<<

Cognitive Appraisal and

in Patients with Coeliac Disease

Thesis

by

Michaela Konigova

Submitted in Partial Fulfillment of the Requirements for the Degree of

Bachelor of Arts

in

Psychology

State University of New York

Empire State College

2016

Reader: Ronnie Mather, Ph.D.

Acknowledgements

I would like to thank my mentor Ronnie Mather, Ph.D. for his guidance and continuous support and help during my research. Also, I would like to thank Mrs. Jitka Dlabalova, director of Spolecnost pro bezlepkovou dietu (Association for gluten-free diet), for her guidance, consultation, as well as support with participants’ outreach.

Furthermore, I would like to thank my family, especially to my life partner Milan, who always supported me in my studies, and our beloved son David. Special thanks belong to my parents, Zdenek and Libuse, who were there for me whenever I need them most, and without their help and babysitting, I would not be able to complete it.

Table of Contents

1 Introduction 6

2 Literature Review 9 2.1 Coeliac Disease 9 2.1.1 Impacts of the Coeliac Disease on Psychological Problems 11 2.1.2 Biological Explanations for Psychological Disturbances in Patients with Coeliac Disease 12 2.2 Cognitive Appraisal 14 2.2.1 Types of Cognitive Appraisal 15 2.2.2 Measures of Cognitive Appraisal 16 2.2.3 The Cognitive Appraisal of Health Scale 17 2.3 Depression 18 2.3.1 Types of Depression 19 2.3.2 Factors of Depression 21 2.3.3 Measures of Depression 22 2.3.4 The Beck Depression Inventory II 23 2.4 Cognitive Appraisals and Depression 24 2.4.1 Cognitive Appraisals and Depression in Patients with Coeliac Disease 24 2.5 Model Used in the Current Research 26 2.6 Hypotheses 27 2.7 Theoretical Assumptions 28

3. Method 29 3.1 Introduction 29 3.2 Research Design 29 3.3 Participants 30 3.4 Ethics 30 3.5 Measures 31 3.6 Procedure 32 3.7 Analysis 32

4. Findings 34 4.1. Introduction 34 4.2. Results of the Application of the Method 34 4.3. Descriptive Statistics of Main Variables 34 4.3.1. Overall Descriptive Statistics of Main Variables 34 4.3.2. Descriptive Statistics of Depression Scores by Gender 37 4.3.3. Descriptive Statistics of Depression Scores by Diagnosis 39 4.4. Test of Hypotheses 41

5. Discussion 44 5.1. Discussion of Descriptive Statistics 44 5.2. Discussion of Test of Hypotheses 48

6. Conclusions 50 6.1. Main Conclusions 50 6.2. Implications 51 6.3. Limitations 51 6.4. Suggestions for Future Research 52

Work Cited 53 Appendix 58

Abstract

Higher prevalence of depressive disorders among patients with coeliac disease compared to the general population is attracting scientists to study this phenomenon.

Based on the current state of research, combination of biological and cognitive reasons is at the center of the presumed association. The research was designed to analyze the impact of cognitive appraisal on depression. To examine if gender, diagnosis of coeliac disease, and the cognitive appraisal predicts clinical depression multiple regression analysis was carried out. The participants were selected based on the random sampling principle. They were advised to participate in the research with the help of the

Association for Gluten-Free Diet in the Czech Republic. The total sample size was 215 participants, out of which 141 confirmed the diagnosis of coeliac disease and 74 not.

The participants completed two standardized tests: Cognitive Appraisal of Health Scale and Beck Depression Inventory – II. The independent variables, i.e. gender, diagnosis of coeliac disease and cognitive appraisal statistically significantly predicted depression, F (6, 130) = 5.885, p < 0.0005, adj. R2 = 0.177, p < 0.05. This possible association between gender, diagnosis of coeliac disease, cognitive appraisal and depression should be taken into consideration by psychotherapists and counsellors, particularly if the depressed patients do not respond well to psychological treatment or psychopharmacological therapy. Also, the psychotherapists and counsellors should be aware that threat type of cognitive appraisal related to the coeliac disease and gluten- free diet might elevate the clinical symptoms of depression. Further research on this topic should bring more clarity on this interesting association.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 6

Introduction

From time to time, everyone feels a little bit blue, lazy, or let’s call it depressed. But when this particular state of mind persists or occur more often, people start to think about it, and they might consider seeking a professional help. Quite often, those who have been looking for the professional help of psychologist because of feeling depressed are not responding well to the treatment. When the professional tries to find out the reasons behind it, they detect intestinal problems leading their patients to seek the help of gastroenterologists and the diagnoses of a coeliac disease.

Coeliac disease is a gastrointestinal disorder with many diverse symptoms. The typical disease’s features are represented by gastrointestinal problems, anemia, vitamins deficiencies and chronic fatigue but in some people the coeliac disease masks itself by completely different symptoms, if any. Along with these medical problems there is an increased rate of depression in patients with coeliac disease compared to the general population. According to several studies, the symptoms of depression in patients with coeliac disease is almost twice as higher than in general population (Ludvigsson,

Reutfors, Osby, Ekbom, & Montgomery, 2007)& (Arigo, Anskis, & Smyth, 2012)&

(Ciacci, Iavarone, Mazzacca, & De Rosa, 1998), which suggests that there might be a feasible explanation why depressive symptoms co-occur with the coeliac disease.

Researchers focus on three main biological possibilities why coeliac disease might trigger or mask psychological problems, i.e. malabsorption of nutrients essential for normal functioning of the brain; immunological reaction and release of antibodies affecting the hypothalamus-pituitary-adrenal axis; and extra-intestinal inflammation of the body (Beaudoin & Zimbardo, 2012). But even after recognition of the coeliac

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 7 disease and initiating the gluten-free diet, which by now represents the only effective treatment for coeliac disease, these symptoms of depression do not simply vanish

(Hauser, Janke, Klump, Gregor, & Hinz, 2010). And it is precisely the time when people’s cognitive evaluation affects their feelings and behavior. The gluten-free diet could, in some people, lead to the reduction in quality of life. The adherence to gluten- free diet can be frustrating and isolating as the meal plays an important role in social life and these restrictions could lead to disruption of social relationships and individual’s well-being for many reasons. For example, one cause might be represented by concerns about cross-contamination that intensify the fear, another one could be loss of favorite foods that lead to grief and/or anger ant there is also an impact of constant worries that adhering to the gluten-free diet would result in labeling them sick in the eyes of friends, family, partner and/or colleagues. If these cognitions continue they start to interfere with daily life and could cause further disruptions to an individual’s well- being and could even worsen the depressive states of these individuals. Studies suggest that patients with coeliac disease may need psychological support in order to correct psychological alterations and to improve the acceptance of gluten-free diet

(Addolorato, et al., 2004) & (Hauser, Janke, Klump, Gregor, & Hinz, 2010).

Also, the new trend of popularity of gluten-free diet causes another problem to patients with coeliac disease. Mass-media are misinterpreting the benefits of gluten-free diet and gluten-free diet is becoming popular diet life-style option among general population. This trend affects significantly the food industry profits with the gluten-free segment becoming a multi-billion dollars’ industry (Gaesser & Angadi, 2012) rising annually by 26% in Europe and the United States of America. The producers are

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 8 developing newer and tastier eating options putting those who really need to adhere to the diet at risk. Firstly, not only are those options chemically and otherwise processed, but they also contain more sugars, salt and additives which might have negative effects on health. Secondly and more importantly, the coeliac disease, being the mainstream option, is not taken seriously in restaurants, cafeterias and other facilities anymore. It is not rare for a coeliac asking for a gluten-free option at the restaurant to be served a pasta cooked in a boiled water full of gluten and after returning home experiencing subsequent health problems, which in turn influence coeliacs’ cognitive appraisal system.

The goal of this research is to examine the impact of cognitive appraisal, the diagnosis of coeliac disease and necessity to adhere to the diet measures on the increased level of depression among patients with coeliac disease. We believe that our research findings will be useful due to following reasons. The first one is that there are tons of research on biological reasons of depression in patients with coeliac disease but there is lack of research on cognitive appraisal of the coeliac disease’ diagnosis and depression and we need to address this topic. The second one is that this might help to understand the impact of cognitive evaluation on the psyche of the individuals living with a coeliac disease which in turn leads to higher awareness of this problem of both, the professionals (i.e. medical doctors, psychologists, and counselors) and the individuals living with coeliac disease. This in turn might help to overcome the obstacles of living with this type of chronic illness and lead to an increase of the quality of life.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 9

Literature Review

2.1 Coeliac Disease

The coeliac disease is an autoimmune type of gastrointestinal disorder often referred to as a Chameleon Disease, because it can be manifested by different kinds of symptoms.

The name is derived from the Greek koiliakos, meaning belly (Woodward, 2010). The coeliac disease is precipitated in genetically predisposed persons by the digestion of gluten, the major storage protein of wheat and other grains such as barley, rye and oats

(Ciclitira, Johnson, Dewar, & Ellis, 2005). In those sensitive to gluten, the ingestion of gluten leads to the development of autoimmune inflammation of the lining of the small intestine, which leads to the destruction of the villi in the intestine (Ciclitira, Johnson,

Dewar, & Ellis, 2005) and an inflammatory response (Beaudoin & Zimbardo, 2012).

Consequently, the surface of the intestine decreases, and thus reduces the ability of digestion and nutrient absorption (Woodward, 2010). In some individuals, even the disruption of metabolism is the result.

