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Celiac.com 01/04/2020 - My interest in quality of life and celiac disease originated 4 years ago, beginning with my own diagnosis of celiac disease. I was relieved to finally have an accurate diagnosis after almost 15 years of misdiagnosis by an internist. He was convinced that my lack of energy was due to depression, but another physician, who suspected celiac disease, ran some tests and found that my lack of energy was due to limited absorption of nutrients. My psychological and subsequent physical relief over the diagnosis soon turned to frustration. I realized that I needed to adhere to a strict gluten-free diet. To my dismay, I found that many products contained gluten since it is an inexpensive binding agent. I also found it was necessary to be cautious about a variety of food products, vitamins, medications, toothpaste, lipstick and even postage stamps. I initially thought "Why wasn't I taught any of this in my nursing program?" There was a lot of information on diabetic diets but virtually nothing on the gluten-free diet. Of course, I also remembered that the teachers taught us that celiac disease only occurs in children. Being a nursing professor, I was also alarmed at how little my colleagues knew about celiac disease and the gluten free diet. After a lot of reading about celiac disease I realized how common it is for physicians to misdiagnose it. Adult celiac disease is not emphasized in medical, nursing or other allied health educational programs. I guess I should forgive my internist! I decided to educate every doctor, nurse, student, and anyone else who would listen. I am sure that people whispered "Here comes the celiac advocate again." Educating health professionals was interesting. In fact, one nurse said to me that she could never be on a gluten-free diet. I said to her "Like one has a choice". In addition, my life as a social butterfly was undergoing a metamorphosis. My pre-celiac diagnosis life consisted of social interaction with friends and associates at restaurants, parties and other social events. My husband and I also enjoyed eating out at good restaurants. In addition, I love world travel and sampling various ethnic foods. Passage: "Is this GF diet a conspiracy to ruin my life?" Compulsive grocery shopping I began to see life as having dealt me a nasty card. I do not enjoy grocery stores and I previously spent as little time as necessary shopping for food. I used the get in–get out approach. I rarely looked at food ingredients. Grocery shopping was just a means to an end. Now I must compulsively check ingredients for any hint of gluten. It has become the enemy and it is secretly hiding everywhere. And it's not just in the grocery stores. In some restaurants waiters told me that there was no gluten in the food, then arrived with a dish crusted in bread crumbs. I especially enjoyed the time when a waitress said that we do not use wheat in this dish and came out with a flour tortilla. I once interviewed a Chef who told me that she was on a gluten-free diet for one year. She said that it was the most frustrating experience of her life. She said that gluten forms the cohesive basis for most foods. It was what made baked goods nice light and fluffy. She was glad that she no longer had to be on the diet. Oh yes! Did I tell you that I have a shelf filled with many gluten-free cookbooks? They are busy collecting dust. Good intentions but not one has been opened yet. This is, in part, due to my workaholic schedule but the rest you can attribute to my lack of motivation. Health Food Stores and Gluten-free products Thank goodness for the celiac support groups. The group in my area has been so active and has encouraged the local health food stores to carry a lot more gluten-free products. To my surprise they sell GF fresh baked goods and other groceries. I was thrilled! However, I also started realizing that these products were often more expensive and some of the baked goods were very dense with calories compared to those that contain gluten. I was consuming a lot more calories than I should eat. Weight gain The next problem was gaining weight. Being able to absorb nutrients now, and the high caloric content of much of the GF products, caused me to gain weight. I decided to search for weight loss programs that could accommodate a gluten-free diet. Programs such as Jennie Craig do not accommodate GF diets. I finally found an expensive weight loss program that provided a nutrionist to develop a customized program. As with other things in my life, the program closed seven months later. Passage: Perceiving the glass is half -full Being on a Gluten-free diet has had some positive outcomes. Eating healthy and friends Shopping in health food stores has made me eat healthier than I have ever eaten in my life. My social life is diminished but I have some really good friends who consciously try to provide gluten free food for me. Others view it as though it is a preference on my part saying: "You can have a little gluten." I now know who my real friends are. Making new friends I was on a movie set a couple of months ago and a well known actor was there. I found out that he has celiac disease. It was like meeting an old friend. We talked for over an hour about gluten free diets, and the impact it has had on both our lives. You see, being a celiac helps you make new friends! A New focus for my life's work Being a celiac has also provided a new focus for my research. I am trying to help better understand the quality of life issues for those of us with celiac disease. I feel like I have this "inside" perspective. In conclusion Someone asked me the other day "If you had a week to have whatever you want, what would you choose?" I surprised myself by saying "To eat regular food for one week. That would be my dream." She laughed. Then she realized that I was serious. Maybe I haven't come as far in my passages as I thought.

