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Celiac.com 03/27/2025 - Celiac disease is an autoimmune condition in which consuming gluten triggers an immune response that damages the small intestine. While the primary treatment is a strict gluten-free diet, many individuals with celiac disease continue to experience symptoms, even after eliminating gluten. In recent years, research has suggested that mental health conditions such as anxiety and depression may play a role in how well individuals manage their disease. A new study published in Journal of the Canadian Association of Gastroenterology examines how anxiety and depression affect adherence to a gluten-free diet, symptom severity, and overall quality of life in individuals diagnosed with celiac disease. Understanding the Study The study involved 673 adults diagnosed with celiac disease who attended a specialized celiac clinic over a four-year period. Each participant completed several assessments that measured their adherence to a gluten-free diet, quality of life, severity of symptoms, and mental health status. Anxiety and depression were identified using a standardized questionnaire, with individuals scoring above a certain threshold classified as experiencing these conditions. The goal was to determine the prevalence of anxiety and depression in individuals with celiac disease and evaluate how these mental health challenges impact dietary adherence, symptom severity, and overall well-being. Key Findings High Rates of Anxiety and Depression The study found that mental health issues were common among individuals with celiac disease: 37% of participants had anxiety 16% had depression These findings suggest that a significant portion of people with celiac disease struggle with emotional well-being, which may, in turn, affect their ability to manage their condition effectively. Impact on Gluten-Free Diet Adherence One of the most important findings was that individuals with anxiety or depression were less likely to adhere to a strict gluten-free diet. The study showed that: Those with anxiety were 30% less likely to follow the diet correctly. Those with depression were 50% less likely to maintain good dietary adherence. This suggests that emotional distress may make it harder for individuals to consistently avoid gluten, which can lead to ongoing symptoms and further health complications. More Severe Symptoms and Health Complications Participants who experienced anxiety and depression also reported worse physical symptoms related to celiac disease. They were more likely to suffer from: Abdominal pain Digestive discomfort Fatigue Brain fog In addition to these symptoms, individuals with anxiety and depression tended to experience weight fluctuations, though this trend was not statistically significant. Lower Quality of Life Quality of life was significantly lower in individuals who experienced mental health challenges. The study found that anxiety and depression were strong predictors of reduced life satisfaction, indicating that managing both physical and mental health is essential for improving overall well-being in people with celiac disease. Why This Study Matters Mental Health and Celiac Disease Management This research highlights that mental health is a crucial factor in managing celiac disease effectively. Individuals with untreated anxiety or depression may find it more difficult to follow a gluten-free diet, leading to persistent symptoms and increased health risks. Recognizing and addressing these mental health conditions can be an essential part of improving health outcomes for people with celiac disease. The Need for Psychological Support Given the strong connection between mental health and celiac disease management, healthcare providers should consider screening for anxiety and depression in individuals diagnosed with celiac disease. Providing access to mental health resources, such as therapy or counseling, could help patients cope with the emotional challenges of living with a chronic illness. Empowering Patients to Improve Their Well-Being For individuals with celiac disease, this study serves as a reminder that managing mental health is just as important as avoiding gluten. Seeking support from healthcare professionals, support groups, or mental health specialists can make a significant difference in improving dietary adherence, symptom management, and overall quality of life. Conclusion This study demonstrates that anxiety and depression are common in individuals with celiac disease and have a significant impact on their ability to maintain a gluten-free diet, control symptoms, and experience a good quality of life. By addressing mental health alongside dietary management, individuals with celiac disease may improve their overall health and well-being. Healthcare providers and patients alike should prioritize mental health as a key component of celiac disease care to achieve the best possible outcomes. Read more at: academic.oup.com