The diagnosis is based on a blood test which results show present antigliadin antibodies

(IgA and IgG) and then it is confirmed via small-bowel biopsy (Ciclitira, Johnson,

Dewar, & Ellis, 2005). As it was already mentioned, the coeliac disease is a genetically predisposed condition. The prevalence rate from twin-studies reaches 70% up to 100% in case of monozygotic twins and 40% up to 60% in case of dizygotic twins (Ciclitira,

Johnson, Dewar, & Ellis, 2005). The main contributing genetic risk factor is the presence of the two genes, HLA DQ2 and HLA-DQ8. For the development of coeliac disease, it is then necessary to be born with these genes, and the consumption of gluten.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 10

The prevalence of coeliac disease reaches 5% of the population, but it is estimated that this number should be even higher (Ciclitira, Johnson, Dewar, & Ellis, 2005).

Historically, coeliac disease was thought to be rare, with prevalence rate of about

0.02%. The recent increase is due to the changes in diagnostic practice through targeted screenings. Also, there are variations in prevalence rates among cultures, which tends to be explained via genetic predispositions, dietary habits, and the consumption of wheat (Beaudoin & Zimbardo, 2012).

There are four basic forms of coeliac disease, which explains why in most affected people, coeliac disease remains undiagnosed. The first and actually the only one typical is referred to as the True normal form of coeliac disease and its predominant features are represented by gastrointestinal symptoms which include steatorea, diarrea, pain and discomfort in digestive tract, chronic constipation, weight loss, failure to thrive, anemia, fatigue and vitamins deficiencies (Ciclitira, Johnson, Dewar, & Ellis, 2005).

The second form is called Latent coeliac disease and the symptoms are not related to the gastrointestinal problems, but usually have the form of anemia and osteoporosis

(Ciclitira, Johnson, Dewar, & Ellis, 2005). The third form is called Silent coeliac disease, when the patient usually has no physical symptoms, but the biopsy of the small intestine confirms the diagnoses. The last form is called the Undiagnosed form, when the patient does not have any symptoms, the antibodies are present but the biopsy of small intestine does not find any significant changes (Ciclitira, Johnson, Dewar, &

Ellis, 2005).

The only effective treatment for the disease is adhering to a lifelong gluten-free diet.

Currently, no medication exists that would prevent damage or prevent body from

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 11 attacking the small intestine cells when the patient consumes food with gluten. Strict adherence to the diet allows the intestinal to heal, however, the response to this therapy is not satisfactory, and in approximately 20% of patients the symptoms prevail even after being diagnosed, mainly because of non-adherence to gluten-free diet (Ciclitira,

Johnson, Dewar, & Ellis, 2005).

2.1.1 Impacts of the Coeliac Disease on Psychological Problems

Along with the gastrointestinal, nutritional, and metabolic consequences of coeliac disease, there are increased rates of abnormal psychological symptoms and mental disorders in patients with coeliac disease. The research of psychological problems of coeliac disease shows that the disease can manifest itself through problems in cognitions, affect, behavior and social interaction. Psychological symptoms include depressive states, anxieties, affective flattening, avolition, autistic behavior, auditory hallucinations, telepathic thought, and catastrophic expectations (Hauser, Janke,

Klump, Gregor, & Hinz, 2010).

Regarding the problems in the cognitive area, memory lapses, attention difficulties and headaches are common conditions in up to 50% of people with celiac disease (Hu,

Murray, Greenaway, Parisi, & Josephs, 2006).

In the behavioral area, chronic fatigue as well as eating and weight issues are very common among patients with coeliac disease (Empson, 1998). Also, social phobias and avoidance of social situations are quite common in people with coeliac disease

(Addolorato, et al., 2008). Living with a chronic disease may lead to feelings of grief, sorrow, fear, anger, and irritability (Addolorato, et al., 2004). As already mentioned,

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 12 the gluten-free diet can be frustrating and isolating as the meal plays an important role in social life and in some coeliac patients, the gluten-free diet restrictions can lead to the difficulties in daily social relationships for many reasons.

2.1.2 Biological Explanations for Psychological Disturbances in Patients with

Coeliac Disease

The researchers agree on three main possibilities why coeliac disease might trigger or mask psychological problems (Beaudoin & Zimbardo, 2012). The first one is the malabsorption of nutrients essential for normal functioning of the brain (Beaudoin &

Zimbardo, 2012). Researchers first observed the connection between coeliac disease and depression in the 1980’s and concluded that the depressive symptoms were the result of untreated coeliac disease, possible because of malabsorption and malnutrition which reduce the brain monoamine metabolism (Halert & Astrom, 1982).

Malabsorption and deficiency of folic acids and vitamins, mainly vitamins B, play a significant role in the production of certain neurotransmitters that are important in regulation of mood and other brain functions and implicate reduction of synthesis of neurotransmitters in the central nervous system. Folic acid deficiency is implicated in both coeliac disease and depression. The study noted that red cell folic acid levels are significantly lower in people with depression but not in those with bipolar disorder which explains why coeliac disease is associated with depression but not with bipolar disorder that includes the manic stage (Ludvigsson, Reutfors, Osby, Ekbom, &

Montgomery, 2007). Malabsorption related deficiencies of tryptophan could also contribute to the states of depression (Ludvigsson, Reutfors, Osby, Ekbom, &

Montgomery, 2007) as tryptophan is necessary for the body’s production of serotonin,

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 13 which is the central neurotransmitter involved in the regulation of mood and anxiety.

Studies made by Ludvigsonns and Hallerts teams reported significant increase in major serotonin and dopamine metabolite concentrations in the brain after one year on a gluten-free diet and taking vitamin B supplements, which then directly results in improvements in anxiety states, and behavioral symptoms. What must be stressed is that the side effects of malabsorption present in coeliac disease patients can cause symptoms that can be falsely mistaken for depression. For example, a deficiency of folic acid due to malabsorption can cause fatigue, apathy and forgetfulness. Iron deficiency, with or without anemia, can produce feelings of tiredness and easy fatigue, symptoms that are associated with depression (Siniscalchi, et al., 2005). The second option stresses the role of autoimmune reaction consequently leading to the active bowel inflammation (Ludvigsson, Reutfors, Osby, Ekbom, & Montgomery, 2007). The immunological reaction in coeliac patients leads the body to attack their own healthy cells in the small intestine as well as in other gastrointestinal organs that leads to the production of antigliadins (Beaudoin & Zimbardo, 2012). These antibodies are directly involved in the neuropathological process, or are markers of autoimmune activity with an unidentified neurotoxic antibody. For example, one research suggests that these antibodies affect the Purkinje cells in the cerebellum and the thyroid gland, which then triggers the overproduction of hypothalamus-pituitary-adrenal axis, which was referred to in section about depression (Beaudoin & Zimbardo, 2012). The third most often explanation by researchers links the untreated coeliac disease to extra-intestinal inflammation in the body, which influence the proper functioning in both the peripheral and the central nervous system (Beaudoin & Zimbardo, 2012). Studies showed that

73% patients with untreated coeliac disease have cerebral blood flow abnormalities like

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 14 those among patients with depressive disorders (Ciacci, Iavarone, Mazzacca, & De

Rosa, 1998), and brain atrophy (Beaudoin & Zimbardo, 2012).

Besides these three biological explanations, there is also probability that depression in patients with coeliac disease is due to cognitive factors, more precisely cognitive appraisal, which will be explained further in the thesis.

2.2 Cognitive Appraisal

Cognition is the mental process of acquiring knowledge and understanding through thought, experience, and senses (Ahmad, 2005). Cognitive processes of thinking and reasoning are used to form any type of cognitive appraisal (Kessler T. A., 1998).

Cognitive appraisals are normal processes by which an individual assesses any stressful event in their lives and decides if the event is going to affect them and how (Ahmad,

2005). This process is activated especially when it relates to the well-being of an individual. Together with this appraisal response, emotional and physiological responses are formed. Lazarus and Folkman in their original research of the

Transactional Model of Stress and proposed that the cognitive appraisal of the situation may influence the outcome more than the actual stressful event itself (Lazarus

& Folkman, 1984). Therefore, how the individual appraises the situation, not the situation itself, determines the amount of stress and individual perceives. So, the cognitive appraisal system of each individual, that is based on the underlying cognitive processes of self, influences the individual’s abilities to cope with stress and life crises.

According to the Lazarus and Folkman Transactional Model of Stress and Coping,

“stress is a relationship between the individual and the environment appraised to the

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 15 well-being and compared to the personal resources (Lazarus & Folkman, 1984). When the individual faces any stressful situation, mediating processes; i.e. cognitive appraisal and coping; are activated and these mediating processes impact the perceived stress on a long term as well as short term basis.

Peter Savoley and Deborah Birnbaum (1989) studied the influence of mood on health- relevant cognitions and found out that mood has a significant impact on the appraisal of certain physical symptoms and on health behavior self-efficacy.

2.2.1 Types of Cognitive Appraisal

The cognitive appraisal is a process by which any stressful event is evaluated for meaning and significance to the individual’s well-being (Lazarus & Folkman, 1984).

The cognitive appraisal is two-dimension process that consists of primary and secondary appraisals (Kessler T. A., 1998). The two dimensions of appraisal are independent, equally important, and occur at the same time. An individual might appraise the situation in more than one type of appraisal at the same time (Lazarus &

Folkman, 1984).

Primary appraisal is the evaluation of how the event will affect an individual in regards to the meaning and significance to the well-being (Kessler T. A., 1998). This dimension of appraisal has three forms, i.e. irrelevant, benign-positive and stressful.