Celiac.com 06/13/2019 (originally published 07/12/2010) - Celiac disease, also known as celiac sprue or gluten-sensitive enteropathy, is a condition characterized by chronic malabsorption and damage to the small intestine mucosa when gluten is consumed. Once diagnosed with this disease, a person must adhere to a life-long diet free of gluten. Symptoms that may occur when a person with celiac disease ingests gluten include gastrointestinal discomfort such as pain, vomiting, bloating, diarrhea, inflammatory skin rashes, fatigue, hair loss, mouth sores, and loss of dental enamel. Long-term complications may include decreased bone density, infertility, and lymphoma of the small intestine (Ciclitira & Lamont, 2009). There is a documented association between celiac disease and other conditions such as type I diabetes (Gale, 2008); however more research is needed to understand the nature of these relationships. Sometimes even strictly adhering to a gluten-free diet may not eliminate all symptoms and prevent the long-term complications particularly for those with more severe cases or refractory celiac disease. Another unique aspect of celiac disease that warrants attention is that many patients are misdiagnosed or have gone through lengthy procedures to identify their illness (Kostopoulou, Walsh & Delaney, 2009). Epidemiological studies suggest that celiac disease occurs in approximately 0.5%-1.0% of the U.S. population, yet the disease continues to be under diagnosed. One explanation for the rate of undiagnosed cases is limited knowledge regarding the clinical presentation of celiac disease among primary care physicians (Kostopoulou et al., 2009). Celiac disease has a range of symptoms, which can vary dramatically, and silent cases with atypical symptoms that are not manifest in overt gastrointestinal symptoms may be overlooked. Awareness of celiac disease has dramatically increased over the past decade. This is likely because an increasing number of clinical studies have focused on improving the diagnostic tests and treatments for this disease. However, research has just recently begun to address the psychological and quality of life issues associated with having celiac disease. The purpose of this article is to provide some information on the psychological symptoms associated with celiac disease, the motivators of effective management of this disease, and strategies that may be useful in preventing the negative psychological consequences that are often associated with celiac disease. Psychological Symptoms Research has uncovered numerous psychological symptoms that accompany celiac disease, ranging from anxiety and depression to increased risk for eating disorders and schizophrenia (Leffler, Dennis, George, & Kelly, 2007). Other related conditions include decreased affect, known as alexthymia, and migraine headaches. Although one might assume that some of these psychological issues could accompany any chronic health condition and be explained by the stress and adjustment involved in managing a chronic disease, celiac disease presents unique mental health challenges. The nature of this disease interferes with the absorption of essential nutrients and amino acids necessary to maintain adequate levels of serotonin and puts one at risks to experience a “depressed” state characterized by malaise, fatigue and flattened mood. Indeed, there appear to be both physiological and psychological contributors to the mood changes associated with celiac disease. Some research suggests that gastrointestinal diseases such as celiac disease are correlated with certain personality traits/dispositions (George et al., 2009). Personality features, such as being anxious, interpersonally sensitive or prone to depression are often present prior to the diagnosis of celiac disease and may exacerbate the disease. Indeed, a person with celiac disease who struggles with stress and anxiety may allow these emotions to impede with consistent engagement in dietary adherence and exercise, both of which are important to live well with celiac disease. Clearly, it is critical to address the psychological issues associated with celiac disease. This can be done by including stress and anxiety reduction exercises and/or counseling as critical parts of the treatment of celiac disease. The extended time and diagnostic procedures often needed to arrive at an accurate diagnosis of celiac disease can also have a psychological toll on individuals with this disease. For instance, frustration, mistrust of doctors, feelings of powerlessness, hopelessness, and resistance to adhering to providers’ treatment recommendations are among possible reactions at some point during the celiac diagnosis process. In fact, stress and psychological diagnoses are sometimes given in the absence of a biological explanation for patients’ symptoms of celiac disease. It is not uncommon for patients to go through the stressful process of “doctor shopping” before they are accurately diagnosed with celiac disease. The importance of family support cannot be underestimated in the process of diagnosing and managing celiac disease. Research shows that having the support of one’s family and friends plays a large role in how well one manages their chronic illness (Dimatteo, 2004). In fact, one study found that consistent support from a loving, cohesive family can increase adherence to medical advice, such as to eat a healthy diet, nearly two-fold. These studies underscore the importance of informing one’s family of a celiac disease diagnosis and asking for their support in managing the disease, especially when first