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Celiac.com 02/24/2024 - A recent poll conducted by Celiac.com shed light on various aspects of celiac disease knowledge and experiences among respondents. However, one finding stands out starkly: 18% of respondents admitted to cheating on their gluten-free diet. This revelation underscores the critical importance of emphasizing the necessity of strict dietary compliance for individuals with celiac disease. Cheating on a gluten-free diet can have serious consequences, ranging from uncomfortable symptoms to long-term health complications such as intestinal damage, malnutrition, and an increased risk of other autoimmune conditions. In this article, we explore the implications of this poll result and why maintaining a gluten-free diet is paramount for the health and well-being of individuals living with celiac disease. Question 1: Celiac disease is an autoimmune disorder. Celiac.com's poll revealed that 100% of respondents correctly identified this statement as true. This is an essential fact about celiac disease. When individuals with celiac disease consume gluten, their immune system mistakenly attacks the lining of the small intestine, leading to various symptoms and potential long-term complications. The autoimmune nature of the condition underscores the seriousness of adhering to a strict gluten-free diet to manage symptoms and prevent further damage. Question 2: Celiac disease is primarily a genetic condition. While 58% of respondents recognized this statement as true, it's crucial to emphasize that genetics play a significant role in celiac disease. Having certain genetic markers, such as the HLA-DQ2 and HLA-DQ8 genes, increases the likelihood of developing the condition. However, genetics alone do not determine who will develop celiac disease, as environmental factors also play a role. Question 3: Cross-contamination with gluten can trigger symptoms in individuals with celiac disease. Nearly all respondents (98%) correctly identified this statement as true. Cross-contamination occurs when gluten-free foods come into contact with gluten-containing products or surfaces, leading to the inadvertent ingestion of gluten. Even trace amounts of gluten can provoke symptoms in individuals with celiac disease, highlighting the importance of strict dietary adherence and careful food preparation practices. Question 4: What is the name of the protein in wheat that triggers the immune response in celiac disease? The majority of respondents (76%) correctly selected gliadin as the protein in wheat responsible for triggering the immune response in celiac disease. Understanding the specific components of gluten, such as gliadin, is crucial for individuals with celiac disease to effectively identify and avoid gluten-containing foods. Question 5: Celiac disease is more common in people of European descent. A significant majority of respondents (68%) correctly identified this statement as true. While celiac disease can affect individuals of any ethnicity, it is more prevalent among those of European descent. This highlights the importance of considering genetic predisposition when assessing the risk of celiac disease in different populations. Question 6: Dermatitis herpetiformis is a skin manifestation associated with celiac disease. A vast majority of respondents (92%) correctly recognized this statement as true. Dermatitis herpetiformis is a chronic, blistering skin rash that is strongly associated with celiac disease. It is caused by the same immune response to gluten that damages the intestinal lining in individuals with celiac disease. Question 7: What percentage of people with celiac disease may go undiagnosed? 28% of respondents correctly identified 50% as the percentage of people with celiac disease who may go undiagnosed. This statistic sheds light on a concerning reality within the celiac disease community. Despite increased awareness and diagnostic tools, a significant portion of individuals with celiac disease remain undiagnosed. There are several factors contributing to this high rate of underdiagnosis. Firstly, the symptoms of celiac disease can vary widely and overlap with those of other gastrointestinal disorders, making it challenging for healthcare providers to recognize the condition. Additionally, some individuals with celiac disease may experience mild or atypical symptoms, leading them to dismiss their symptoms or attribute them to other causes. Cultural and societal factors may also play a role, as misconceptions about celiac disease and gluten sensitivity persist, leading to delays in seeking medical attention or reluctance to undergo testing. Furthermore, lack of access to healthcare, particularly in underserved communities, can further exacerbate the problem of underdiagnosis. Addressing these barriers to diagnosis and increasing awareness among both healthcare providers and the general public are crucial steps in improving the identification and management of celiac disease. Question 8: Medications can sometimes contain gluten as an inactive ingredient. An overwhelming majority of respondents (96%) correctly identified this statement as true. It's essential for individuals with celiac disease to carefully check the ingredients of medications, as gluten can sometimes be present in inactive ingredients or as a coating on tablets. Question 9: The terms "wheat-free" and "gluten-free" are interchangeable. While 91% of respondents correctly identified this statement as false, it's worth emphasizing the important distinction between "wheat-free" and "gluten-free." While a wheat-free diet excludes wheat and its derivatives, a gluten-free diet eliminates all sources of gluten, including wheat, barley, and rye. Question 10: Which nutrient deficiency is commonly associated with untreated celiac disease? A significant majority of respondents (70%) correctly selected vitamin D deficiency as a common nutritional consequence of untreated celiac disease. Malabsorption of nutrients due to damage to the intestinal lining can lead to deficiencies in various vitamins and minerals, highlighting the importance of proper nutritional management in individuals with celiac disease. Question 11: Celiac disease can affect the neurological system, leading to issues such as gluten ataxia. An overwhelming majority of respondents (96%) correctly identified this statement as true. Neurological manifestations of celiac disease, such as gluten ataxia, underscore the systemic nature of the condition and the potential for diverse symptoms beyond gastrointestinal issues. Question 12: What is the most reliable treatment for celiac disease? An overwhelming majority of respondents (98%) correctly selected a gluten-free diet as the most reliable treatment for celiac disease. Strict adherence to a gluten-free diet is essential for managing symptoms, promoting intestinal healing, and preventing long-term complications associated with celiac disease. Question 13: Celiac disease has been linked to an increased risk of osteoporosis. A vast majority of respondents (90%) correctly identified this statement as true. Malabsorption of calcium and vitamin D, along with chronic inflammation associated with celiac disease, can contribute to decreased bone density and an increased risk of osteoporosis. Question 14: Quinoa is a grain that contains gluten. 86% of respondents correctly identified this statement as false. Quinoa is a gluten-free grain that can be safely consumed by individuals with celiac disease as part of a gluten-free diet. Question 15: What is the medical term for the biopsy procedure used to diagnose celiac disease? The majority of respondents (79%) correctly selected endoscopy as the medical term for the biopsy procedure used to diagnose celiac disease. During an endoscopy, a small tissue sample is taken from the small intestine to assess for characteristic changes associated with celiac disease. Question 16: Do you cheat on your gluten-free diet? This question delves into a significant issue within the celiac disease community: adherence to a gluten-free diet. While 82% of respondents reported not cheating on their gluten-free diet, 18% admitted to doing so. This highlights the challenges that individuals with celiac disease may face in maintaining strict dietary compliance and underscores the need for ongoing education, support, and access to gluten-free resources to help individuals effectively manage their condition and prevent potential health complications. Additionally, it's worth noting the significant advancements in gluten-free food options in recent years. With the increasing awareness of celiac disease and gluten sensitivity, there has been a proliferation of gluten-free products available in grocery stores and online retailers. Moreover, many whole foods are naturally gluten-free, including fruits, vegetables, meats, fish, dairy, and gluten-free grains like quinoa and rice. Restaurants have also responded to the demand for gluten-free options, with many establishments now offering dedicated gluten-free menus or clearly labeling gluten-free choices on their regular menus. With such wide availability of gluten-free alternatives, individuals with celiac disease have more options than ever to enjoy delicious and safe meals without the need to compromise their dietary restrictions. This accessibility underscores the importance of making informed choices and prioritizing health by adhering to a strict gluten-free diet. In 2002 Celiac.com ran a similar poll question where ~42% of people reported cheating regularly on their gluten-free diets, so in comparison to 22 years ago there has been a significant decrease in the number of people who cheat on their gluten-free diets. In conclusion, Celiac.com's latest poll provides valuable insights into the knowledge, experiences, and challenges faced by individuals living with celiac disease. From understanding the autoimmune nature of the condition to recognizing the importance of dietary adherence and vigilance in avoiding gluten, these findings underscore the multifaceted nature of managing celiac disease and the ongoing need for education, support, and advocacy within the celiac disease community.

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 02/13/2020 - I made a rare visit to a cousin a year or so after I was diagnosed with celiac disease. As the youngest child in a large extended family, my cousin was closer to my mother's age than mine. He took my mother and me on a beautiful ride around Kansas City. I sat in the back seat as they reminisced about their younger lives while passing the places where they experienced them. It came time for lunch and he wanted to take us to a favorite BBQ place in the heart of Independence, MO. I hesitated at his suggestion, and he said, "You aren't one of those vegemanaterians, are you?" The coy word he used, and his tone suggested his disapproval of anything out of the ordinary. (In fact, at that time I was a gluten-free vegan!) I said, "I'll find something." During lunch, I picked at French fries, pretty sure they were cooked in a dedicated fryer. My mother and cousin exuberantly scarfed the BBQ. My