The irrelevant form of appraisal has no direct implications to the well-being. The benign-positive appraisal results in positive implications for well-being of an individual. The stressful form of appraisal has additionally three types of the appraisal, i.e. harm or loss, threat, and challenge. The harm or loss form of stressful appraisal

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 16 refers to the damage that was already experienced or perceived by the individual. The threat form of stressful appraisal is referring to the harm or loss that has not been experienced yet but an individual is expecting to occur. And lastly the challenge form of stressful appraisal refers to the situation when the appraisal of stress leads to a personal growth, or provides the opportunity for gain (Ahmad, 2005).

The secondary dimension of appraisal refers to the evaluation of coping options and available resources that the individual has when faced with a stressful situation (Kessler

T. , 1998). It refers more to the physical, social, psychological, and material assets of an individual as well as the locus of control of the individual. This dimension is very important, as the final appraisal of the situation depends on what can be done about the situation and depends on what is at stake (Kessler T. A., 1998). Theresa Kessler in construction of her measurement defined four stages for the secondary appraisal. She proposed that the individual i) decides what can be done, ii) thinks of coping options, iii) decides which coping option to choose and lastly iv) formulates ideas about how the options may affect the situation (Kessler T. A., 1998).

2.2.2 Measures of Cognitive Appraisal

There are numerous ways how to measure cognitive appraisal. The primary appraisal can be measured by a single-item scale such as degree of threat or stress, or by single dimensions representing the significance of an illness, or by items representing the configuration of stressful encounter (Ahmad, 2005). Only a few researchers measured together with the primary appraisal the secondary appraisals, and they usually measured it as perceived control over events. The scales that would measure both dimensions of cognitive appraisal, i.e. primary and secondary appraisal are: the

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 17

Cognitive Appraisal of Health Scale (CAHS), the Meaning of Illness Questionnaire

(MIQ), the Appraisal of Illness Scale (AIS) or the Stress Appraisal Measure (SAM)

(Peacock, 1990) and the Primary Appraisal/Secondary Appraisal scale (Carpenter,

2016).

2.2.3 The Cognitive Appraisal of Health Scale (CAHS)

The Cognitive Appraisal of Health Scale (CAHS) was developed by Valparaiso

University Professor Theresa A. Kessler in 1998. The instrument was designed based on the Lazarus and Folkman’ theory of Transactional Model of Stress and Coping, which says that an individual could appraise a potentially stressful event in multiple ways and follows the principles of previously used psychometric tools for measurements of cognitive appraisals. This self-report questionnaire is referred to be able to measure both, the primary and the secondary appraisals associated with health- related events but the main emphasis was put on the primary appraisal dimension

(Kessler T. A., 1998). In the instructions, the participants are asked to fill in the questionnaire related to their health status. Four out of five items in the CAHS, i.e. the coping options associated with cognitive appraisal of threat, challenge, harm/loss, were developed by Folkman in his theory of cognitive appraisal. The fourth item benign/irrelevant cognitive appraisal was added by Kessler, as she thought that the tool should be able to measure all the relevant types of cognitive appraisal (Kessler T. A.,

1998).

The instrument was validated on a convenience sample of 201 women at 0-3-21 years after being diagnosed with breast cancer (Kessler T. A., 1998). The construct validity was assessed through a principle component analysis that produced a four-factor model

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 18 representing the primary appraisal dimension consistent with theoretical predictions

(Kessler T. A., 1998). The concurrent validity was assessed through correlations between the variable of time since the diagnosis of breast cancer and the primary and secondary appraisal scales. The correlations between primary and secondary appraisals are consistent with theoretical predictions (p < 0.0) (Kessler T. A., 1998). Internal consistency estimates of the primary appraisal scales (i.e. four subscales) was assessed using standardized alpha and theta coefficients and were greater than 0.72, and each supported the internal consistency for initial scale development (Kessler T. A., 1998).

We have found nine additional studies that used the CAHS, though some of the studies used the instrument in modified and simplified version, ranging from full to thirteen items only (Carpenter, 2016).

The revised version of CAHS contains 28 items measuring the primary appraisal dimensions of threat (5 items), challenge (6 items), harm/loss (8 items), benign/irrelevant (4 items), and 4 items measuring the secondary appraisal dimensions of coping options and resources (Kessler T. , 1998). Respondents are asked to respond to each item based on their appraisal of their current health status. All items are scored on a 5-point Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree).

Higher scores on each scale indicate greater agreement with that appraisal. The instrument is not intended to provide an overall score. Mean scores can be calculated for each of the primary appraisal sub-scales.

2.3 Depression

From time to time, everyone feels a little bit blue, lazy, or so let’s call it depressed. But when this particular state of mind persists or occur more often, people start to think

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 19 about it, and they might consider seeking a professional help. In order to assess if the person really suffers from depression, the professionals use various techniques, such as structured questionnaires, personal interviews and their own observation. Depression is a mental state recognized as a by the American Psychiatric Association

(APA, 2014).

2.3.1 Types of depression

Depressive disorders belong to the Group of Mood disorder that have a disturbance in mood as the predominant feature (APA, 2014). The Mood disorders are divided into the Depressive disorders, the Bipolar Disorders, and two disorders based on etiology,

Mood disorders due to a general medical condition, and Substance induced mood disorder (APA, 2014). The Depressive disorders are distinguished from the Bipolar disorders by the fact that there is no history of ever having had a Manic, Mixed, or

Hypomanic episode. For the purposes of this research paper, only Major depressive disorder will be taken into account, as the researchers never found a positive correlation between untreated coeliac disease and other groups of Mood disorders, except

Depressive ones.

To become officially diagnosed as depressed, the American Psychiatric Association’s

Diagnostic and Statistical Manual requires a certain number of symptoms to be present for at least a particular length of time, in the absence of certain other symptoms or conditions (APA, 2014). Major depressive disorder is characterized by A) one or more depressive episodes, meaning at least two weeks of depressed mood or loss of interest accompanied by at least five additional symptoms of depression that are present most of the day, nearly every day such as: i) depressed mood, ii) diminished interest or

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 20 pleasure in all, or almost all, activities, iii) significant weight loss when not dieting or weight gain, decrease or increase in appetite, iv) insomnia or hypersomnia, v) psychomotor agitation or retardation, vi) fatigue or loss of energy, vii) feelings of worthlessness or excessive or inappropriate guilt, viii) diminished ability to think or concentrate, or indecisiveness, ix) recurrent thoughts of death, recurrent suicidal ideation without a specific plan, or a suicidal attempt or a specific plan for committing suicide (APA, 2014). B) The symptoms described above do not meet the criteria for a mixed episode (APA, 2014). C) The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning (APA,

2014). D) The symptoms are not due to the direct physiological effects of a substance or a general medical condition (APA, 2014). E) The symptoms are no better accounted for by Bereavement (APA, 2014). Major depressive disorder is an episodic disorder, because symptoms tend to be present for a period of time and then disappear (Kring,

Johnson, Davison, & Neale, 2012).

The lifetime prevalence of depression varies from 10% to 25% for women and from

5% to 12% for men (Kring, Johnson, Davison, & Neale, 2012). The prevalence rates appear to be unrelated to ethnicity, education, income, or marital status (Kring,

Johnson, Davison, & Neale, 2012), even though the prevalence of depression varies considerably across cultures, probably because in some cultures seeking professional help of psychologist or psychiatrist is not appropriate. The median age of onset is now the late teens to early 20s (Kring, Johnson, Davison, & Neale, 2012). Depression disorders are often associated, or comorbid, with other psychological problems. About

60% of people who meet the criteria for diagnosis of Major depressive disorder during

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 21 their lifetime also will meet the criteria for diagnosis of an anxiety disorder at some point (Kessler, Berglund, & Demler, 2003). Other common comorbid conditions include substance disorders, sexual dysfunctions, and personality disorders (Kessler,

Berglund, & Demler, 2003).

2.3.2 Factors of Depression

A combination of genetic/neurobiological, psychological, and environmental factors can lead to depression (Kring, Johnson, Davison, & Neale, 2012). As regards the neurobiological factors, the recent studies showed heritability up to 37% for Major depressive disorder (Kring, Johnson, Davison, & Neale, 2012). The studies revealed that people with depression suffer from dopamine receptor dysfunction, which explains the deficits in pleasure, motivation and energy and that they also have less sensitive serotonin receptors caused by depleted levels of tryptophan. Researchers also find structural changes in the brain of people suffering from depression using brain imaging techniques. The changes are primarily present in four brain parts. Firstly, there is an elevated activity of the amygdala when exposed to emotional stimuli that sends signals to activate hypothalamic-pituitary-adrenocortical axis (HPA axis) and it triggers the release of cortisol, the main stress hormone. Secondly, there is a greater activation in the subgenual anterior cingulate responsible for regulation. And lastly there is a diminished activation of the hippocampus and in the dorsolateral prefrontal cortex which influence memory, cognition and executive functioning (Kring, Johnson,

Davison, & Neale, 2012).

Regarding the psychological factors, two factors, neuroticism and cognition, are highly correlated with depression (Kring, Johnson, Davison, & Neale, 2012). Neuroticism is a

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 22 personality trait that involves a tendency of an individual to react to events with greater-than-average negative affect. Regarding the cognition, the negative thoughts and believes of depressed people are often referred to as a major cause of depression.