Celiac.com 03/21/2022 - Eating a gluten-free diet is the only current treatment for celiac disease, but managing that diet can be difficult. It can come with a substantial perceived treatment burden, and is tied to higher rates of psychopathology in adult patients. Some studies have identified psychological problems in children with celiac disease, but no systematic review has documented actual rates. However, it is still important to determine the risk for psychological comorbidities in children with celiac disease before they become adults. A team of researchers recently set out to review existing research on mental health issues in children with celiac disease, and to compile a psychosocial research and clinical agenda. The research team included Shayna Skelley Coburn, Elaine Leonard Puppa, and Samra Blanchard. They are variously affiliated with the Department of Gastroenterology, Children's National Health System; the George Washington University School of Medicine, Washington, DC; and the University of Maryland Medical Center, Baltimore, MD. The team researched a number of databases, including Scopus and PubMed, and followed up any relevant references to additional publication material. Two investigators screened studies for preset factors. They looked for electronically available peer-reviewed celiac studies, published in English, that included children. One investigator pulled the data, which the second investigator then reviewed. The team found twenty-six publications which met their criteria, including 16 case-control, 9 observational, and 1 clinical trial. Source materials differed in terms of symptoms examined, methodology, and population characteristics. A number of studies found that kids with celiac disease had an elevated risk for psychological comorbidities, along with poorer quality of life scores. However, a large number of studies were limited by small sample size, and inconsistent or non-validated methods of measuring psychological symptoms. Because numerous prior studies have shown increased rates of celiac disease coupled with psychological symptoms or diagnoses, the team stresses the need for screening for psychological issues in celiac patients, and also for celiac screening in psychological patients. Further study of the issue is also clearly warranted. By identifying the need for evidence-based recommendations for psychosocial research and practice in children with celiac disease, the team is setting the stage for better overall care and quality of life for people with celiac disease. Read more in Nutrients

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 05/03/2019 (Originally published 10/08/2010) - Through some intriguing recent studies, we are learning that celiac patients share some worrisome emotional experiences that will impact their quality of life. When I queried the ICOR Celiac listserv about how people there coped with celiac disease, I got reflections of many of my own experiences in navigating the illness before and after diagnosis. From the answers sent and the research I’ve done on the topic, I’ve found that the celiac patient must contend with three major types of challenges. The first issue is directly relevant to more than a third of the celiac population. According to a 2009 study published in the journal Movement Disorders, 35% of celiac patients report a history of depression, personality changes or even psychosis. Many members mentioned having difficulty getting doctors and family to take them seriously and the aggravation and demoralization after years of searching in vain for a correct diagnosis. These are particularly problematic for those of us who have gotten a dose of emotional dysfunction along with our somatic symptoms. Maggie C. of Portland, Maine eloquently spoke of the frustration she felt because of the long delay in her own diagnosis: “I went through a succession of doctors, all of whom had me pegged as a hypochondriac. So I got to thinking of all my symptoms as just symptoms of anxiety, anger, and depression. It didn’t help that I was ALSO truly anxious and depressed. Anyway, when I went GF, the anxiety, anger, and depression went away (I like to say: “Buddha ate rice!”). So did the physical symptoms. Now I still have people thinking (and saying) that I’m a hypochondriac because I’m “so picky” about foods, but I care less about what they think.” I’m glad that Maggie (I’m not using real names here) was able to triumph over so many obstacles in getting a diagnosis; she is almost heroic in summoning the pluck to pull herself together over and over again to face the possibility of yet another self-esteem battering in the examination room. Finally she was able to get the help she had been paying for all along. I worry about the more average patients in this situation who simply don’t have