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Celiac.com 04/12/2022 - Fresh off the catwalk at Lakme Fashion Week, where she wowed audiences with the work of designer duo Shivan and Narresh, Miss Universe 2021, Harnaaz Sandhu, took a minute to call out those who trolled her for gaining weight. “Many people do not know I am allergic to gluten. I’m one of those individuals who was first bullied that ‘she’s too skinny’ and now they bully me by saying ‘she’s fat’. Nobody knows about my celiac disease. That I can’t eat wheat flour and many other things,” she told the Press Trust of India (PTI). Further, she explained how one’s body undergoes a host of changes due to geographic changes. “When you go to a village, you see changes in your body. And I went to New York for the very first time, it’s is a whole other world altogether.” As a Smile Train Ambassador, Miss Sandhu has worked to use her celebrity to turn the spotlight to the needs and struggles of others. She recently traveled to Smile Train partner hospital National Heart Institute in Delhi where she met with surgeons, cleft patients and their families, and witnessed a life-changing cleft surgery. While being underweight has been a classic symptom of celiac disease, being overweight is also common, especially among those diagnosed as adults. Miss Sandhu's experience with weight bullies is nothing new, and hopefully her public announcement of her celiac disease can help to inform and encourage others, and to shine a light on the ongoing struggle against body critics and shame of all kinds. With or without celiac disease, you don't have to be thin to take care of yourself, stay healthy, and, as Miss Sandhu shows, be beautiful. That's certainly a message to celebrate. ALSO READ: Miss Universe 2021 flashback: Harnaaz Sandhu shares her ‘favorite looks from the incredible journey’ Celiac Disease Symptoms While some symptoms such as weight loss, diarrhea and constipation among others are common in both adults and children, symptoms can vary by age and individual, and include: Common Celiac Disease Symptoms In Adults Abdominal pain Anemia Bone or joint pain Heartburn Dermatitis, herpetiformis Headaches or fatigue Mouth ulcers Nausea Nervous system injury Numbness or tingling hands or feet Common Celiac Disease Symptoms In Children Bloating or belly swelling Constipation Diarrhea Pale, foul-smelling poop Upset stomach or vomiting Weight loss How does celiac disease impact a person's weight? Celiac.com has done a number of articles on celiac disease, overweight, and obesity. One key takeaway is that, while many people with celiac disease are underweight, normal and overweight people can also have celiac disease. In fact, one study found that nearly half of new celiacs are overweight at the time of diagnosis. Read more in the Indian Express
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Celiac.com 02/08/2017 - "What if the kid you bullied at school, grew up, and turned out to be the only surgeon who could save your life?" --Lynette Mather If you ask any high school senior what in their life has changed the most since kindergarten, statistics show that many would answer moving from one school to another. However, the more drastic of changes are seen such as illnesses diagnosed during these critical school ages. In 2009 I was diagnosed with celiac disease, and that diagnosis has impacted my life in both positive and negative ways for my past, present, and future time at Indiana Area High School and beyond. Personally I have had to deal with bullying because of my disabilities. Bullying by definition is the use of force or coercion to abuse or intimidate others. I along with 20% of my peers nationwide in grades 9-12 (The Youth Risk Behavior Surveillance System) experience bullying in many different forms. Bullying can be teasing, hitting, leaving someone out, whispering behind backs, online harassment, shoving, remarks about race, sexuality, and disabilities. Before my diagnosis I was considered "normal" but as a result of my illness and "strange" dietary needs therefore I have been bullied. However, looking back on my experience I am happy to have dealt with the resistance because it has made me a better, more confident individual. I, like three million fellow Americans nationwide (National Celiac Disease), must deal with the stress of having celiac disease. I was diagnosed in 2009 after having lost my eyesight to a migraine. Celiac Disease is an often under-diagnosed autoimmune disease wherein the person cannot eat wheat, rye, barley, or oats, otherwise known as gluten, because their antibodies will attack their own system leading to other serious health issues such as cancer. Celiac Disease is spread through genes; my entire family, including my father, mother, and sister, has this disease. However, even with the growing awareness of celiac disease, there is also a growing skepticism. "Critics" of my disease claim that the gluten free diet is a fad. Many celebrities have tried to lose weight and failed to stay on this difficult diet. Restaurant chains are coming out with new gluten free menus every day to raise prices and profits, though they refuse to educate their servers about what someone with a gluten "allergy" cannot eat. While some people are sympathetic and know the outstanding facts about celiac disease, most of the population stays in the dark about this ailment. This causes frustration for people with celiac disease, like me, to have to deal with the resulting brick wall of resistance. In my small community it is very rare for someone to have such a disease that the public knows little about. This can cause doubt and disbelief, especially at a high school where