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Celiac.com 01/15/2025 - Celiac disease is a complex autoimmune disorder that requires strict lifelong adherence to a gluten-free diet for effective management. This diet, while essential for recovery and symptom relief, poses several nutritional and psychological challenges. A deeper understanding of these challenges helps highlight the need for a comprehensive approach to supporting individuals with celiac disease. The Importance of a Gluten-Free Diet The gluten-free diet is the cornerstone of treatment for individuals with celiac disease. When people with celiac disease consume gluten, their immune system attacks the lining of the small intestine, causing damage to the villi, which are essential for nutrient absorption. Over time, this leads to significant health problems, including malabsorption of nutrients such as calcium, vitamin D, iron, and folic acid. Left untreated, this can result in conditions such as osteoporosis, anemia, and neurological issues. Adopting a gluten-free diet is highly effective in reducing symptoms, healing the intestinal lining, and preventing long-term complications. Many patients report significant improvements in gastrointestinal symptoms such as diarrhea, abdominal pain, and bloating after transitioning to the diet. However, even strict adherence to the diet does not guarantee complete recovery for all individuals, with older adults often experiencing slower or incomplete healing. Nutritional Deficiencies in a Gluten-Free Diet Although the gluten-free diet resolves many symptoms of celiac disease, it is associated with a range of nutritional deficiencies due to the exclusion of common grains like wheat, barley, and rye. Macronutrient Imbalances Fats: Gluten-free processed foods are often higher in total fats and saturated fats than their gluten-containing counterparts. This imbalance increases the risk of cardiovascular disease and metabolic disorders in celiac patients. Carbohydrates: Many gluten-free products rely on high-glycemic-index ingredients, leading to an overconsumption of simple sugars and a reduction in complex carbohydrates. This dietary pattern is linked to insulin resistance and an increased risk of diabetes. Fiber: Low fiber intake is a common issue among those on a gluten-free diet, as many gluten-free products lack whole grains. Insufficient fiber can lead to gastrointestinal discomfort, constipation, and long-term digestive issues. Proteins: While most individuals on a gluten-free diet consume adequate protein, the primary sources are often animal-based, which may not provide the balance of nutrients found in plant-based alternatives. Micronutrient Deficiencies Iron: Iron deficiency is prevalent in untreated and newly diagnosed celiac patients. Although levels improve with intestinal healing, iron-rich foods or supplements are often necessary to prevent anemia, especially in women. Calcium and Vitamin D: These nutrients are critical for bone health but are often deficient in individuals with celiac disease. Supplementation and dietary planning are essential to prevent osteoporosis. B Vitamins: Low levels of folate and vitamin B12 are common and can contribute to elevated homocysteine levels, which increase the risk of cardiovascular complications. Supplementation can help address these deficiencies. Other Minerals: Zinc, magnesium, and selenium deficiencies are frequently observed. Gluten-free processed foods often lack these essential minerals, making supplementation or diet adjustments necessary. Psychological and Social Challenges Maintaining a gluten-free diet significantly impacts social and psychological well-being. The need for strict dietary adherence can lead to feelings of isolation, anxiety, and depression. Individuals often experience difficulties dining out or participating in social gatherings due to concerns about cross-contamination or the unavailability of gluten-free options. This can result in avoidance of social activities and a sense of exclusion. In some cases, these challenges affect adherence to the diet, as individuals may intentionally consume gluten-containing foods to feel socially included. However, this behavior risks worsening symptoms and increasing the likelihood of severe complications. Support systems, education, and counseling can play a crucial role in helping individuals navigate these challenges and maintain their quality of life. The Role of Monitoring and Supplements Managing celiac disease goes beyond eliminating gluten from the diet. Regular monitoring of nutritional status is vital to identify and address deficiencies early. Blood tests can help track levels of critical nutrients, such as iron, calcium, vitamin D, and folate, enabling timely interventions. Nutritional counseling and education are essential components of care for celiac patients. Healthcare providers can guide patients in incorporating naturally gluten-free, nutrient-rich foods like fruits, vegetables, lean proteins, and pseudo-cereals such as quinoa and amaranth. Supplements may also be recommended, particularly during the initial years of dietary transition, to ensure adequate intake of critical nutrients. Why This Study Matters for Celiac Disease Patients This research underscores the multifaceted challenges faced by individuals with celiac disease in managing their condition. While the gluten-free diet is an effective treatment, it is not without its limitations. Nutritional deficiencies and psychological struggles are common, highlighting the need for a more comprehensive approach to care. For individuals with celiac disease, this study emphasizes the importance of regular nutritional assessments, balanced meal planning, and support systems to maintain both physical and mental health. By addressing these challenges, healthcare providers and patients can work together to improve quality of life and long-term outcomes for those living with this condition. Read more at: cureus.com Watch the video version of this article:

Celiac.com 02/08/2024 - Living with celiac disease often means navigating a complex landscape of symptoms, dietary restrictions, and the quest for an optimal quality of life. Understanding Patterns Behind Persistent Celiac Symptoms Celiac disease is not a one-size-fits-all condition. A subgroup of adults experiences persistent symptoms, both gastrointestinal and extraintestinal, the origins of which are often elusive. A team of researchers recently conducted an observational study to uncover patterns within this diverse symptom landscape and explore their connections to gluten-free diet adherence, mental health, and quality of life. The research team included Cara Dochat, Niloofar Afari, Rose-Marie Satherley, Shayna Coburn & Julia F. McBeth. They are variously affiliated with San Diego State University/University of California San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA; the VA San Diego Healthcare System, San Diego, CA, USA; the University of California San Diego, La Jolla, CA, USA; the Department of Psychological Interventions, University of Surrey, Guildford, UK; the Children’s National Health System, Washington, DC, USA; the George Washington University School of Medicine & Health Sciences, Washington, DC, USA; and the Celiac Disease Foundation, Woodland Hills, CA, USA. The Study in Focus Their study included 523 U.S. adults with self-reported, biopsy-confirmed celiac disease. Participants voluntarily completed a set of questionnaires addressing various aspects of their condition: Celiac Symptoms Index (CSI): Capturing physical symptoms and subjective health. Celiac Dietary Adherence Test: Assessing adherence to a gluten-free diet. PROMIS-29, SF-36, and Celiac Disease Quality of Life Survey: Exploring psychiatric symptoms and quality of life. Latent profile analysis identified four distinct symptom profiles: Little to No Symptoms (37%): Individuals in this profile reported excellent subjective health and minimal symptoms. Infrequent Symptoms (33%): Experience relatively moderate symptoms with a focus on extraintestinal symptoms. Occasional Symptoms (24%): Moderate symptoms, particularly gastrointestinal, physical pain, and fair to poor subjective health. Frequent to Constant Symptoms (6%): Enduring significant symptoms and fair to poor subjective health. Beyond Symptoms: The Mental Health and Quality of Life Equation Interestingly, profiles did not significantly differ in terms of clinical characteristics, gluten-free diet adherence, or overall quality of life. However, distinctions emerged in mental health dimensions. Profiles 2 and 3 reported moderate symptomology, with Profile 2 leaning toward more extraintestinal symptoms and Profile 3 showing a dominance of gastrointestinal symptoms, physical pain, and lower subjective health. Profile 3, despite its moderate symptom burden, surprisingly reported the lowest psychiatric symptoms and the highest quality of life on standardized measures. Implications and Future Directions The study’s findings underscore the complexity of celiac disease, emphasizing that a one-size-fits-all approach may not be effective. Notably, even lower symptom burden did not always correlate with better mental health and quality of life, suggesting a need for nuanced behavioral interventions. The lack of profile differences in gluten-free diet adherence implies the necessity for additional dietary or medical assessments and interventions. As we navigate the intricate terrain of celiac disease, personalized and comprehensive care emerges as a key consideration, addressing not only symptoms but also the broader aspects of mental health and overall well-being. Read more in BMC Gastroenterology volume 24, Article number: 9 (2024)

Celiac.com 01/21/2023 - Celiac disease is a chronic autoimmune disorder that occurs in genetically predisposed individuals, causing damage to the small intestine when gluten is consumed. The only treatment option currently available is a strict, long-term gluten-free diet, which can be restrictive, socially limiting, and costly. In a recent study, researchers aimed to identify the factors associated with a better quality of life in a large group of French celiac disease patients. The study, conducted between January and March 2016, surveyed celiac disease patients who were 15 years or older and self-reported as having an official diagnosis of celiac disease. Information about the study along with a link to an online questionnaire were sent via email to the members of the French Association of Gluten Intolerant People (AFDIAG). The online questionnaire included both demographic and clinical data, the French version of the “Celiac Disease Questionnaire” (F-celiac diseaseQ), along with information on gluten-free purchasing and consumption habits. The results of the study showed that out of the 4,000 patients who were contacted, 907 (23%) or them responded to the questionnaire, and 787 (20%) of them were included in the final analysis. The population included was predominantly female (81%) with a median age of 49 years old. The median age at the time of celiac disease diagnosis was 38 years, and the median duration of those who were on a gluten-free diet was 10 years. Seventy-one percent of the patients had a self-assessed dietary compliance rating of more than 8/10 over the prior six months. The dimensions with the best results on the F-celiac diseaseQ questionnaire were “Social” and “Gastrointestinal Symptoms”, while the dimensions with the worst results were “Emotions” and “Worries”. The study found that the duration of and compliance with a gluten-free diet are major factors that influence the quality of life of patients with celiac disease. These findings have important implications for healthcare providers as they suggest that by taking into consideration the restrictive aspects of the gluten-free diet and working to improve adherence, the management of celiac disease can be improved. Additionally, the study also found that the frequency of follow-up visits was not associated with better compliance or better quality of life, which could be useful for healthcare providers in terms of resource allocation. Overall, this study highlights the importance of considering quality of life in the management of celiac disease and the need for further research in this area. Read more at mdpi.com