the tools and make-up to do the same. And although she has a valiantly healthy perspective on people in her life who aren’t supportive, it can be taxing to anyone to put up defenses against thoughtless behavior. I can imagine that it is difficult for the doctor ignorant of advances in celiac disease diagnostic protocol to discern a difference between a very sick patient searching frantically for help and a hypochondriac who searches for reasons to be perceived as ill. Indeed, I doubt there is any difference in how those two types of patients behave. I wish this issue could be addressed by the National Institutes of Health or the Center for Disease Control since although we don’t know how many people give up looking before they find out why they are sick, the lack of awareness among physicians still appears to be a significant barrier to diagnosis. Kathy, from California, who was lucky enough to be diagnosed after only 6 months, had this to say: “My pre-diagnosis symptoms were primarily emotional. Of course, I had some gut problems, and some breathing problems too, but they were nothing compared to how emotionally disturbed I felt—all rather suddenly. It was ten years ago (!), and my normally upbeat self began experiencing black depressions and bouts of uncontrolled weeping. I just couldn’t perk up, and was feeling awful, as though a dark cloud was hovering over me. Because I had no idea what was wrong, I assumed the worst, and my doctor suggested I try an SSRI for mood. Instinctively, I felt that that was not the solution, and that medication would not help. I was afraid to eat, and lost 15 pounds. This really scared me, and emotionally it compounded the weird experiences I was having…” The second situation I’d like to talk about begins at diagnosis. Once a patient had been lucky enough to find the answer to their deteriorating health, they are told that they must inform their families that each of them may also be vulnerable to developing celiac disease. I can’t count the number of people I’ve spoken to over my eight years as a celiac patient who have related very tense encounters with immediate family members who have reacted with everything from derision to hostility in response to this important news. And these encounters occur at a time when sympathy and support is needed most. Not only do they have a very difficult diet to follow and a sick and damaged body to heal, they have often been emotionally scarred just going down an often psychically brutal road to diagnosis. Colleen of Connecticut wrote: “Communicating the possibility of inherited celiac to my siblings and children was very painful. None of them wanted to hear about it. Denial is real. The best I could do was to give them the information and know that they were in charge of their own lives. Most painful of all was my Crohn’s diagnosed daughter being unwilling to do a gluten-free trial. After years, she did, and the diet has improved her flares greatly. I don’t know whether to be glad she is finally on the wagon, or sad that it took so long, putting her in greater long term danger.” Students of mythology will remember Cassandra who was given a gift by Apollo who was quite taken with her beauty. He gave her the ability to see the future. But when she didn’t return his affections, he added the curse that nobody would believe her predictions. When she foretold a great impending tragedy, everyone ignored her tearful pleading. Just like Cassandra, we celiac patients often feel an enormous responsibility to convince our immediate family of the importance of this disease. We are told to convey the information to our children, siblings and parents so that they will know what to look out for. We then feel badly on many levels when our good intentions are rejected. Not only do we feel unsupported and abandoned in the face of our efforts to treat an often devastating illness, we are thwarted in our quest to prevent our loved ones from facing the same fate. In addition, we are hurt when our character or credibility is called into question by the people we love. And sometimes the resulting rifts in the family are never healed, which brings me to the third aspect—the social complications that arise because of the diet. I heard from one woman that separation from some family members actually raised her quality of life. Indeed, one respondent who related that although the men who would date her in spite of her difficult diet belonged to a shrinking pool, she felt that it was a good litmus test for mate suitability. Unfortunately, the social pressures put on the celiac patient can decrease the commitment to dietary compliance. A celiac disease patient who consumes gluten has a much higher risk for certain cancers, heart disease, and of course, psychological illness, letting alone the potential devastation to her/his intestinal tract and the many other autoimmune consequences. A study