The psychologists Aaron Beck formulated a Cognitive theory of depression, in which depressed clients acquire negative scheme of the world in childhood and adolescence as an effect of some stressful life events and this learned negative schemas are later in life being activated when these people are exposed to stressful situations. Aaron Beck also described the so called negative triad of depressed individuals, meaning the negative schemas and cognitive biases resulting in negative evaluations of themselves, world and the future. He explained following biases: the arbitrary inference, making conclusions without evidence, usually catastrophizing, the selective abstraction, making conclusions based on isolated details, leaving other information ignored, the over-generalization, holding beliefs on a basis of single occurrence which is then applied to everything, and, the magnification and minimization in which the individual perceive a situation in a greater or lesser light than the situation deserves (Kring,

Johnson, Davison, Neale, 2012). Another contributing theory explaining the onset of depression is a rumination theory formulated by a psychologist Nolen Hoeksama. It is characterized by the tendencies to repetitively dwell on sad experiences and thoughts again and again (Kring, Johnson, Davison, & Neale, 2012). As regards the environmental factors, stress diathesis theory asserts that if the combination of predisposition an individual has inherited and stress exceeds a threshold, the person will develop a disorder, in this case depression.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 23

2.3.3 Measures of Depression

There are several psychometric tools that are available for measuring depression in adults. The list includes the Beck Depression Inventory (BDI-II), the Center for

Epidemiologic Studies Depression (CES-DR), the Zung Depression Rating Scale, the

Montgomery-Asberg Depression Rating Scale, The Hamilton Rating Scale for

Depression, the Wechsler Depression Rating Scale, The Raskin Three Area Depression

Rating Scale, The Inventory of Depressive Symptomatology, and the Quick Inventory for Depressive Symptomatology (Neukrug & Fawcett, 2015).

2.3.4 The Beck Depression Inventory-II

In 1961 American psychologist Aaron T. Beck introduced psychometric tool for assessing clinical depression called The Beck Depression Inventory. This self-report tool reflects Beck’s Cognitive theory of depression and since its development it has become the most frequently used psychometric tool for assessing clinical depression

(Neukrug & Fawcett, 2015). The current version of the tool is referred to as the BDI-II.

It contains 21 group of questions, each of the answer scored on a scale value in the range of 0 to 3. The higher the score the higher probability of occurrence and level of depression. The tool asks the participant to evaluate each statement characterizing how they were feeling during the past two weeks. The maximum score is 63. According to the BDI-II manual, scores of 0 to 13 represent minimal depression, scores of 14 to 19 mild depression, scores of 20 to 28 moderate depression, and scores above 29 severe depression. In 2013, the researchers reviewed the psychometric properties of BDI-II

(Yuan-Pang & Gorenstein, 2013). In the review 118 research articles concerning BDI-

II were selected through a search of electronic databases (MEDLINE and PsychINFO),

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 24 that were published within the years of 1996 and 2012. These samples were then allocated into three groups, i.e. non-clinical, psychiatric and medical samples. The results showed that the reliability of the instrument tested by Pearson’s coefficient ranged from 0.73 to 0.96 (Yuan-Pang & Gorenstein, 2013). The criterion-based validity showed good sensitivity and specificity for detection of depression. The content validity was narrower than the former version of BDI. The overall rating of an instrument was very satisfactory referring to the BDI-II as good self-report measure possible to be used in both non-clinical and clinical settings (Yuan-Pang & Gorenstein,

2013).

2.4 Cognitive Appraisals and Depression

When people face any situation that might be stressful, especially when this situation is related to their health and/or well-being, cognitive appraisal is carried out by the mental operations of thinking and reasoning (Ahmad, 2005). Lazarus and Folkman emphasized that the cognitive appraisal of stressors have an impact on individual differences in stress responses and influence the selection of coping behavior as well as the extent of the stress response (Ahmad, 2005).

As regards the association between cognitive appraisal and depression, previous studies have suggested that challenge appraisal was associated with low depression and anxiety, while threat appraisal was associated with depression and anxiety, and challenge appraisal was associated only with anxiety but not depression (Salovey &

Birnbaum, 1989). The reduction of the appraisal of threat and improvement in the perception of control over the situation are generally thought to be important in stress management (Salovey & Birnbaum, 1989).

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 25

2.4.1 Cognitive Appraisal and Depression in Patients with Coeliac Disease

Because the depressive symptoms and anxiety disorders are very common among adult patients diagnosed with coeliac disease, and depressive and disruptive behavioral disorders are highly common among coeliac adolescents (Accomando, et al., 2005), it suggests a possible association between psychological abnormalities and coeliac disease. It is line with the results from longitudinal research based on 66 815 adult participants (Ludvigsson, Reutfors, Osby, Ekbom, & Montgomery, 2007). In 2011 the most recent study proved that 37% of coeliac patients met the threshold for depression

(Arigo, Anskis, & Smyth, 2012) which corresponds to the results of 1998 study that reported that one third of coeliac diseased patients are diagnosed with depression

(Ciacci, Iavarone, Mazzacca, & De Rosa, 1998). The prevalence of depression among coeliac diseased adolescents’ reaches 31% compared to 7% of adolescents without the disease (Carta, Hardoy, Boi, & Mariotti, 2002).

From the above referred clinical studies, it is highly probable that there is a positive correlation between coeliac disease and psychological disturbances in the form of depression and anxiety. Studies researching the connection between depression and coeliac disease are focused mainly on three reasons why this correlation exists. The first one is the malabsorption of nutrients necessary for normal brain functioning. The second one is an immunological reaction in the small intestine in which the body cells attack their own healthy cells which leads to the production of antibodies. The third one is the inflammation in the body, which influence negatively the proper functioning of both the peripheral and the central nervous system. It is highly probable that all these three reasons are contributing factors to this connection.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 26

Besides these biological factors, the cognitive appraisal of having coeliac disease and necessity to adhere to life-long gluten-free diet might be a reason why the depression is more frequently diagnosed in patients with coeliac disease compared to general population. In this sense, the patients might have appraised the fact that they have coeliac disease and must adhere to life-long diet rules as threat which might contribute to the manifestation of clinical depression.

2.5 Model Used in the Current Research

In this research project, we employed the Lazarus and Folkman transactional model of cognitive appraisal to explain the hypothesized association between the diagnosis of coeliac disease, cognitive appraisal and depression. The premise of the model is that certain situation, especially those who relate to the health, triggers stressful cognitive appraisal. This appraisal might impact the coping strategies and consequently might contribute to the clinical depression. Besides the cognitive appraisal we hypothesize that gender and the diagnosis of coeliac disease are also contributing factors for the clinical depression.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 27

2.6 Hypotheses

The main research question “Is gender, cognitive appraisal and diagnosis of coeliac disease contributing factors for clinical depression?” is going to be answered via quantitative approach to research.

To answer the above stated research question, we hypothesize that:

Ho1: Gender, diagnosis of coeliac disease, and cognitive appraisal of threat, harm/loss, challenge, and benign/irrelevant are not useful in predicting clinical depression.

Ha1: Gender, diagnosis of coeliac disease, and cognitive appraisal of threat, harm/loss, challenge, and benign/irrelevant are useful in predicting clinical depression.

Moreover, we hypothesize that:

Ho2: Gender does not contribute to the model.

Ha2: Gender contributes to the model.

Ho3: Diagnosis of coeliac disease does not contribute to the model.

Ha3: Diagnosis of coeliac disease contributes to the model.

Ho4: Threat type of cognitive appraisal does not contribute to the model.

Ha4: Threat type of cognitive appraisal contributes to the model.

Ho5: Harm/loss type of cognitive appraisal does not contribute to the model.

Ha5: Harm/loss type of cognitive appraisal contributes to the model.

Ho6: Challenge type of cognitive appraisal does not contribute to the model.

Ha6: Challenge type of cognitive appraisal contributes to the model.

Ho7: Benign/irrelevant type of cognitive appraisal does not contribute to the model.

Ha7: Benign/irrelevant type of cognitive appraisal contributes to the model.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 28

2.7 Theoretical Assumptions

The current study investigates an association between cognitive appraisal, diagnosis of coeliac disease and depression. This thesis particularly focuses on four types of cognitive appraisal, i.e. threat, harm/loss, challenge, and benign/irrelevant as predictors of depression in patients with coeliac disease. From the previous studies, we expect only the threat type to be associated with depression. Moreover, we expect positive correlation between gender, diagnosis of coeliac disease and clinical depression, as depression rates in women and in patients with coeliac disease are higher compared to the general population.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 29

Method

3.1 Introduction

The main aim of the research study was to examine the impact of cognitive appraisal of living with the diagnosis of coeliac disease on the increased level of depression among patients with coeliac disease. We distributed an instrument via the Association for the

Coeliac Disease in the Czech Republic and sampled 215 participants. The participants answered the instrument, consisting of two standardized scales and demographic and other supplementing information. After gathering data from the participants, we computed and interpreted the results in order to analyze the association between cognitive appraisal, diagnosis of coeliac disease and depression.

3.2 Research Design

The research is an explanatory study to investigate the association between cognitive appraisal, diagnosis of coeliac disease and depression. We used a non-experimental quantitative method using regression analysis. The quantitative approach was appropriate to employ in this research because it quantifies prior-defined variables and generalizes the results from those who have participated in the research to a wider population (Babbie, 2010).

A multiple regression analysis was used to assess the relationship between cognitive appraisal and depression in patients with coeliac disease. We examined whether a certain type of cognitive appraisal, gender, and diagnosis of coeliac disease might predict depression. A survey was used to receive the data. The independent variables were cognitive appraisal, diagnosis and gender. The cognitive appraisal was

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 30 operationalized in terms of benign/irrelevant, harm/loss, threat, and challenge type of cognitive appraisal and it was measured by CAHS instrument. The dependent variable was depression. The depression was measured by BDI-II instrument. It is suitable to use multiple regression analysis in order to learn about the relationship between independent and dependent variables.