Celiac.com 06/07/2021 - Numerous adults with celiac disease experience social anxiety, which detracts from their quality of life, eating patterns and ability to socialize and date. In a recent survey, most people with celiac disease said that it had a major or moderate negative impact on their dating life. The survey included questions on celiac disease-specific dating attitudes, behaviors and preferences, a social anxiety questionnaire, a celiac disease-specific quality of life instrument and a celiac disease food attitudes and behaviors scale. Anne R. Lee, EdD, RDN, LD, Jessica Lebovitz, RD, CDN, CNSC, both from the celiac Disease Center at Columbia University Irving Medical Center, led a team that send an email survey to nearly 14,000 affiliates of the institution. They received 538 fully completed the surveys from people who met the inclusion criteria, which was inclusion criteria was: 18 years of age or older, self-reported biopsy-proven celiac disease and following a gluten-free diet. They found that the negative effects of celiac disease were in people 23 to 35 years of age group, who reported substantially lower quality of life scores and higher social anxiety scores than those over 65 years of age. Nearly half of respondents reported that their celiac disease made them anxious about dating, while nearly 40% were hesitant to kiss due to their celiac disease. Overall, nearly 70% of respondents said celiac disease had a major/moderate impact on their dating life. The effects were more pronounced on those with less income. Those who reported a major/moderate impact, compared with those with no major impact, were more likely to have an annual household income under $50,000, were nearly five times more hesitant to go on dates because of celiac disease, and had lower celiac disease quality of life scores. Nearly 40% reported being uncomfortable explaining their dietary precaution to waiters, while on dates. Nearly on in three engaged in riskier eating behaviors, and one in twelve purposely consumed gluten. According to researchers, nearly 50% of women, and 15% of men were hesitant to kiss their dates, because of celiac disease. Those who were hesitant to kiss their dates had higher social anxiety questionnaire scores, and higher celiac disease-food attitudes and behavior scale scores than non-hesitant participants. Overall, about one out of five respondents said that celiac disease made the dating experience unenjoyable, overall. What's your experience with dating and celiac disease? Do you take special precautions? Do you get anxious? Share your story below. Read more in Healio.com

Celiac.com 11/15/2021 - For people with celiac disease, managing a strict gluten-free diet can be challenging, even in the best of circumstances. The process can be confusing, frustrating, embarrassing and depressing. For many, especially young people, trying to navigate and manage a gluten-free diet can lead to impaired psychosocial well-being, a diminished quality of life and disordered eating. We know, for example, that children and adolescents with celiac disease, and non-celiac gluten sensitivity, face extra challenges with academic or emotional well-being, and may be at higher risk for disordered eating. Adolescents can also suffer stress when trying to manage a gluten-free diet. A team of researchers recently set out to understand adolescents’ approaches to managing a gluten-free diet and the association with quality of life. Here's what they found. Using the Celiac Dietary Adherence Test and quality of life survey, researchers tested and surveyed a group of thirty adolescents with celiac disease, who ranged from 13–17 years old, and had been following a gluten-free diet for at least 1 year. To explore the teens' approaches to gluten-free diet management, the researchers used a semi-structured interview that focused on developing key themes using an iterative process, and classified their management strategies and quality of life using psychosocial rubric. They then compared Celiac Dietary Adherence Test ratings across groups. Using a four point scale, the team classified the gluten-free diet strategies that drive adaptive eating behaviors. They characterized behaviors by: greater flexibility (as opposed to rigidity); trust (as opposed to avoidance); confidence (as opposed to controlling behavior) and awareness (as opposed to preoccupation). More than half of those surveyed reported using maladaptive approaches to manage their gluten-free diet. Patients using maladaptive approaches to manage their gluten-free diets were more likely to be older, with lower celiac-specific Pediatric Quality of Life scores. Scoring differences between the groups ranged from 15.0 points for Isolation to 23.4 points for Limitations. Adolescents with celiac disease, who manage a gluten-free diet using maladaptive eating behaviors that are similar to feeding and eating disorders, report lower quality of life. Teens with lower QOL scores in areas like school or emotional function might require interventions, including a Section 504 plan or meeting with a psychologist or social worker. To reduce this risk, the team recommends that adolescents