done of 70 Indian school children showed that 18% were non-compliant with the gluten-free diet. From the study: “Dietary restrictions have impact on child’s social activities and thus psychosocial parameters (PSC score) are better in the dietary compliant group.” In other words, kids who have better support for their diet are more compliant than those who are lacking in social support. It’s easy to see how this might apply to adults as well, especially those in care facilities where they have little to say about their food choices. Maggie, who is able to dine out, offered an excellent strategy for dealing with restaurant staff: “The key in restaurants to maintain control of the Q and A. That requires a pro-active state of mind. My shorthand: ‘X and X are probably absolutely fine, but anything, anything at all, that comes in a bottle, can or packet is suspect.’ Any half-way decent chef is happy to cooperate. When the server comes back and recites said list, I am very positive and cheerful as we check off each okay item. If something’s not okay, I just say “oops! oh well. Thanks so much for checking.” and on to the next possibility. The goal is to convey a sense that this gf stuff is really, really easy given just the littlest bit of help. Freak ‘em out with worry, and you’ll wind up with nothing but a plate of steamed vegetables.” Maggie also sets a great example when invited to a friend’s home: “When people invite me to dinner, I accept with pleasure then say they may want to rethink it when they hear how much trouble I am. This gives me a chance to assess their kitchen expertise and make my own decision about whether to push hard for meeting in a restaurant or to insist (ever so nicely) upon bringing my own food.” Others, including me, feel they are too sensitive to risk restaurant food and just order a drink or bring bottled water. Invariably, tension arises when people who are eating express discomfort when you can’t dine with them. Often, invitations decrease over time and the entire burden of social interaction must fall on the patient. Either the patient entertains, or invites others to outside events, or becomes more and more excluded. Answering my question about social invitations, one woman noted that when she wants company, it is necessary for her to do all the entertaining, and that invitations are rarely reciprocated. There is real a need to address issues of social support for celiac disease patients. We know that celiac disease is an autoimmune disorder that, because of its psychological manifestations, leaves patients especially vulnerable to social stress. And stress, of course, has a very negative impact on autoimmune patients in general. One last issue I’d like to touch on before putting this article to bed is some recent findings concerning cognitive decline in celiac patients. A study in October of 2006 published in the Archives of Neurology shows a link between dementia onset and celiac disease. Says Joseph Murray, M.D., a Mayo Clinic gastroenterologist investigator of the study, “There has been a fair amount written before about celiac disease and neurological issues like peripheral neuropathy (nerve problems causing numbness or pain) or balance problems, but this degree of brain problem—the cognitive decline we’ve found here—has not been recognized before. I was not expecting there would be so many celiac disease patients with cognitive decline.” Again, the unsinkable Maggie relates a story that is much like my own: “I was quite sick, though I didn’t know it, when I was diagnosed (biopsy, 1996). The cognitive changes were the most consequential and scary. I simply could not hold thoughts together, couldn’t reason my way through work-related problems. Had I forgotten how to do what I do? It couldn’t be...but it seemed to be. In a matter of months I went from being a model of success, in the office where I was working then, to being a failure. Having no idea why I simply couldn’t pull it together, I figured my problem was psychological: I had no respect for the executive. I stalled and covered and tried to buy time. No luck. I spent more time in the bathroom than normal, but not so much that I thought anything serious was going on. In fact I was pretty happy to have a few moments to myself and away from the pressure to do something I seemed unable to do. Ultimately and justifiably, they fired me. That was the last big project, in a free-lance business, for which I was hired…but (a big) consequence was the damage to my reputation.” Those of us who have experienced dementia in our parents and other close relatives know that the slow destruction of the brain can create paranoia, severe anxiety, depression and aggressive behavior. Dr. Murray suspects that in CD, a direct antibody attack on the brain is responsible for the dementia and other neurological manifestations of celiac patients, although it is likely a complex etiology. If the disease can cause numbness, balance disorders, migraines and problems walking, it shouldn’t surprise anyone that cognition could be similarly impacted. Kit Kellison and her husband own a rock venue in St. Louis, Missouri. She enjoys playing guitar, photographic portraiture, designing show posters and is working on her first novel. Sources: ICOR Listserv Celiac Disease Increases Risk of Neurological and Psychiatric Disorders: .  