3.3 Participants

We distributed the research instrument through the Association for Gluten-Free Diet in the Czech Republic. The participants who decided to participate in the survey filled in the informed consent and the questionnaire online, using the Google forms platform.

We collected 215 responses. The age of participants ranged between 11 and 69 years, four participants were under the age of 18, out of which three of them were 17 years old and one was 11 years old. The mean age of the sample was 33.92 and the age or participants varied (SD = 11.01). The sample population consisted of 25 males

(11.63%) and 190 females (88.37 %).

3.4 Ethics

All participants voluntarily decided if they wanted to participate in the study or not. If any participant decided to participate in the research, he or she must tick that they have read and understood the purpose of the study in the informed consent form, prior to entering any data. The answers of the participants were analyzed anonymously. If the person realizes that he does not know enough about the coeliac disease and gluten-free diet, there were contact details on a support group run by the members of the

Association for Gluten-Free Diet in the Czech Republic in the informed consent.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 31

3.5 Measures

The participants completed two standardized tests: Cognitive Appraisal of Health Scale

(CAHS), where the term health was substituted with coeliac disease and gluten-free diet, and the current version of the Beck Depression Inventory (BDI-II). Also, they filled in open ended questions related to living with coeliac disease and adhering to gluten-free diet, and sociodemographic data closed questions.

As regards the CAHS, we developed a measure of the cognitive appraisal of stress related to having coeliac disease by modification of the 28-item Cognitive Appraisal of

Health Scale (CAHS, Kessler, 1998). The CAHS was modified by changing the term

“health problem” with the term “coeliac disease and gluten-free diet”, for example, “I have a lot to lose because of this health problem”, became “I have a lot to lose because of coeliac disease and gluten-free diet”. The CAHS is a suitable tool because it measures the primary as well as the secondary appraisal of stressors. Primary appraisal is measured by four subscales: challenge (6 items), threat (5 items), harm/loss (8 items), and benign/irrelevant (4 items) and secondary appraisal are measured by 5 items. All questions were scored on a 5-item Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). Factors scores are the sum of items divided by the number of items. Higher scores on the item scale will indicate greater agreement with the appraisal.

As regards the depression, we used the standardized current version of Beck

Depression Inventory test, BDI-II. This test contains 21 statements, each of the answer scored on a scale value in the range of 0 to 3. Higher scores indicate higher probability of occurrence and level of depression. The maximum score is 63. According to the

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 32

BDI-II manual, scores of 0 to 13 represent minimal depression, scores of 14 to 19 mild depression, scores of 20 to 28 moderate depression, and scores above 29 severe depression.

The sociodemographic questionnaire contained close-ended questions, the supplementary questions regarding the diagnosis of coeliac disease and gluten-free diet contained both open-ended and close-ended questions.

3.6 Procedure

The University ethics committee approved the study. The participants were approached via the Association for Gluten-Free diet in the Czech Republic. The request to fill in the questionnaire with a link to the Google forms was placed on the Association websites in the section , webpage https://www.celiak.cz/Oznameni and published in their monthly bulletin, regularly sent to all their members, as well as published on their

Facebook Page. The questionnaire was available in both languages, Czech and English, though only Czech version of the questionnaire was filled in by the participants.

Data were collected within the period of four subsequent weeks, starting the 1st

November and ending on the 30th November 2016. The collection of data followed the random sampling principle and the principles of cross-sectional research.

3.7 Analysis

We processed the data from online questionnaires created in Google forms. We transferred the data to an Excel file. We checked if we had any missing data. Then, we input the collected data into SPSS (IBM SPSS Statistics) and we performed the overall descriptive statistics of all variables. We analyzed the retrospective association between

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 33 cognitive appraisal, diagnosis of coeliac disease and depression using multiple regression analysis in order to examine if gender, the cognitive appraisal and diagnosis of coeliac disease are contributing factors to depression or not. Also, we tested normality to identify if the variables in the random sample were normally distributed or not.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 34

Results

4.1. Introduction

The findings include the results of the application of the method, the descriptive statistics on cognitive appraisal, diagnosis of coeliac disease and depression, its normality assessment, the results of the statistical procedures, and the test of hypotheses.

4.2. Results of the Application of the Method

A multiple regression analysis was used to assess the relationship between cognitive appraisal, gender, diagnosis of coeliac disease and depression. We examined whether gender, cognitive appraisal and diagnosis of coeliac disease are contributing factors for clinical depression. The independent variables were cognitive appraisal, diagnosis and gender. The cognitive appraisal was operationalized in terms of benign/irrelevant, harm/loss, threat, and challenge type of cognitive appraisal and it was measured by

CAHS instrument. The dependent variable was depression. The depression was measured by BDI-II instrument. It was suitable to use multiple regression analysis to learn about the relationship between independent and dependent variables.

4.3. Descriptive Statistics of Main Variables

4.3.1. Overall Descriptive Statistics of Main Variables

Two-hundred-fifteen subjects voluntarily decided to participate in the study. Their mean depression score was 8.92 (no depression based on the Beck Depression

Inventory-II manual), higher compared to their median score (Mdn = 6.0). The most frequent depression score was 0. The scores ranged from 0 to 52. However, based on

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 35 the large standard deviation and variance (SD = 9.78, S2= 95.71), it looks like the depression scores varied quite a bit.

Table 1

Descriptive statistics of depression scores in participants

n M Mdn Mode SD S2 Min Max

Depression 215 8.92 6 0 9.78 95.71 0 52

Notes. n = sample size; M = Mean; Mdn = median; SD = standard deviation; S2 = variance; Min = minimum; Max = maximum

As far as the cognitive appraisal of threat, one-hundred-forty-four participants filled in the CAHS data questionnaire, one-hundred-forty-one with coeliac disease and on gluten-free diet and three non-coeliacs with gluten-free diet because of different physical condition requiring their adherence of gluten-free diet. The sample mean threat appraisal score was 10.31, slightly higher compared to the median score (Mdn =

9.00). The most frequent threat type of cognitive appraisal score was 5. The scores ranged from 5 to 24. However, based on the large standard deviation and variance (SD

= 4.59, S2= 21.07), it looks like the threat type of cognitive appraisal scores varied quite a bit.

As concerns the cognitive appraisal of challenge, one-hundred-forty-four participants filled in the CAHS data questionnaire, one-hundred-forty-one with coeliac disease and on gluten-free diet and three non-coeliacs with gluten-free diet because of different physical condition requiring their adherence of gluten-free diet. The sample mean challenge appraisal score was 31.66, lower compared to the median score (Mdn =

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 36

33.00). The most frequent challenge type of cognitive appraisal score was 32. The scores ranged from 16 to 40. However, based on the large standard deviation and variance (SD = 5.34, S2= 28.53), it looks like the challenge type of cognitive appraisal scores varied quite a bit.

As much as the cognitive appraisal of harm/loss, one-hundred-forty-four participants filled in the CAHS data questionnaire, one-hundred-forty-one with coeliac disease and on gluten-free diet and three non-coeliacs with gluten-free diet because of different physical condition requiring their adherence of gluten-free diet. The sample mean harm/loss appraisal score was 18.01, slightly higher compared to the median score

(Mdn = 16.00). The most frequent harm/loss type of cognitive appraisal score was 12.

The scores ranged from 9 to 39. However, based on the large standard deviation and variance (SD = 7.08, S2= 50.10), it looks like the harm/loss type of cognitive appraisal scores varied quite a bit.

As concerns the cognitive appraisal of benign/irrelevant, one-hundred-forty-two participants filled in the CAHS data questionnaire, one-hundred-forty-one with coeliac disease and on gluten-free diet and one non-coeliacs with gluten-free diet because of different physical condition requiring their adherence of gluten-free diet. The sample mean benign/irrelevant appraisal score was 16.75, slightly lower compared to the median score (Mdn = 17.00). The most frequent benign/irrelevant type of cognitive appraisal score was 19. The scores ranged from 7 to 25. However, based on the large standard deviation and variance (SD = 4.04, S2= 16.29), it looks like the benign/irrelevant type of cognitive appraisal scores varied quite a bit.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 37

Table 2

Descriptive statistics of cognitive appraisal scores in participants

Cognitive n M Mdn Mode SD S2 Min Max Appraisal Type

Threat 144 10.31 9 5 4.59 21.07 5 24

Challenge 144 31.66 33 32 5.34 28.53 16 40

Harm/loss 144 18.01 16 12 7.08 50.10 9 39

Benign/irrelevant 142 16.75 17 19 4.04 16.29 7 25

Notes. n = sample size; M = Mean; Mdn = median; SD = standard deviation; S2 = variance; Min = minimum; Max = maximum

4.3.2. Descriptive Statistics and Normality Assessment of Depression Scores by

Gender

One-hundred-ninety female, i.e. 88.4% of the whole sample, and twenty-five, i.e.

11.6% males of the whole sample, voluntarily participated in our study. The sample mean depression score was 8.92. Female participants had quite greater average depression scores (M = 9.24) compared to male ones (M = 6.52). The median score was 7.00 in females and 3.00 in males. The scores ranged from 0 to 52 in females and from 0 to 29 in males. However, based on the large standard deviation and variance in females (SD = 9.99, S2 = 99.76) and in males (SD = 7.81, S2 = 61.01), it looks like the scores varied quite a bit.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 38

Table 3

Descriptive statistics of depression scores in female participants

n M Mdn Mode SD S2 Min Max

Depression 190 9.24 7 0 9.99 99.76 0 52

Notes. n = sample size; M = Mean; Mdn = median; SD = standard deviation; S2 = variance; Min = minimum; Max = maximum

Table 4

Descriptive statistics of depression scores in male participants

n M Mdn Mode SD S2 Min Max

Depression 25 6.52 3 0 7.81 61.01 0 29

Notes. n = sample size; M = Mean; Mdn = median; SD = standard deviation; S2 = variance; Min = minimum; Max = maximum

Scores were not normally distributed for females with a skewness of 1.61 (SE = 0.18) and kurtosis of 2.56 (SE = 0.35) and for males with a skewness of 1.38 (SE = 0.46) and kurtosis of 1.50 (SE = 0.90). Assessment by Shapiro-Wilk’s test confirmed that the scores are not normally distributed for females as well as for males (p < 0.05). For visual inspection see their histograms in the annex. (see Annex C, Charts 1 and 2).

