primary mechanism causing and influencing the persistence of depression in patients after one year.
Cognitive behavior therapy is an effective and efficient treatment for the problems of depression, anxiety, and fear associated with Celiac disease.
Research Design and Methodology
This particular discussion will focus on qualitative results rather than quantitative results. Rather than investigating measurable quantities—like serotonin levels in the brain, for instance—the research done on this particular group will focus on reported results by patients who are experiencing struggles with Celiac disease.
Participants in the study will be recruited from a support group. These participants will have been following a gluten-free diet for their Celiac disease for no less than one year, but for no more than three years; this will give the researchers a group of approximately twenty participants that have all had a relatively similar time frame of experience with their disease. The research will focus on adults, all over the age of eighteen; similar studies might be conducted with children and with adults who have had a diagnosis for longer. The researchers will ask the participants to complete a questionnaire with 48 questions, including questions involving SAIC, knowledge, obstacles to mental health and normal functioning, and perceptions of the diseases as a whole. These results will then be collated and the health belief model will be used to determine how effective cognitive behavior therapy might be for patients who are suffering from the problems associated with Celiac disease and social isolation as a whole. The purpose of the research design will be to determine the mechanism of depression for the individuals who have been diagnosed with Celiac disease for one year. The questionnaires will be used to gauge the level and type of cognitive distortion that the patients experience in the hopes of isolating the mechanism of depression.
Discussion
The research suggests that the health belief model might be appropriate to understand the implications of Celiac disease, and how sufferers approach their diagnosis. The health belief model suggests that an individual will take health-related precautions and actions if they believe that a negative health condition can be avoided; for instance, an individual who understands his or her Celiac disease will adhere to the gluten free diet because he or she understands that the negative health consequences of Celiac disease can be avoided. The health belief model also postulates that the individual must believe that he or she is capable of following the gluten-free diet to even attempt to do so; this is why it is so fundamentally important for individuals with Celiac disease to be appropriately coached and educated by clinicians.
Cognitive distortions are sometimes the mind’s way of coping with a stressful situation: the mind is able to convince an individual of something that is not really true because the cognitive distortion is easier to absorb and comprehend than the truth, which is difficult. By understanding the mechanism of cognitive distortion in a small group of Celiac patients, some insight might be gleaned into the overall mechanism of depression specifically for individuals suffering from this chronic disease.
Depression and anxiety have a way of sapping patients of their strength and of their belief in themselves. To fall victim to depression and anxiety can cause major problems for individuals suffering from chronic conditions. Instead, clinicians must take a pre-emptive view of depression and anxiety, treating the underlying issues by offering supportive systems before these conditions become particularly problematic for the sufferer.
Food is social in almost all human societies. Without the ability to connect through food, many people feel lost: they feel as though their ability to build bonds with other people has been cut off in some way, and they are right to feel this way. Human beings place a lot of emotional importance on sharing meals and being together around meals. Learning how to deal with the new and different role of food in one’s life is important for individuals who are suffering from Celiac disease, and psychological assistance is often necessary for sufferers.
Implications
People who have Celiac disease face significant challenges once they have a diagnosis, and those challenges tend to become psychologically heavy over time. As the gravity and strictness of the diet they must follow becomes clear, many people with Celiac disease find that they fall into a state of depression because of the nature of their diagnosis. Celiac disease, like many food-related disorders and diseases, causes serious disruption in a sufferer’s social scene; much of the community and friendship that is built between people is built around food. Thanksgiving, Christmas, and even birthdays become a struggle for the individual suffering from Celiac disease: the food is present, but the sufferer cannot partake in the festivities.
There are also analogues that might be considered for other diseases, as well: although irritable bowel syndrome (IBS) is a completely different disease than Celiac disease, the psychological impacts of this disease might respond to similar treatment as Celiac disease because of the similar manner in which these two diseases present. Restrictions in diet can easily lead to a feeling of isolation within one’s community, and discovering an effective way to treat this social isolation and the feeling of being burdensome on one’s closest friends can be applicable to individuals with numerous diseases and struggles.
There is hope for those struggling with Celiac disease, however; the rising trend of gluten-free food, along with increased awareness of the psychological implications of the disease offers new opportunities to clinicians and patients alike. With studies like this one, the hope is to bring new life and new opportunities for treatment to individuals suffering from Celiac disease. Lessening social isolation as a result of the disease is one of the primary concerns for caregivers, as long-term anxiety and stress can cause lasting damage as easily as failure to adhere to the appropriate diet. With new studies presenting new insight into the struggles that those with the disease face, the hope for clinicians is to develop new treatment strategies and techniques to better address the problems that are unique to Celiac patients.
All of the research done on Celiac disease and IBS has suggested that there might be different factors contributing to the cognitive distortions that the patients experience. However, there has been little research done into the actual mechanism of this trend of cognitive distortion, particularly in people with Celiac disease. The goal of the research is to develop new insights into these mechanisms and determine new best practices for patients with Celiac disease.
References
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Addolorato, G., De Lorenzi, G., Abenavoli, L., Leggio, L., Capristo, E., & Gasbarrini, G. (2004). Psychological support counselling improves gluten‐free diet compliance in coeliac patients with affective disorders. Alimentary pharmacology & therapeutics, 20(7), 777-782.
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Farrell, S. P., Hains, A. A., Davies, W. H., Smith, P., & Parton, E. (2004). The impact of cognitive distortions, stress, and adherence on metabolic control in youths with type 1 diabetes. Journal of Adolescent Health, 34(6), 461-467.
Greene, B., & Blanchard, E. B. (1994). Cognitive therapy for irritable bowel syndrome. Journal of consulting and clinical psychology, 62(3), 576.
Rosén, A., Ivarsson, A., Nordyke, K., Karlsson, E., Carlsson, A., Danielsson, L., & Emmelin, M. (2011). Balancing health benefits and social sacrifices: a qualitative study of how screening-detected celiac disease impacts adolescents' quality of life. BMC pediatrics, 11(1), 1.
Rubio-Tapia, A., Ludvigsson, J. F., Brantner, T. L., Murray, J. A., & Everhart, J. E. (2012). The prevalence of celiac disease in the United States.The American journal of gastroenterology,107(10), 1538-1544.
Thalheimer, J.C. (2015). Gluten-Free Living and Emotional Health: What Every Dietitian Must Know. Dietitian, 17 (12), 36-50.