diagnosed (Gallant, 2003). Often times, family members may have little to no knowledge of a disease such as with celiac disease, and learning about the disease together can improve both your own control over it and the support you receive from your family. Navigating the process of learning about celiac disease and the gluten-free lifestyle together will help family members better understand the unique challenges of living with celiac disease. Motivators and Barriers Engaging in healthy eating, including eating gluten free foods, and engaging in regular moderate-to-intense physical activity are central to successful management of celiac disease. However, sustaining the occurrence of these behaviors over time requires motivation to engage in these behaviors and awareness of strategies for overcoming the barriers to the occurrence to these behaviors. Specific motivators for engaging in healthy eating by individuals with celiac disease include the following: (a) experiencing or being made aware of the severe symptoms that come with this disease as a result of unhealthy eating, (b) having family members and friends who buy and eat healthy foods, including gluten free foods (i.e., family and social support), (c) and being a part of a celiac disease advocacy group. It is also noteworthy that personal traits such as conscientiousness and valuing of health predict adherence to a gluten free diet (Edwards, Franko, Leftler, Dennis, & Blom-Hoffman, 2009). Additionally, there is research evidence that knowledge regarding a gluten free diet and being involved in a celiac disease advocacy group also predict adherence to a gluten free diet (Leffler, Edwards-George & Dennis et al., 2008). Specific motivators for engagement in routine moderate-to-intense physical activity by individuals with celiac disease include the following: (a) awareness that routine physical activity is a great way to reduce and prevent stress and stress related migraine headaches, (b) having a partner (child or adult family member or friend) with whom to engage in physical activity, and (c) participating in walking groups and dance classes in one’s community that are convenient. More research is needed to evidence the impact of routine physical activity on the symptoms of celiac disease, as the empirical findings from such research will likely serve as additional motivators for physical activity among individuals with celiac disease. Exercise could potentially offset the risk of fractures and decreased bone density associated with celiac disease. Health Self-Empowerment Theory Management of celiac disease requires that individuals with this disease feel empowered to do so under whatever conditions that exist in their lives (.e.g., without family or friend support ). According to Health Self-Empowerment (HSE) Theory engaging in health promoting behaviors such as those necessary to manage celiac disease requires motivation to engage in these behaviors, perceiving control in relation to these behaviors, self-praise of these behaviors when they occur, coping skills for effectively dealing with stress and depression that often result in unhealthy eating and not exercising, and having a sense of responsibility for one’s own health (Tucker, Butler, Loyuk, Desmond, & Surrency, 2009). Support groups and short-term counseling are ideal venues for promoting these HSE Theory variables. Psychologists who work in primary care centers are perfectly suited to provide this counseling; however, individuals living well with celiac disease are also ideally suited to lead such support groups. Below are some example strategies for applying HSE Theory to patients living with celiac disease: Identify an interdisciplinary health team that works collaboratively with the patient in managing the disease. Empower patients to learn about celiac disease so they are knowledgeable about their role in managing the disease. Involve the patient in reading and understanding lab, serology, and endoscopy results. Encourage involvement in support groups and activism related to celiac disease. Teach self-praise in response to healthy choices consistent with the gluten-free lifestyle. Teach coping skills and stress reduction, emphasize family support, and help the patient identify positive health influences. Tips from Dr. Carolyn Tucker It is important for individuals with celiac disease to prepare for their visit with their healthcare provider by preparing a list of psychological and physical symptoms, concerns, and questions before the visit to present to their provider at the beginning of the health care visit. It is also important to have a tape recorder or note-taker to write the answers provided by the health care provider. Critical to effective management of celiac disease is learning and using assertiveness skills, which are skills to respectfully but confidently ask for the health care behaviors and information desired from health care providers. It is also important to send a commendation note or letter to providers who provide desired health care, as such notes/letters motivate providers to sustain desired health care provision. It is critical that individuals with celiac disease avoid stress by saying “no” to what they do not want to do and learn to seek help when feeling overwhelmed. It is also important that individuals with celiac disease ask for the support from family and friends. It is helpful for individuals with celiac disease to manage their depression and stress by (a) talking about these problems with a trustworthy family member, friend, spiritual leader, or counselor/psychologist, (b) assessing