Table 5

Test of Normality Female Male Shapiro-Wilk df Shapiro-Wilk df Statistic Statistic

Depression 0.823** 190 0.822** 25 Note. * = p < 0.05, ** p < 0.01

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 39

4.3.3. Descriptive Statistics and Normality Assessment of Depression Scores by Diagnosis

Two-hundred-fifteen subjects voluntarily decided to participate in the study. One- hundred-forty-one participants stated that they have been diagnosed with coeliac disease, and seventy-four participants confirmed not having coeliac disease.

Participants with coeliac disease had quite greater average depression scores (M =

9.15) compared to non-coeliacs (M = 8.49). The median score was 6.00 in coeliacs and

7.50 in non-coeliacs. The scores ranged from 0 to 42 in coeliacs and from 0 to 52 in non-coeliacs. However, based on the large standard deviation and variance in coeliacs

(SD = 9.98, S2 = 99.57) and in non-coeliacs (SD = 9.45, S2 = 89.32), it looks like the scores varied quite a bit.

Table 6

Descriptive statistics of depression scores in participants with coeliac disease

n M Mdn Mode SD S2 Min Max

Depression 141 9.15 6 0 9.98 95.67 0 42

Notes. n = sample size; M = Mean; Mdn = median; SD = standard deviation; S2 = variance; Min = minimum; Max = maximum

Table 7

Descriptive statistics of depression scores in participants without coeliac disease

n M Mdn Mode SD S2 Min Max

Depression 74 8.49 7.5 0 9.45 89.32 0 52

Notes. n = sample size; M = Mean; Mdn = median; SD = standard deviation; S2 = variance; Min = minimum; Max = maximum

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 40

Scores were not normally distributed for both groups, i.e. those who reported being diagnosed with coeliac disease with a skewness of 1.388 (SE = 0.204) and kurtosis of

1.365 (SE = 0.406) and for those without coeliac disease with a skewness of 2.161 (SE

= 0.279) and kurtosis of 6.193 (SE = 0.552). Moreover, assessment by Shapiro-Wilk’s test confirmed that the scores are not normally distributed for those with and without the diagnoses of coeliac disease (p < 0.05). For visual inspection see their histograms in the annex. (see Annex C, Charts 3 and 4).

Table 8

Test of Normality Participants with the Participants without the diagnosis diagnosis of Coeliac disease Shapiro-Wilk df Shapiro-Wilk df Statistic Statistic

Depression 0.831** 141 0.785** 74

Note. * = p < 0.05, ** p < 0.01

One-hundred-forty-one subjects stated that they have been diagnosed with coeliac disease. Their mean length (in years) being diagnosed with coeliac disease score was

7.57, higher compared to their median score (Mdn = 5.0). The most frequent length being diagnosed with coeliac disease score was 1. The scores ranged from 1 to 45.

However, based on the large standard deviation and variance (SD = 7.75, S2= 60.01), it looks like the length of diagnosis scores varied quite a bit.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 41

Table 9

Descriptive statistics of length being diagnosed with coeliac disease scores in participants

n M Mdn Mode SD S2 Min Max

Length 141 7.57 5 1 7.75 60.06 1 45 (in years)

Notes. n = sample size; M = Mean; Mdn = median; SD = standard deviation; S2 = variance; Min = minimum; Max = maximum

4.4. Test of Hypotheses

A multiple regression was run to predict depression from gender, the diagnosis of coeliac disease and four cognitive appraisal types, i.e. threat, harm/loss, challenge, benign/irrelevant. The assumptions of linearity, independence of errors, homoscedasticity, unusual points and normality of residuals were met. These variables statistically significantly predicted depression, F (6, 130) = 5.885, p < 0.0005, adj. R2 = 0.177. All variables added statistically significantly to the prediction, p < 0.05.

Therefore, we can reject the first null hypothesis that states that gender, diagnosis of coeliac disease, and cognitive appraisal of threat, harm/loss, challenge, and benign/irrelevant are not useful in predicting clinical depression, and we cannot reject the first alternative hypothesis that states that gender, diagnosis of coeliac disease, and cognitive appraisal of threat, harm/loss, challenge, and benign/irrelevant are useful in predicting clinical depression. Regression coefficients and standard errors can be found in Table 10 (below).

The predictor gender did not add statistically significantly to the prediction, p = 0.551, i.e. p > 0.05. Thus, we cannot reject the second null hypothesis that states that the

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 42 predictor gender does not contribute to the model, and we can reject the second alternative hypothesis that states that the predictor gender contributes to the model.

The predictor diagnosis of coeliac disease did not add statistically significantly to the prediction, p = 0.883, i.e. p > 0.05. Thus, we cannot reject the third null hypothesis that states that the predictor diagnosis of coeliac disease does not contribute to the model, and we can reject the third alternative hypothesis that the predictor diagnosis of coeliac contributes to the model.

The predictor of cognitive appraisal, threat type added statistically significantly to the prediction, p = 0.023, i.e. p < 0.05. Thus, we can reject the fourth null hypothesis that states that the predictor threat type of cognitive appraisal does not contribute to the model, and we cannot reject the fourth alternative hypothesis that the predictor threat type of cognitive appraisal contributes to the model.

The predictor of cognitive appraisal, harm/loss type did not add statistically significantly to the prediction, p = 0.516, i.e. p > 0.05. Thus, we cannot reject the fifth null hypothesis that states that the predictor harm/loss type of cognitive appraisals does not contribute to the model, and we can reject the fifth alternative hypothesis that the predictor harm/loss type of cognitive appraisal contributes to the model.

The predictor of cognitive appraisal, challenge type did not add statistically significantly to the prediction, p = 0.770, i.e. p > 0.05. Thus, we cannot reject the sixth null hypothesis that states that the predictor challenge type of cognitive appraisals does not contribute to the model, and we can reject the sixth alternative hypothesis that the predictor challenge type of cognitive appraisal contributes to the model.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 43

The predictor of cognitive appraisal, benign/irrelevant type did not add statistically significantly to the prediction, p = 0.194, i.e. p > 0.05. Thus, we cannot reject the seventh null hypothesis that states that the predictor benign/irrelevant type of cognitive appraisals does not contribute to the model, and we can reject the seventh alternative hypothesis that the predictor benign/irrelevant type of cognitive appraisal contributes to the model.

Table 10

Summary of Multiple Regression Analysis Predicting Depression

Model 1

Variable B SEB β

Intercept 6.323 10.265

Gender -2.019 3.378 -0.047

Coeliac Disease -0.695 4.721 -0.012

Threat (cogn. appraisal) 0.632 0.274 0.286*

Harm/loss (cogn. appraisal) 0.122 0.187 0.086

Challenge (cogn. appraisal) 0.061 0.210 0.033

Benign/irrelevant (cogn. appraisal) -0.402 0.308 -0.162

Adjusted R2 0.177

F 5.885***

Notes: B = unstandardized regression coefficient, SEB = Standard error of the coefficient; β = standardized coefficient, *p < 0.05, *** p < 0.001

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 44

Discussion

We examined two-hundred-fifteen participants in order to understand the complex relationships between gender, diagnosis of coeliac disease, cognitive appraisal, and clinical depression. To investigate the association between the variables we used a non- experimental quantitative method using regression analysis.

Further section includes the discussion of the results of the descriptive analysis and tests of hypotheses.

5.1 Discussion of Descriptive Statistics

One-hundred-seventy-one participants (79.53 %) of the total two-hundred fifteen sample did not meet the criteria set by BDI-II for presence of symptoms of clinical depression. The mean depression score of the total sample was 8.93, however there were large standard deviation and variance within the sample.

Female scores of clinical depressions (M = 9.24) were higher compared to the male ones (M = 6.52), although still in the “no depression” range according to the BDI-II manual. Surprisingly, the gender difference was not as statistically significant as expected. It could have been influenced by very low sample size of male participants.

In the study, only 25 males and 190 females participated. Therefore, the data are not as representative and comparable as we expected.

Contrary to the expectation, there was no statistically significant difference between those who claimed to be diagnosed with coeliac disease and those without it. The mean depression score in patients with coeliac disease was 9.15, while those without coeliac

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 45 disease was a bit lower, i.e. M = 8.49. In both groups the results indicate “no depression” interval based on the BDI-II manual. As it was mentioned in the results section, there were large standard deviation and variance in both groups. When we look at the sample closer, there were statistically significant differences within the participants with coeliac disease and the number of years diagnosed with coeliac disease and on gluten-free diet. There were seventy-five participants who were diagnosed with coeliac disease within a period of half a year and 5 years (Group 1) and sixty-six participants who were living with the diagnosis of coeliac disease for more than 6 years (Group 2). The mean length of being diagnosed with coeliac disease score was 7.57 years (Mdn = 5). The Group 1 participants more often reached higher depression scores compared to the Group 2. (for detail see the Table 11). Four out of five participants from Group 1 who reported not being strict at adhering the gluten-free diet achieved the highest scores of clinical depressions, as well as two participants who claimed that they do not follow diet measures at all (depression scores of 24 and 32).