with celiac disease receive regular follow-up visits with gastroenterologists and dietitians, along with psychosocial support, as needed. Parents of adolescents with celiac disease should also talk with, and listen to their celiac teens about the dietary pressures and difficulties facing them on a daily basis. Making sure that adolescents with celiac disease learn to use healthy strategies to properly manage their gluten-free diet will help to ensure that future generations of celiac sufferers have a smoother path and a better quality of life. Remember, when our teens thrive, we all win! Read more in the Journal of Human Nutrition and Dietetics The research team included J. W. Cadenhead, R. L. Wolf, B. Lebwohl, A. R. Lee, P. Zybert, N. R. Reilly, J. Schebendach, R. Satherley, and P. H. R. Green. They are variously affiliated with the Department of Health and Behavior Studies, Program in Nutrition, Teachers College, Columbia University in New York, NY; the Department of Medicine, Celiac Disease Center, Columbia University Medical Center, Harkness Pavilion, New York, NY, USA; the Department of Psychiatry, Columbia University Medical Center, New York, NY, USA; and the Faculty of Life Sciences and Medicine, School of Population Health & Environmental Sciences, King's College London in London, UK.

Celiac.com 02/07/2022 - A team of researchers recently set out to assess the effects of a group-based education program on gastrointestinal (GI) symptoms and quality of life (QOL) in patients with celiac disease. The research team included Zahra Akbari Namvar, Reza Mahdavi, Masood Shirmohammadi, and Zeinab Nikniaz. They are variously affiliated with the Department of Clinical Sciences, Paediatrics, Umea University, Umea, Sweden; the Department of Epidemiology and Global Health, Umea University, Umea, Sweden; the Department of Clinical Sciences, Paediatrics, Lund University, Lund, Sweden; the Department of Clinical and Experimental Medicine, Paediatrics, Linköping University, Linkoping, Östergötland, Sweden; and the Department of Public Health and Clinical Medicine, Family Medicine, Umea University, Umea, Sweden. For their study, the team looked at 130 patients with celiac disease who had followed a gluten-free diet for at least 3 months. Sixty-six patients were randomly assigned to receive group-based education for three months, while sixty-four received routine education in the celiac clinic for the same period of time. To assess gastrointestinal symptoms and quality of life, the team used the gastrointestinal symptom rating scale (GSRS) questionnaire and SF-36 questionnaire at baseline and 3 months after interventions. The mean age of the participants was about 37.5 years. Baseline values were similar for both groups. Data taken three months after the study showed better total GSRS score in the group education cohort compared with the regular education group 3 months post-intervention, while the groups also showed significant differences in mean SF-36 scores. Results showed that group-based education helps celiac patients to improve gastrointestinal symptoms and quality of life. Read more in BMC Gastroenterology volume 22, Article number: 18 (2022)

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 11/02/2020 - Many people with celiac disease experience persistent symptoms despite adhering to the gluten-free diet. Different studies have assessed the use of probiotics as an adjuvant treatment for celiac disease. A team of researchers recently set out to to evaluate the efficacy of probiotics in improving gastrointestinal (GI) symptoms and quality of life (QOL) in patients with celiac disease, and used EMBASE, MEDLINE, CINAHL, Web of Science, CENTRAL, and DARE databases to search for randomized controlled trials (RCTs) evaluating probiotics compared with placebo for treating celiac disease, before February 2019. The researchers collected data on GI symptoms, QOL, adverse events, serum tumor necrosis factor-α, intestinal permeability, and microbiota composition. After examining 2,831 records, they found seven articles describing 6 RCTs, totaling 5,279 participants, that met their eligibility criteria for quantitative analysis. Probiotic use increased Bifidobacteria an average of 0.85 log colony-forming units (CFU) per gram. When measured by the GI Symptoms Rating Scale, which measures average difference symptom reduction, probiotics reduced GI symptoms. However, there was no difference in GI symptoms after probiotics when different questionnaires were pooled. There was just not enough data on tumor necrosis factor-a levels or QOL for probiotics compared with placebo. Meanwhile, the team saw no difference in adverse events between probiotics and placebo. Because the overall certainty of the evidence ranged from very low to low, the best the team can say is that probiotics MAY be helpful to celiac patients. The team is calling for high-quality clinical trials to increase the certainty of the data in this matter. Do you have celiac disease, and take probitiotics to help your gut health? Do they help? Share your experience in our comments section. Read more in Am J Gastroenterol. 2020 Oct;115(10):1584-1595. The research team included Caroline L Seiler, Michel Kiflen, Juan Pablo Stefanolo, Julio César Bai, Premysl Bercik, Ciaran P Kelly, Elena F Verdu, Paul Moayyedi, Maria Ines Pinto-Sanchez. They are variously affiliated with the Department of Medicine, Farncombe Digestive Health Research Institute, McMaster University, Hamilton, Ontario, Canada; the Population Health Research Institute, Genetic and Molecular Epidemiology Laboratory, Hamilton, Ontario, Canada; the Hospital de Gastroenterologia Dr C B Udaondo, Buenos Aires, Argentina; and the Celiac Center Beth Israel Deaconess Medical Center and Celiac Research Program, Harvard Medical School, Boston, Massachusetts, USA.