what activities made them happy in the past and doing those activities, (c) learning to meditate, pray, and/or use muscular relaxation, and (d) forming supportive friendships with individuals who are living well with celiac disease. It is useful for individuals with celiac disease to take control of their health by engaging in health promoting behaviors and praising themselves for doing so. This requires giving priority to yourself so that you can be physically and psychologically able to express love to others. Note: Article co-authors: Carolyn M. Tucker, Ph.D., & Logan M. Pyle. Health Self-Empowerment Theory was developed by Dr. Carolyn Tucker at the University of Florida. References: Ciclitira, P. & Lamont, J. (2009). Management of Celiac Disease in Adults. Retrieved December 4, 2009, from Up To Date website: www.uptodate.com Edwards George, J.B., Franko, D. L., Leffler, D. A., Dennis, M.D., Kelly, C. P., & Blom-Hoffman, J. (2009). Psychological correlates of gluten-free diet adherence in adults with celiac disease. Journal of Clinical Gastroenterology, 43, 301-306. DiMatteo, Robin. (2004). Social support and patient adherence to medical treatment: A meta analysis. Health Psychology, 2(2), 207-218. Gale, K. (2008, December 10). Type 1 Diabetes and Celiac Disease Share Several Common Susceptibility Alleles. Retrieved December 4, 2009, from Reuters website: www.celiac.org Gallant, M. (2003). The influence of social support on chronic illness self-management: A review and directions for research. Health Education & Behavior, 30(2), 170-195. Leffler, D.A., Dennis, M., George, J.B., & Kelly, C.P. (2007) The interaction between eating disorders and celiac disease: An exploration of 10 cases. European Journal of Gastroenterology and Hepatology, 19(3), 251-255. Leffler, D.A., Edwards-George, J.B., Dennis, M., Schuppan, D., Cook, F., Franko, D.L., Blom Hoffman, J., & Kelly, C.P. (2008). Factors that influence adherence to a gluten-free diet in adults with celiac disease. Digestive Diseases and Sciences, 53(6), 1573-1581. Kostopoulou, O., Devereaux-Walsh, C. & Delaney, B.C. (2009). Missing celiac disease in family medicine: The importance of hypothesis generation. Medical Decision Making, 29(3), 282-90. Tucker, C.M., Butler, A.M., Loyuk, I.S., Desmond, F.F. & Surrency, S.L. (2009) Predictors of a health-promoting lifestyle and behaviors among low-income African American mothers and White mothers of chronically ill children. Journal of the National Medical Association, 101(2), 103-10. Tucker, C.M. & Rice, K.G., Hou, W., Kaye, L.B., Nolan, S.E., Flenar, D.J., Gonzales, L., Smith, M.B., & Desmond, F.F. (2010). Motivators of and Barriers to Health-Smart Behaviors Inventory (MB-HSBI). Manuscript submitted for publication.

Celiac.com 02/28/2017 - It's no secret that psychological symptoms can be associated with celiac disease, but until recently, no one had really done a solid prospective study on children. A research team has now done just that. In this case, they looked at a group of children with celiac disease autoimmunity (CDA), which is defined as persistently positive celiac disease–associated tissue transglutaminase autoantibodies (tTGA). As part of their study, the researchers looked at a screening population of genetically at-risk children. They assessed psychological functioning in children as reported by mothers, and then compared the results with a comparable group of children without celiac disease autoimmunity. They also investigated differences in psychological symptoms based on mothers' awareness of their child's celiac disease autoimmunity status. The research team included Laura B. Smith, Kristian F. Lynch, Kalle Kurppa, Sibylle Koletzko, Jeffrey Krischer, Edwin Liu, Suzanne Bennett Johnson, Daniel Agardh, and The TEDDY study group. The study, titled Environmental Determinants of Diabetes in the Young, followed 8,676 children to identify triggers of type 1 diabetes and celiac disease. Children were tested for tTGA beginning at 2 years of age. The researchers used the Achenbach Child Behavior Checklist to assess child psychological functioning at 3.5 and 4.5 years of age. At 3.5 years, 66 mothers who were not aware that their child had celiac disease autoimmunity reported more child anxiety and depression, aggressive behavior, and sleep problems than 3,651 mothers of children without celiac disease autoimmunity. Unaware-celiac disease autoimmunity mothers also reported more child anxiety and depression, withdrawn behavior, aggressive behavior, and sleep problems than 440 mothers aware of their child's celiac disease autoimmunity status. At 4.5 years, there were no differences. At 3½ years-old, children with persistently positive celiac disease–associated tTGA had substantially more reports of child depression and anxiety, aggressive behavior, and sleep problems by mothers who were not aware of their child's celiac disease autoimmunity status. Mothers with knowledge of their child's celiac disease autoimmunity status made fewer reports of psychological symptoms, which indicates that awareness of the child's tTGA test status makes mother's less likely to report symptoms. That the differences seem to disappear by age 4.5 is encouraging, but also puzzling. Why do they seem to disappear? What specifically causes them in the first place? This is the first study to date on this particular aspect of celiac disease and related conditions in children. It will likely not be the last. As we learn more from studies like this one, the ways we test for, monitor, and even treat celiac disease will likely improve. Source: Pediatrics, February 2017