Table 11

Summary of Depression Scores in Participants with Coeliac Disease

BDI –II Depression Score

# years since diagnosis No Mild Moderate Severe

0 – 5 years 53* 5* 9* 8*

6 – 45 years 57* 5* 0* 4* Notes: * Number of participants in each group

As far at the cognitive appraisal is concerned, there were statistically significant differences among the participants with coeliac disease and the time since diagnosis.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 46

There were seventy-five participants who were diagnosed with coeliac disease within a period of half a year and 5 years (Group 1) and sixty-six participants who were living with the diagnosis of coeliac disease for more than 6 years (Group 2). The Group 1 more often appraised the diagnosis of coeliac disease and diet measures as threat and/or harm/loss compared to the Group 2 (for detail see the Table 12). Moreover, the participants from Group 1 less often appraised the diagnosis of coeliac disease and diet measures as challenge and/or benign/ irrelevant compared to the Group 2. It makes completely sense. The first encounter with the diagnosis of coeliac disease leads to searching for new information about the disease as well as the diet measures. The probability of stress response is certainly much higher early after diagnoses than after getting used to it. Also, the secondary appraisal in the form of coping capabilities, is much more important in the period early after diagnosis than after certain period of living with the disease, as confirmed by the mean of Secondary appraisal in Group 1

(M = 3.15) compared to the Group 2 (M = 2.77). Though, the differences are not as high as we would have expected. Probably, the fact that the coeliac disease is in fact a chronic disease requiring life-long adherence to gluten-free diet intervenes with the daily life routines so regularly, that one must evaluate the stress related to the measures quite often. But to make such conclusions, we would need to make additional research.

Very interestingly, the cognitive appraisal type of challenge was quite high in results, that indicate that the diagnosis itself might promote higher interest in healthy diet and overall well-being. When we look at the responses to the question # 56 in Part IV of our questionnaire: “Do you see something positive on living with coeliac disease?”, 66 respondents out of 141, i.e. 46.80 % reported “Yes, I do”. In the open question # 57

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 47 that followed: “If yes, please, indicate what?”, most respondents reported three main contributors. The first one is healthy diet. That they actually need to think more about what they eat, which in turn leads to checking not only the ingredients of the food but also checking their whole diet structure. Consequently, these respondents feel better, which is the second most frequent positive. It makes completely sense from the biological point of view, because only the adherence to gluten-free diet heals the small intestinal and the clinical manifestation of coeliac disease disappears. As a third most common positive contribution participants responded having more energy, which is linked to the previous two answers.

Table 12

Mean Cognitive Appraisal Scores in Participants with Coeliac Disease

Cognitive Appraisal Type

# years since Threat Harm/loss Challenge Benign/Irrelevant diagnosis

0 – 5 years 2.28* 2.16* 3.85* 3.09*

6 – 45 years 1.78* 1.82* 4.06* 3.59* Notes: * Mean (as measured on a 5-point Likert scale) within each group

As far as the negative side of coeliac disease and gluten-free diet, most respondents stated price and increased financial demand on the family budget. It might be in fact very true, as the prices of gluten-free products in the Czech Republic are much higher compared to the normal products and patients do not get any significant financial support from the Health Insurance companies. The second most often stated drawback was related to restrictions related to eating outside home. Participants often have very

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 48 limited eating possibilities in restaurants, cafes, at work, or even on vacation, which in turn limits their social contact with friends and family. They need to prepare food at home and bring it whenever they go, which is not only time demanding but it also requires planning ahead a lot. Some respondents also stressed that they are afraid of eating outside, as staff at restaurants is not very well skilled and food could be contaminated with gluten, plus the gluten-free offer in restaurants is quite limited. The third most frequent stated disadvantage was necessity to check the food all the time, which is for most respondents quite stressful. The fourth stated disadvantage was limited supply and low quality of gluten-free products, especially outside big cities.

And finally, the fifth main disadvantage were cravings for the food the participants can no longer eat, especially for sweet and pastries.

5.2 Discussion of Test of Hypotheses

In the current research, we mainly focused on the gender, cognitive appraisal, diagnosis of coeliac disease and clinical depression because major depressive disorder tend to be higher in women, in those who appraised situation as a threat and those who are diagnosed with coeliac disease. We mostly paid attention to the relation between cognitive appraisal of having coeliac disease and clinical depression. We investigated the association between different types of cognitive appraisal in those who confirmed the diagnosis of coeliac disease and depression. As expected, the results showed that all variables added statistically significantly to the prediction, and gender, diagnosis of coeliac disease, and cognitive appraisal of threat, harm/loss, challenge, and benign/irrelevant are useful in predicting clinical depression. In this section, we discuss the assessment of each hypothesis.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 49

Contrary to the expectation there were no statistically significant differences among gender and depression. Our sample did not confirm that women would have higher prevalence rate of depression. Though, when we look at the sample closer, only 8 % of males achieved the BDI-II score equivalent to moderate or severe depression, compared to 13.69 % of females in our sample. But still the sample size of males was much lower than female ones, so we could not make any generalizations based on the results.

Furthermore, contrary to previous studies that focused on the relationship between coeliac disease and clinical depression, the diagnosis of coeliac disease itself in our sample does not contribute to the prediction of clinical depression. It might be influenced by the fact that the mean length since diagnosis in our sample (M = 7.57) was significantly higher compared to the longitudinal study Coeliac disease and risk of mood disorders by Ludvigsson et al. (2007), where the mean length of diagnosis was 2 years. Or there could be cultural differences, as no study focused on the Czech population.

Interestingly, we found out that only the threat type of cognitive appraisal added statistically significantly to the model. That means that only the small sample of those participants who appraise having the diagnosis of coeliac disease and following gluten- free diet are predicted to suffer from clinical depression. Moreover, other cognitive appraisal types such as harm/loss, challenge, and benign/irrelevant did not add statistically did not influence our model, which corresponds to the studies focused on cognitive appraisal. There was no significant association between secondary appraisal, i.e. coping skills and depression.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 50

Conclusions

6.1. Main Conclusions

To sum up, threat type of cognitive appraisal of having coeliac disease and gluten-free diet is associated with clinical manifestation of depression. No other type of cognitive appraisal of having coeliac disease influence clinical depression. Interestingly, we were not able to find any correlation between gender, diagnosis of coeliac disease and clinical depression. However, the participants mean length of diagnosis of coeliac disease was much longer than in previous studies.

6.2. Implications

The current state of research states that there are biological and cognitive reasons why patients with coeliac disease suffer from psychological disturbances more often than general population.

This research examined the cognitive reasons, more precisely cognitive appraisal of being diagnosed with coeliac disease and having gluten-free diet. It assumed that coeliac patients would appraise it as stressful and in the form of threat or harm/loss appraisal, which would lead to clinical manifestation of depression. The research confirmed that the threat type of cognitive appraisal of having coeliac disease and gluten-free diet is associated with clinical manifestation of depression, though the number of participants who appraised having coeliac disease was not large. Despite that fact that this threat appraisal type is not as frequent the association between gender, diagnosis of coeliac disease, cognitive appraisal and depression should be taken into consideration by psychotherapist and counsellors, particularly if the depressed patients

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 51 do not respond well to psychological treatment or psychopharmacological therapy. In this case the coeliac disease could be present in its silent form and psychological symptoms might be the only clinical manifestations of coeliac disease. Also, the psychotherapists and counsellors should be aware that the threat type of cognitive appraisal related to the coeliac disease and gluten-free diet might elevate the clinical symptoms of depression and therefore cognitive-behavioral therapy focused on changing the cognitive appraisal might be useful.

The research of cognitive appraisal of having coeliac disease might bring new insight into cognitive aspects of living with a chronic disease. In response to the results of this research, qualitative research might follow. Focus group and semi-structured interview techniques might reveal more about attitudes, perceptions, and beliefs of patients living with coeliac disease and on life-long gluten-free diet.

6.3. Limitations

We had a limited sample of participants. There were in total 215 participants in the study, 141 with the diagnosis of coeliac disease and 74 without the diagnosis. It means that we could not make any generalization of the findings to the wider population.

Also, we do not know if the participants suffered from any other serious health- problems that would have impact on the depression rates among the population.

Moreover, the participants in the study were homogenous in terms of demographics, i.e. approached by the Association for Coeliac Disease, so it is impossible to make any further generalizations.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 52

Also, we measured the cognitive appraisal and depression with self-report questionnaires. A self-report questionnaire is beneficial in terms of simplicity and speed but it could be biased, which negatively affects obtaining “true” results.

Therefore, in future research, combining qualitative as well as quantitative approach to analysis would be beneficial.

Moreover, from the present study, it is impossible to make causal attributions or determine the directionality of the relationships between variables.

But despite these limitations, the present research enhances our understanding of the relationships between gender, diagnosis of coeliac disease, cognitive appraisal and depression.

6.4. Suggestions for Future Research

Further research should aim to replicate the findings in larger population of participants with more equal gender size, and explore the potential differences of cognitive appraisal among depressed and non-depressed participants with coeliac disease.

Moreover, further research could focus on the path analysis model guided by the

Transactional Theory of Stress that hypothesize that cognitive appraisals lead to coping strategies, which in turn lead to more or less depressive symptoms and therefore focus more on the secondary appraisal. In addition, longitudinal study that would focus on those diagnosed with coeliac disease at different points since diagnosis and their cognitive appraisal would bring more insight into the effect of time, coping strategies and depression.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 53

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Annex A: Informed Consent

Dear Participant,

Thank you for taking part in my bachelor thesis research. I am a student at State University of New York / Empire State College, Psychology Major. My research examines the impact of cognitive appraisal of having coeliac disease on depression. It takes about 20 minutes to complete the questions in the survey.