Celiac.com 08/06/2020 - The global pandemic of Covid, caused by coronavirus SARS-CoV2, has caused serious damage to public health and the economy. However, some of the greatest effects may be mental and emotional. Pandemic response measures have necessitated restrictions on medical visits and treatments for non-Covid conditions. The results could include lack of regular follow-up care, or the delay in consulting a doctor about ongoing symptoms, all of which can degrade a patient's quality of life. Researchers just don't know much about how the lockdown is affecting the quality of life in patients with chronic diseases, like celiac disease, and Functional Gastrointestinal Disorders (FGDIs), especially in kids. The cause of FGIDs remains unknown, though most researchers favor a biopsychosocial explanation, in which biological and psychosocial processes drive the development of FGIDs. A team of researchers recently set out to try to get an idea of the influence of the Covid pandemic on the mental health and wellbeing of patients, especially kids, with chronic diseases. The research team included Francesca Fiori Nastro; Carlo Tolone; Maria Rosaria Serra; Daniela Pacella; Angelo Campanozzi; and Caterina Strisciuglio. They are variously affiliated with the University of Naples Federico II, Department of Pediatrics, Naples, Italy; the University of Campania ``Luigi Vanvitelli,'' Department of Woman, Child and General Specialistic Surgery, Naples, Italy; the University of Naples Federico II, Department of Public Health, Naples, Italy; and the University of Foggia, Department of Medical and Surgical sciences, Italy. A number of studies have shown that children with celiac disease, even on a gluten-free diet, have a higher risk for functional abdominal pain disorders, so there was some concern about how those kids might fare during Covid lockdown. For their study, the research team assessed gastrointestinal symptoms in celiac patients at the time of the diagnosis (T0), and rates of reported FGIDs after six months (T1) of gluten-free diet. They also compared rates of FGIDs between T1 and during the lockdown for COVID-19 (T2). Data supports the idea that psychological factors, such as stress or anxiety, may play a role in the development of FGDIs. The team conducted an observational study on 71 children, aged 1 to 18 years, with clinically diagnosed celiac disease. The team also prospectively followed a group of gluten-free celiac children from the time of their diagnosis, between January 2018 and March 2019, through the study. During the Covid lockdown, the team interviewed patients by phone. Patients or their parents then completed the Rome IV, Peds QL 4.0 General Well-Being Scale and Promis anxiety surveys. At T2, during the lockdown for COVID-19, the team found reduced rates of all FGIDs, compared to T1. They also found less constipation, and a decrease in post prandial distress syndrome. The median total score of the General Well-being scale was 80.13 showing good patient quality of life, in general. More than seventy percent of patients showed no anxiety, according to the Promis anxiety questionnaires. The researchers theorize that the improvement in symptoms, wellbeing and social functioning, may result from reduced exposure to stressful events, such as school, coupled with an increased parental closeness. The study results did show that a large number of children with gastrointestinal symptoms at the time of celiac diagnosis went on to develop FGIDs when they follow a gluten-free diet. The researchers suspect that this may be due to low grade inflammation, even with negative tests for serum tissue transglutaminase IGA antibody. They suspect that these levels may fall after a year on a gluten-free diet, as reflected in the decreased frequency of FGIDs observed after one year of GFD, compared to six months. Even though this is a small study, it's a rigorous one, with solid data. Italy has been hard hit by the Covid pandemic, and even a bit of good news about kids with celiac disease seeing some overall improvements in quality of life under Covid lockdown is welcome news. Hopefully our celiac children here in the U.S. are seeing similarly improvements under the Covid lockdown. Read more at: dldjournalonline.com

Celiac.com 02/03/2020 - Celiac disease is a common autoimmune condition that can have negative physical and psycho-social consequences in kids with the disease. A team of researchers recently set out to document health-related quality of life (HRQOL) in a large group of children with newly diagnosed celiac disease using the PedsQL 4.0 Generic Core Scales. They wanted to compare it against data for healthy children and children with non-celiac gastrointestinal (GI) problems using established data. The research team included Mary Shull; Tracy Ediger; Ivor Hill; and Rose Schroedl. They are variously affiliated with the Department of Gastroenterology, Hepatology, and Nutrition; the Department of Pediatric Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH; and the Gastroenterology, Hepatology and Nutrition Section, Children's Hospital Colorado, Aurora, CO. The team presented the PedsOL survey to 159 children with newly diagnosed celiac disease, and their parents, at either the time of diagnostic duodenoscopy, or prior to their first dietitian appointment for gluten-free diet