Mov Disord.  2009;24:2358-2362. Assessment of dietary compliance to Gluten Free Diet and psychosocial problems in Indian children with celiac disease Indian - Journal of Pediatrics Volume 77, Number 6, 649-654, DOI: 10.1007/s12098-010-0092-3 Cognitive impairment and celiac disease. Hu WT, Murray JA, Greenaway MC, Parisi JE, Josephs KA. Arch Neurol. 2006 Oct;63(10):1440-6

Celiac.com 10/28/2015 - A team of researchers recently set out to review the medical literature for psychological morbidity associated with celiac disease. The team included F. Zingone, G.L. Swift, T.R. Card, D.S. Sanders, J.F. Ludvigsson, and J.C. Bai. They are variously associated with the University of Salerno, Department of Medicine and Surgery in Salerno, Italy, the Department of Gastroenterology at University Hospital Llandough in Cardiff, Wales, UK, the Division of Epidemiology and Public Health at The University of Nottingham in Nottingham City Hospital, Nottingham, UK, the Department of Gastroenterology, Royal Hallamshire Hospital & the University of Sheffield, UK, the Department of Pediatrics at Örebro University Hospital in Örebro, Sweden, the Department of Medical Epidemiology and Biostatistics at Karolinska Institutet in Stockholm, Sweden, the Department of Medicine, "C. Bonorino Udaondo" Gastroenterology Hospital, Universidad del Salvador in Buenos Aires, Argentina. For their study, the team searched PubMed for all papers on psychological aspects of celiac disease, specifically quality of life, anxiety, depression and fatigue, published between 1900 and June, 2014. Their results showed that anxiety, depression and fatigue are common complaints in patients with untreated celiac disease and contribute significantly to lower quality of life. While aspects of these conditions may improve within a few months after starting a gluten-free diet, some patients continue to suffer from significant psychological morbidity. These psychological symptoms may have an impact on the quality of life and the dietary adherence for people with celiac disease. The team encourages health care professionals to keep in mind any associated psychological burdens when treating patients with celiac disease. Source: United European Gastroenterol J. 2015 Apr;3(2):136-45. doi: 10.1177/2050640614560786.

Celiac.com 12/15/2010 - A small study in Swedish children has found no association between early childhood psychological stress and later development of celiac disease. Previous studies have shown links between psychological stress and a number immunological diseases, such as inflammatory bowel disease. A team of researchers sought to look more closely at the connection between psychological stress in families and biopsy-proven celiac disease in children. The team included Karl Mårild, Anneli Sepa Frostell, and Jonas F. Ludvigsson. Their measure of psychological stress included factors such as serious life events, parenting stress, and parental worries. Using a questionnaire data from the ABIS study (All Babies In southeast Sweden), the team collected data on 11,000 children at one-year, and on 8,800 at two-years old. They confirmed celiac disease though observing of villous atrophy in small intestinal biopsy, and confirmed the diagnosis through patient chart data. Their data showed that no association between future celiac disease and a serious life event in the family in the child's first 1 or 2.5 years after childbirth (Odds Ratio (OR) = 0.45; 95% Confidence Interval (CI) = 0.01–2.65; P = 0.72; and OR = 1.21; 95% CI = 0.43–3.05; P = 0.64, respectively). They also found no association between celiac disease and parenting stress at age 1 year and at 2.5 years (OR = 0.40; 95% CI = 0.01–2.38; P = 0.73 and OR = 0.74; 95% CI = 0.01–4.56; P = 1.00, respectively). No children exposed to parental worries at 2.5 years were diagnosed with celiac disease before end of follow-up, compared to 25 diagnosed out of 8082 children not exposed to parental worry (OR = 0.00; 95% CI = 0.00–2.34; P = 0.64). Nor was there any associations between the combined measures of stress and celiac disease. This particular study found no association between celiac disease in Swedish children and psychological stress early in life. However, a wider and more statistically robust study is needed to entirely rule out any possible associations between early psychological stresses in children and later development of celiac disease. Source: BMC Gastroenterology. 2010;10(106)