The research is anonymous and does not include any information that could identify you. This form signed by you is not submitted with the results of my research. If you have any questions, please ask me for clarifications. If you have any questions afterwards, you can contact me via my email: [email protected]. If you have any questions regarding the coeliac disease and gluten-free diet, please contact the members of the Association of Coeliac Disease through [email protected] or visit the website www.celiak.cz. They provide regular support group meetings where you can ask any question you like.

I have read and understood the research and want to participate in the study (please tick one)

Yes No

I am 18 years of age or older (please tick one)

Yes No

Name

Date

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 58

Annex B: Survey

Questionnaire respondent #

SURVEY

Instructions:

Dear Participant,

My name is Michaela Konigova and I am conducting my research for State University of New York/Empire State College.

This questionnaire is designed to measure the effects of cognitive appraisal in people living with coeliac disease. It is a pilot version of a questionnaire designed only for the purposes of this research. It consists of 5 parts, and before each part there are instructions you should follow.

Completion of the questionnaire will take you no more than 20 minutes of your time.

The questionnaire is fully anonymous. There are no right or wrong answers.

In case you have a question, please do not hesitate to contact me on my email address: [email protected].

Thank you very much for cooperation and completing the questionnaire.

COGNITIVE APPRAISAL, COELIAC DISEASE, DEPPRESSION 59

Part I

Instructions: This part consists of 28 statements. Please read each statement carefully and respond to each item based on your appraisal of having coeliac disease. There is a 5-point scale ranging from 1 (strongly disagree) to 5 (strongly agree), the higher the score on each scale or item the greater agreement with that appraisal you have.

Disagree Disagree Neither disagree Agree Agree Strongly nor agree Strongly 1 2 3 4 5

1. I have not been able to do what I want to do because of coeliac disease/gluten-free diet ____ 2. Coeliac disease is frightening to me ____ 3. Coeliac disease is not stressful to me ____ 4. Things will only get worse because of this disease ____ 5. This disease will not go well ____ 6. Coeliac disease has damaged my life ____ 7. I am able to do what I want despite having coeliac disease ____ 8. I have lost interest in the things around me ____ 9. I have had to give up a great deal because of coeliac disease ____ 10. I can beat this health problem despite the difficulties ____ 11. I can control what will happen to me ____ 12. This health problem won’t get me down ____ 13. I have a sense of loss over the things I can no longer do/eat ____ 14. I feel I can handle this health problem and diet ____ 15. I have nothing to lose because of coeliac disease ____ 16. I have a lot to lose because of coeliac disease ____ 17. I worry about what will happen to me ____ 18. Relationships with my family and friends have suffered ____ 19. I have been harmed in some way because of coeliac disease ____ 20. I do not think much about coeliac disease ____ 21. Coeliac disease has caused me to learn more about myself ____ 22. I have been hurt by being diagnosed with coeliac disease ____ 23. There is a lot I can do to overcome this health problem ____ 24. Coeliac disease does not affect my life____ 25. I have to hold myself back because of coeliac disease____ 26. I have nothing to do with coeliac disease____ 27. I need to know more about coeliac disease____ 28. I have to accept or get to use to the fact that I have coeliac disease____

Part II

Instructions: This part consists of 21 groups of statements. Please read each group of statements carefully, and then pick out one statement in each group that best describes the way you have been feeling during the past year, including today. Circle the statement. If several statements in the group seem to apply equally well, circle the highest number of that group.

29 Sadness 0 I do not feel said 1 I feel sad much of the time 2 I am sad all the time 3 I am so sad or unhappy that I cannot stand it

30 Pessimism 0 I am not discouraged about my future 1 I feel more discouraged about my future than I used to be 2 I do not expect things to work out for me 3 I feel my future is hopeless and will only get worse

31 Past Failure 0 I do not feel like a failure 1 I feel I have failed more than I should have 2 As I look back on my life, all I can see is a lot of failures. 3 I feel I am a total failure as a person.

32 Loss of Pleasure 0 I get as much pleasure as I ever did from things I enjoy 1 I don't enjoy things as much as I used to 2 I get very little pleasure from the things I used to enjoy 3 I can’t get any pleasure from the things I used to enjoy

33 Guilty Feelings 0 I don't feel particularly guilty 1 I feel guilty over many things I have done or should have done 2 I feel quite guilty most of the time 3 I feel guilty all the time.

34 Punishment Feelings 0 I don't feel I am being punished 1 I feel I may be punished 2 I expect to be punished 3 I feel I am being punished

35 Self-Dislike 0 I feel the same about myself as ever 1 I have lost confidence in myself 2 I am disappointed in myself 3 I dislike myself

36 Self-Criticalness 0 I don’t criticize or blame myself more than usual 1 I am more critical of myself than I used to be 2 I criticize myself for all my faults. 3 I blame myself for everything bad that happens.

37 Suicidal Thoughts or Wishes 0 I don't have any thoughts of killing myself 1 I have thoughts of killing myself, but I would not carry them out 2 I would like to kill myself 3 I would kill myself if I had the chance

38 Crying 0 I don't cry anymore than I used to 1 I cry more than I used to 2 I cry over every little thing 3 I feel like crying, but I can’t

39 Agitation 0 I am no more restless or wound up than usual 1 I feel more restless or wound up than usual 2 I am so restless or agitated that it’s hard to stay still 3 I am so restless or agitated that I have to keep moving or doing something

40 Loss of Interest 0 I have not lost interest in other people or activities 1 I am less interested in other people or things than before 2 I have lost most of my interest in other people or things 3 It’s hard to get interested in anything

41 Indecisiveness 0 I make decisions about as well as I ever 1 I find it more difficult to make decisions than usual 2 I have much greater difficulty in making decisions than I used to 3 I have trouble making any decisions

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42 Worthlessness 0 I do not feel I am worthless 1 I don’t consider myself as worthwhile and useful as I used to 2 I feel more worthless as compared to other people 3 I feel utterly worthless

43 Loss of Energy 0 I have as much energy as ever 1 I have less energy than I used to have 2 I don’t have enough energy to do very much 3 I don’t have enough energy to do anything

44 Changes in Sleeping Pattern 0 I have not experienced any change in my sleeping pattern 1 a. I sleep somewhat more than usual b. I sleep somewhat less than usual 2 a. I sleep a lot more than usual b. I sleep a lot less than usual 3 a. I sleep most of the day b. I wake up 1-2 hours early and can’t get back to sleep

45 Irritability 0 I am no more irritable than usual 1 I am more irritable than usual 2 I am much more irritable than usual 3 I am irritable all the time

46 Changes in Appetite 0 I have not experienced any change in my appetite 1 a. My appetite is somewhat less than usual b. My appetite is somewhat greater than usual 2 a. My appetite is much less than usual b. My appetite is much greater than usual 3 a. I have no appetite at all b. I crave food all the time

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47 Concentration Difficulty 0 I can concentrate as well as ever 1 I can’t concentrate as well as usual 2 It’s hard to keep my mind on anything for very long 3 I find I can’t concentrate on anything

48 Tiredness or Fatigue 0 I am no more tired or fatigued than usual 1 I get more tired or fatigued more easily than usual 2 I am too tired or fatigued to do a lot of the things I used to do 3 I am too tired or fatigued to do most of the things I used to do

49 Loss of Interest in Sex 0 I have not noticed any recent change in my interest in sex 1 I am less interested in sex than I used to be 2 I am much less interest in sex now 3 I have lost interest in sex completely

Part III

Instructions: This part consists of 5 questions. Please read each question carefully, and then pick out the one statement that is valid for you. Circle the statement.

50 Are you diagnosed with Coeliac Disease? a) Yes (Please answer questions 55 to 58) b) No (Please skip questions 55 to 58. Go directly to question 59) 51 If yes, how many years are you diagnosed with Coeliac Disease? ______(write down the number of years) 52 How many family members living in your household are diagnosed with Coeliac Disease (excluding you)? ______(write down the number of family members) 53 Do you follow the gluten-free diet? c) Yes (Please answer question 58) d) No (Please skip question 58. Go directly to question 59) 54 If yes, indicate on how percentage do you follow the diet rules? ______(write down the percentage)

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Part IV

Instructions: This part is completely voluntary. If you want to add any comments, please fill in the space below. 55 What bothers you most on living with coeliac disease?

56 Do you see something positive on living with coeliac disease? a) Yes b) No 57 If yes, please indicate what.

Part V

Instructions: This part consists of 6 questions. Please read each question carefully, and then pick out the one statement that is valid for you. Circle the statement.

58 How old are you?

______

59 What is your gender?

a) Female b) Male c) Other

60 What is the highest level of education you have completed?

a) Elementary level b) High school graduate

d) Undergraduate level e) Graduate level f) Doctorate degree

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61 How many people are currently living in your household, including yourself?

______

62 Do you work for a living?

a) Yes b) No

63 If you have responded yes, what is your total combined family income in the past 12 months?

______

Insert your email address in case you would like to receive the results of the study.

______

Thank you very much for completing this questionnaire.

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Annex C Charts

Chart 1: Histogram for Females

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Chart 2: Histogram for Males

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Chart 3: Histogram for Participants with Coeliac Disease

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Chart 4: Histogram for Participants without Coeliac Disease

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Chart 5: Scatterplot

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