instruction. The team calculated average parent-report and self-report PedsQL summary and sub-scale scores, then used 1-sample tests to compare to documented averages from a group of healthy children, and a group of children with non-celiac gastrointestinal symptoms. Compared to the healthy kids, those newly diagnosed celiac disease had lower Total Scores, Physical Health, Psycho-social Health, Emotional Functioning, and School Functioning on parent report with similar findings on self-report. Among kids and adolescents with celiac disease, the team found clinically significant scores in nearly 56% for School Functioning, nearly 63% for Physical Health, about 54% for Emotional Functioning, nearly 44% for Social Functioning, and 49% for Total Score. Quality of life scores were lower for kids and adolescents with newly diagnosed celiac disease than for healthy children, and more in line with QOL for patients with non-celiac GI conditions. The team points out that kids with lower QOL scores in areas like school or emotional function might be helped with early interventions, including a Section 504 plan or meeting with a psychologist or social worker. Children and adolescents with celiac disease, and non-celiac gluten sensitivity, face extra challenges with academic or emotional well-being. Catching those extra alleges early can help those kids to get the help they need to thrive. Read more in the Journal of Pediatric Gastroenterology and Nutrition

Celiac.com 01/09/2020 - Research indicates that having additional medical conditions is associated with a lower quality of life. One study looked at the combined influence of having a chronic disease and their perceived quality of life and wanted to see if it had an impact on suicide-related ideations or suicide attempts. Depression was clearly linked to both. The people who had a lower quality of life had more suicide-related ideation and suicidal attempts than those with a higher quality of life. With the strong association between people with celiac disease and depression, we need to have plenty of tools at hand to support this at-risk population. Intervention techniques, prevention methods, and treatment strategies should be considered for anyone with celiac, even if you do not currently have a diagnosis of depression. There Are Several Factors That May Feed Into Suicide Statistics Hypoperfusion - There is a strong gut-brain connection. People diagnosed with celiac already have villous atrophy in their gut. 73% of people with a sensitivity to wheat have hypoperfusion, a lack of blood flow to the brain. This can be caused by any food sensitivity. Low Levels of Neurotransmitters - Neurotransmitters like dopamine and serotonin are produced in the gut. A lack of both of these feel good chemicals is associated with depression and anxiety. In fact, 90% of your serotonin levels reside in the gut where it also serves the critical role of helping to stimulate contractions that push food through your intestines. Dysbiosis - Dysbiosis has been linked to major mood disorders. A gluten-free diet starves your body of some much needed nutrients. Nearly 80% of the prebiotics in our diets comes from wheat! These prebiotics are fuel for the probiotics that reside in your gut microbiome. When you take away the primary food supply (wheat) from your beneficial bacteria, you starve the probiotics. They die off unless you replace the prebiotics you’ve been getting from wheat, with other prebiotic foods. As good bacteria dies off, the bad bacteria continues to flourish and reproduce. This creates dysbiosis (an altered microbiome), an environment out of balance. Financial Concerns - Even your finances can have an impact on your mental well being. Several studies have shown finances impact the ability to adhere to a gluten-free diet. A study in Nova Scotia looked at 56 different gluten-free foods and compared them against their counterparts. Across the board, the gluten-free food was more expensive. Financial worries become an additional burden on a person already taxed with other serious concerns. A higher mortality rate is associated with the lack of adherence to a gluten-free diet. Studies show that people who are wealthier are able to comply with the dietary protocol more easily. The lack of adherence may stem from the depression, or it may be a contributing factor toward becoming depressed. Social Engagement Participation - Studies support a reciprocal relationship exists between an engaged lifestyle and cognitive function. People who are actively engaged in social activities, do better cognitively. Also, if you are functioning better cognitively, you are more likely to participate in mental, social, and physical activities. It revealed that they mutually influence each other. Isolation, depression, and high rates of suicide make it imperative that you don’t let a restrictive diet stand in the way of meeting the human need for socialization. Restrictive Diets Restrict Social Life (if you let them) You are faced with a lifetime of family celebrations, weddings, birthday parties, fraternity or sorority parties, festivals, and workplace events while living gluten-free. There is no, “I can’t wait until this is over” moment. Life on a gluten-free diet is from here on out. Food is such a focal point of celebrations for the majority of people, but it can be a