everyone is just trying to "fit in". When I was diagnosed in 2009, I had just started ninth grade and I had also started playing two high school sports, softball and tennis. For the softball team it was a well-known fact that after every away game the softball boosters would buy each girl a twelve inch sub from a local deli to eat on the way home. Whenever my parents and I contacted the booster president to explain the situation with my disability and that I simply would like to have a salad, we were met with backlash. I did not understand at the time why a parent would refuse to supply another child with food after a physical activity when everyone else was getting a meal. This quickly made me an outcast on the softball team as the "strange girl with the made up disease", causing me to feel stressed and awful about myself over something that I could not control. I would have loved to have been able to "fit in" and eat the subs like my teammates rather than being different, especially after growing up able to eat gluten! It was a hard transition to make. I went from being able to eat the subs, donuts, pizza, and any other fast-food product to a strict dietary regime. After my long process through the education system, I finally got the meal I had a right to have. Unfortunately, the boosters' actions, forced us to go through the school system to "prove" I had a legitimate excuse not to eat the subs. I was distanced from other members of the team and, in subsequent years, had to deal with backlash from my teammates. They do not understand that it is not a personal choice to avoid gluten. I have a disability. I simply cannot eat it. Instead, they go back to the first year when I was eating the same foods they ate, and I get blamed for wanting to be "special" and get the more expensive food. I know that I am not alone in my struggle and that people with celiac disease around the world deal with what I deal with everyday - just like others who are bullied for being different. The after effects from my being bullied have shown themselves even in everyday situations. I have learned a great deal about myself and respect for other individuals' differences. I believe that if I had not been bullied I would not have the self-confidence, integrity, sense of right and wrong, or leadership skills that I have now. It has allowed me to go above and beyond in tough situations, knowing that I can overcome them. I know that even though the times are tough with my disability, and that while others may never understand mine, I can certainly understand and respect theirs. I respect and do not judge others simply based on what they can or cannot eat. I also know that just because someone does not "look" ill on the outside does not mean they are not dealing with something awful on the inside. This allows me to make friends easily and to understand others more effectively. Being bullied has also allowed me to learn new leadership skills that I use in my volunteer work. I am confident in myself that I can go forward into the world of higher education and succeed because of the values I now hold dear. The most drastic change I have encountered in my high school career is the diagnosis of celiac disease in 2009. This diagnosis has impacted my life in both positive and negative ways, in the past, present, and future at Indiana Area High School and beyond. I have had to deal with bullying because of my disabilities. Bullying, by definition. is the use of force or coercion to abuse or intimidate others. I along with 20% of my peers nationwide in grades 9-12 (The Youth Risk Behavior Surveillance System) experience bullying in many different forms. After dealing with the effects of my being bullied, I know that it has made me a better person. I can travel the world and make lasting relationships based on acknowledging and respecting differences in every person I encounter.
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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.
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Celiac.com 01/25/2019 - Last year was a very bad year for food allergy bullying. It started off with the Party City commercial calling Celiacs gross, then the Peter Rabbit movie mocking anaphylaxis shock, and of course, the Grinch billboards. The national campaign for the Grinch movie included billboards, subway platforms, on buildings and buses. They all have the Grinch saying some type of negative quote or notion. However, there was one billboard in particular that crossed a line. The billboard had a quote from the character that received a lot of negative attention due to the undesirable concept that it enforced. It read: "I put gluten in your smoothies." This was supposedly to poke fun at those who avoid gluten because of the fad diet, rather than as an actual medical necessity. However, that is not how it was perceived by the celiac community. With all this negative media towards those with real health issues and food allergies, the unfortunate result was bullying that led to a death. If you have not heard the story yet, there was a thirteen-year-old boy that died because of his schoolmates. They thought taunting him with dairy, which he was allergic to, would be absolutely hilarious. This is the exact same message the billboard portrayed to the public. We need to stop and really think before we laugh at the media’s supposed humor. A lot of individuals have already seen this movie in the cinemas, but let’s think twice before we purchase the DVDs. Let’s show Hollywood that mocking people with food allergies, intolerances, and sensitivities is not, in any way, acceptable behavior.
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