cousin told us about another cousin I hadn't seen in over 40 years that I apparently look like and reminded him of. He said, "Cousin Sandra is weird. She used to bring her own food to our family dinners." He was referring to a time, fifty years ago. Back then, members of the extended family met at my grandmother's house every Sunday to share their views on politics and happenings in the world. It was a close-knit family. Dinner consisted of the main dish (usually pressure cooked ham, green beans, onions, potatoes, bread, and cake for dessert) made by my grandmother, and side dishes brought by my aunts. I was no older than five, and have hazy recollections of these dinners, other than the warmth of family and the familiar smells of home cooking. To be included meant to eat, drink, smoke (it seemed they all did it back then) and converse around that big dining room table. I can imagine that someone daring to bring their own food, spreading it out on their placemat and eating it, while all those other dishes were being passed, might not go over well. As I reflect on my cousin Sandra, it occurs to me that she may have had celiac disease. That was in the early 1960's when it was virtually unheard of in the United States. Why else would she have had to bring her own food to those cherished dinners? A diagnosis prohibiting food of any kind would have been alien and unfathomable to anyone in my family. These are people who lived through the depression after all, where popcorn was the fare for breakfast, lunch, and dinner, if they even had that! Waving away any food, especially foods made by loving hands would have been viewed as an arrogant rejection of their abundance and love. Perhaps she had a mental illness that made her "weird," or maybe she made unreasonable demands on the family, but I think the most likely reason is that she was just trying to protect her health. Considering how my cousin put it, she was weird only because she brought her own food to the family dinners. In his eyes, she became the "weird one," ousted by the family because of her audacity to bring her own food to the dinner party. Family lore according to my mother goes on to say that: "She ultimately divorced our family." Can you do that? It's a sad story, isn't it? But I think about it from time to time. I wondered if Sandra was so maligned because the family decided her special needs were so odd that they ostracized her, and she ultimately rejected them. Does that mean that anyone in the younger generation who may have inherited the same disease runs the risk of being shunned? I'd like to think we're more enlightened now, but thankfully, I'll never know. I do recall that my mother shushed family when they talked about their illnesses around me, fearing I'd imitate them, I suppose. Her attitude was that you made yourself well, or you made yourself sick, and I think she was careful to protect me from hearing about other people's illnesses so I didn't get the idea that I may have them too. She had a Pollyannaish perspective, and thought everyone in her family was perfect, no matter what. That made it very challenging for me to convince her that something wasn't perfect with me when I was finally diagnosed with celiac disease. In fact, I think she thought I brought it on myself. (I was in my mid-forties when properly diagnosed.) These were her "truths" and likely the "truths" of the collective family. Most of those people around that dinner table fifty years ago have passed on, I imagine happily gathered "around that table in the sky." In Sandra's case, family members didn't understand her dietary restrictions, agreeing she was "weird" and rejecting her for her special needs. She was stereotyped as a prima-donna. Cumulative family lore develops through repeated acts of storytelling formulating familial ideologies that perpetuate collective "truths." These stories form the group's opinion on given topics. Sometimes these "truths" evolve from just participating in the same activities together, and developing a way of doing things that everyone agrees on, as described with the Sunday dinners above. In their lively discussions, my extended family debated "truths" about politics, news stories, and current events. Similarly, they had a collective opinion about how each other should act while sitting around that table. When someone altered the established norms, like Cousin Sandra, she disturbed rituals, and rocked the family's agreed-upon "truths." Her rejection of the foods required the family to rewrite their collective story. This is rarely done on a conscious level, but rather it is done as groupthink. The unspoken "truth" was: you do what we do, eat what we eat, and even smoke what we smoke in order to fit in. Buck that system, and suffer the consequences. In Cousin Sandra's case, the group determined her choices were a rejection of the others. She refuted the established but unspoken ideology (or taken for granted truths). As a result, she was rejected and mocked. From their view, if she didn't participate, she self-selected alienation. Before rejecting her, they likely cajoled her to participate, suggesting a little won't hurt you, or come on, just a bite. In fact, I can "see" my grandmother holding up a fork with a bite on it, saying, wouldn't you like just a taste? These urgings are attempts to include rather than exclude. What they really are saying is: you don't want to be rejected by the family by refusing our norms… come on, just have a little so you can stay a part of our group. That is actually a compassionate message. But we don't "hear" it that way when the food being offered to us is poison, and when we feel our needs are not being honored or understood. "Man is by nature a political animal with an innate tendency to form into groups" (Aristotle). Cousin Sandra was a victim of groupthink. Groupthink is a process described originally by Janis (1972) where those empowered in a group share a common belief, whether it is true or not, and then put pressure on those who do not comply with those truths. Those not going along with the group's ways of thinking are censored, ignored, or ultimately culled unless they comply. Those who share the group's opinion are unified members of the group. Groupthink evolves through the process of familial storytelling where "truths" are formed and solidified, sometimes becoming self-censored, and self-serving (Janis, 1972). Ideologies are assimilated through conversation that conveys a story that intertwines cultural influences with long-held beliefs (Fisher, 1989). Narrators balance truth with motivations in a cohesive story with significant meaning (White, 1980) and seek reinforcement or agreement from outside culture, religion, and political influential forces (McAdams, Reynolds, Lewis, Patten, & Bowman, 2011). This story telling process to formulate "truths" is integral to family traditions, making meaning of shared life, "doing family" (Langellier, & Peterson, 2018, p. 1), and teaching family values (Koenig Kellas & Kranstuber Horstman, 2015). It is in our initial home where we learn fundamentals for what and how to eat, how to cook, how to participate in food-related rituals), as well as gender roles and power structure biases around food (de Certeau, et al., 1998; Pecchoni, Overton, & Thompson, 2008). Groupthink is a way of encouraging belonging to the group or family and creates power structures of "us" and "them." I don't think anyone in my family ever intended to bully Cousin Sandra out of the group, It just happened because of their rigid policies on how we ought to act perpetuating the ideology: Think like us, and belong. I doubt anyone ever talked openly about it because they lacked the tools and skill to broach a constructive conversation. Food is so integral to our social existence that forsaking the foods made by loving hands implies a repudiation of those hands, and the people who share it. Breaking bread around the dinner table is a way that people bond. Not taking that bread, or accepting that cup of tea, or eating what everyone else eats, is viewed as a silent form of rejection. This is why having gluten sensitivities causes so many social issues, and is one of the topics in my book. People I surveyed and interviewed told me many stories like the one above. As I reflected on what people said, I realized that the root of the problem is that we do not have language to talk about these things. If we could say, "I'm not rejecting any of you by not sharing your food. I have a disease that prevents me from eating it, and I still want to sit at this table and be a part of the conversation." We just don't seem to be able to have these candid conversations. But by identifying these flawed social norms, we can work to change them, so people rejecting food served around the extended family dinner table can be included, loved, and un-judged for their choices. The first step is to identify these long held "truths," put words to them, and discuss them openly, rather than living with unstated dysfunctional consensual rules that cause people who defy them to be alienated. Let's discuss. What long held "truths" does your family live by? Please describe a time when you felt excluded because you didn't eat the foods everyone else was eating around the table. How did you handle it? How did the others at the table handle it? What would you tell Cousin Sandra if you could talk to her? How does your family form "truths?" What happens when someone rocks the "truth" boat in your family? How do you collective reform your opinions/"truths?" References: de Certeau, M., Giard, L., & Mayol, P. (1998). The practice of everyday life, Vol. 2. Minneapolis, MN: University of Minnesota Press. Fisher, W. R. (1989). Human communication as narration: toward a philosophy of reason, value, and action. Columbia, SC: University of South Carolina Press. Janis, I. L. (1972). Victims of groupthink. Boston: Houghton Mifflin. Koenig Kellas, J., & Kranstuber Horstman, H. (2015). Communicated narrative sense making: understanding family narratives, storytelling, and the construction of meaning through a communicative lens. In L. M. Turner & R. West (Eds.), Sage Handbook of Family Communication (pp. 76–90). Thousand Oaks, CA: Sage Publications, Inc. Langellier, K. M., & Peterson, E. E. (2018). Narrative performance theory: making stories, doing family. In D. O. Braithwaite, E. A. Suter, and K. Floyd (Eds.), Engaging Theories in Family Communication Multiple Perspectives (pp. 43-56). New York, NY: Routledge. McAdams, D., Reynolds, J., Lewis, M., Patten, A., & Bowman, P. (2001). When bad things turn good and good things turn bad: Sequences of redemption and contamination in life narrative and their relation to psychosocial adaptation in midlife adults and in students. PSPB, 27(3), 474-485. doi: 10.1177.0146167201274008 Pecchoni, L., Overton, B., & Thompson, T. (2008). Families communicating about health. In L. M. Turner & R. West (Eds.), Sage Handbook of Family Communication (pp. 306-319). Thousand Oaks, CA: Sage Publications, Inc. White, H. (1980). The value of narrativity in the representation of reality. Critical Inquiry 7(1), 5-27. No doi.