source of disappointment and frustration for people with gluten-related disorders. Events can become less and less enjoyable when met with the same predictable frustration. You can’t have what everyone else is having - gluten-laden snacks, drinks, and entrees. You don’t know if that innocent looking side dish is gluten-free, and odds are the person that made it doesn’t either. Asking questions can wear you (and others) down, until you finally throw in the towel. Either you give up asking and eat it against your better judgement despite the impact it will have on your health, or you give up going out altogether in order to control your environment. Over time you may find others pulling away from inviting you to things, or you may pull away from social engagements. It can lead to isolation with Gloom and Doom as your new lifelong companions. Treatment and Intervention Unfortunately, people with celiac find the requirement of living gluten-free restricts their social life. This can lead to either abandonment of your gluten-free protocol (which is an absolute necessity for anyone living with celiac disease), or it can lead you to becoming isolated and lonely. Neither are good. You must adhere to a strict gluten-free diet. Like it or not, it is what your body needs. If you choose to dismiss your body’s need for that, you will see other chronic conditions pop up. They may be more serious and life threatening, or it may simply be more of a nuisance that you have to deal with. But your body will be sending out autoantibodies that attack your own cells, every time you eat even the littlest amount of gluten. Eventually, an autoimmune condition will be diagnosed that reveals what your body was up to. Let’s not do any further damage. Stick to the diet. Find a good therapist. This is especially important if you do not have a built in network of support. It is critical if you have depression. Venting to someone can really help take the weight off of the burdens you carry. Actively work to heal your gut, so it can better support you. You want to make sure that your microbiome is brimming with diversity. It should contain approximately 80% of what we would call good bacteria and 20% of what we might consider bad. Since that gut is sending messages to your brain directing it to how it feels and what it wants, be sure your brain is being steered by the good guys. Reach out for help. If you or a loved one are in crisis and feeling like you want to harm yourself, reach out for a lifeline and call the National Suicide Prevention Lifeline at 1-800-273-8255. You are not alone, and they are there to listen. Talk to them and find out how they can best support you during your darkest hours. Thanks to your ancestral design as a species, you function better with a support network to help you survive, and that is still true today. We all need others in our lives. Connect with others. Finding ways to reconnect with lost friends and family or connect with total strangers can be helpful in preventing feelings of loneliness and isolation, which can make depressive thoughts more present. Many celiacs suffer from isolation and exclusion. As their world becomes smaller, it makes suicide prevention even more challenging. So we need to find ways to keep people socially engaged and improve their quality of life. Practical Solutions for Maintaining Social Contact Plan to be spontaneous. I know that sounds like a contradiction, but when you want to continue living spontaneously, you need to be prepared for whatever life may throw at you. Carry a digestive enzyme with you at all times. Choose digestive enzymes that help to break down minor exposures to gluten within approximately an hour. This timing is critical because you want to make sure it is broken down before gluten proteins exit the stomach. That is when the autoimmune response gets triggered. This is not permission to eat foods with gluten, just protection against trace amounts of gluten that you may encounter in a restaurant setting or at a friends house - wherever life may take you. Adhere to that gluten-free diet. Higher mortality rates are associated with the lack of a gluten-free diet. Make sure that you address your gut health wholly, not just the absence of gluten, but the replacement of nutrients lost in the process - like prebiotics and probiotics. Improving your gut health will improve your overall health, including addressing issues surrounding depression and anxiety. Install a gluten-free restaurant locator app on your phone. Wherever you are, when you and your friends or family are ready to eat, find out which restaurants offer food friendly options. To be safe, take a digestive enzyme. One study provided a NIMA Sensor to 804 people. Out of the 5,600+ samples labeled gluten-free in restaurants, almost one-third came back as containing gluten. 27.2% of “gluten-free” breakfast items tested in the study came back as containing gluten. Dinner came in at 34%, with pizza and pasta coming in at skyrocketing numbers. Gluten-free pasta dishes in restaurants contained gluten 50.8% of the time, and gluten-free pizza served in restaurants contained detectable gluten 53.2% of the time. Carry a NIMA Sensor with you. A NIMA Sensor can detect trace amounts of gluten. If you order gluten-free food in a restaurant and it comes back “glutened,” know before you take that bite. Always carry some goodies with you, so you have something to eat. If you end up at a friend’s house, and it looks like almost everything they have is infected with gluten, rather than go home, eat a little something to carry you over or supplement it with the little bit that they do have that is gluten-free, like a piece of fruit. Find alternative opportunities to socialize in places that do not involve food. For instance, enroll in yoga, art classes, or a dance class. Don’t restrict yourself more than necessary. If chronic pain or sickness has you bedridden, talk to your friends and family on the phone. Facetime them or skype. Ask a friend over to watch a movie. Vary the friends a little, so you don’t restrict your world to one friend. Don’t be too embarrassed to ask friends to take you to appointments. You would do it for them if you could. Let them help you. Become the "hostess with the mostest." If you are one of those who loves a good party, show them how it is done with a 100% gluten-free buffet. Have those recipes ready to share with friends and neighbors, so that they can retrieve it for their future events when they are looking for a great recipe or a gluten-free recipe. Let people know that all of the recipes will be gluten-free beforehand, so that anyone with any concerns leaves them at home. Create and provide a list of gluten-free approved snacks for a weekly gathering like book club or game night. If others have food sensitivities, work this into the gluten-free list. It doesn’t matter if you end up with a list of only 5 things. This is just snacks and drinks that everyone can enjoy. This eliminates worries for everyone about what people can or can’t eat, and reduces the competitive urge to keep up with or outdo the person that brought food before them. Find ways to improve your quality of life. A lower quality of life is associated with a higher risk of suicide and a lower adherence to a gluten-free diet. Life may be very different from what you used to dream about, but that doesn’t mean you have to stop dreaming. Create a dream list and modify anything that is food-related to include or address those needs. You may find that most things that would improve your quality of life, have nothing to do with food. Dare to dream. Remember your now is not your future. Don’t cling to where you are now. Figure out where you want to be and how you can get there. Then live out loud.

Celiac.com 08/14/2019 - One question we get often is whether a gluten-free diet can help treat bipolar disorder. There’s growing evidence that autoimmune disorders and bipolar disorder are closely connected. It's also true that celiac disease and bipolar disorder are linked. People with celiac disease are many times more likely to have bipolar disorder than those without celiac. About 1% of the population has celiac disease. However, nearly 4.3% of celiacs are diagnosed with bipolar disorder, compared a 0.4% bipolar rate for the non-celiac control group. Having a mood disorder can have a major negative impact on quality of life in people with celiac disease. One study suggests that the negative impact on quality of life in people with celiac disease and bipolar disorder is second only to that of people with bipolar and MS. While there's been some study connecting gluten sensitivity and acute mania, there really hasn't been much research on a gluten-free diet for people with bipolar disorder. That means much of the information is anecdotal, and needs to be taken with a grain of salt. The topic thread on the Celiac.com forum contains robust commentary on the gluten-free diet and bipolar disorder. In his blog, Getting Older With Bipolar, George Hofmann shares his own experiences on being bipolar with celiac disease, and the benefits of a gluten-free diet. On going gluten-free, Hofmann says "I had gut problems for decades. I thought it was normal to feel like crap after I ate. Then I was diagnosed with celiac disease and my life completely changed. Please understand, though, that my bipolar disorder is still medically treated as it was before I knew I had celiac disease. Removing gluten from my diet has not led to the removal of my psych meds...My bipolar disorder is not cured. I just feel a lot better." Celiac disease increases immune activation, which many researchers think is an important factor in the onset of bipolar disorder. Many researchers suggest celiac disease screening for people with bipolar disorder who show some key symptoms or have a family history of celiac disease. Many of those same researchers suggest screening people with celiac disease for a mood disorders. To close, the current answer to the question whether a gluten-free diet can help treat bipolar disorder would be that there's a good amount of anecdotal evidence that a gluten-free diet can help to improve the general well-being of people with bipolar and other mood disorders. However, there's not much in the way of actual science to support those claims. Still, for people with bipolar disorder, there's likely not much of a downside to following a gluten-free diet, as long make sure you get adequate nutrition and fiber. As always, check with your doctor before adopting any treatment or change that may have an influence on your condition of symptoms. Also, consider getting tested for celiac disease. Read more at NIH