This course expertly led by Dr. Allyson Eamer was an excellent way to explore a wide range of topics in education and quite suitably widening my scope from educational technology (which tended to figure prominently in my academic studies and professional experience, admittedly by my design :P) towards rich topics like impact of social class, gender, race, aboriginality and privilege on learning. The impact of Peggy McIntosh’s idea on the “invisible backpack” was particularly revealing and engaging as Allyson led us to quite rightly forced to confront our own privileges and consider the experiences and struggles of our students, colleagues and their families in society.
Full List of topics here – Privilege and Invisible Behaviour
Diversity and Culturally Responsive Teaching
Social class, Poverty, and the Inner City
Indigenous Peoples and the Hegemony of Anglo Culture
Disability, Learning Challenges, and Mental Illness
Happily Ever After
Gender & Racial Discrimination in the Workplace
Immigration, Racism and Belonging
Youth Culture Identities, Values, and Apps
Sexual Orientation and Gender
Bullying and Safe Schools
For our own research, we were additionally encouraged to include a rather personal essay in the form an “autoethnography” in which we used “the self” as an avenue for further research and critical analysis. I chose to explore my struggles living with celiac disease not simply in term of health but additionally the social and cultural perspectives.
In 2017, director Ava Duvernay said “(w)e’re all human at the kitchen table” which is her well-intentioned description of the power of eating to break down divisions and celebrate our shared humanity. Despite the multitude of conflicts and inexhaustible divisions between us from race, gender, sexual orientation, culture, country of origin, politics and other attributes, the privilege of eating is a celebration of life. For those of us privileged enough, eating regularly not only provides sustenance physically but in all cultures is an universally social experience, and perhaps an emotional refuge from daily conflicts and struggle. However, for those suffering with celiac disease (CD) mealtimes provide a “battleground” for worry, doubt and sometimes dread. “Historically, CD was once considered a rare condition seen predominantly in those of northern European ancestry. Today, we now recognize that CD is quite common, yet it remains underdiagnosed by clinicians…” (Rampertab and Mullins, 2014) Celiac disease is “…characterized by an aberrant response to dietary gluten in genetically susceptible individuals that results in small intestinal injury and can be associated with diverse systemic consequences.” (Rampertab and Mullins, 2014) “(C)eliac disease is a very common condition, affecting 1 % of the population worldwide with wheat-sensitivity affecting up 10% of the population. In addition, in the last 30 years there has been an increased prevalence and incidence of celiac disease but it often goes undiagnosed by patient or doctor for a tremendous time (Murray, 2003). In the last 50 years, there has been an increased prevalence of celiac disease. (Rampertab and Mullins, 2014) The impact of ingesting wheat for those suffering celiac disease in the short term is unwanted intestinal symptoms resulting in abdominal pain, diarrhea and weight loss due to malabsorption of nutrients. The long term impact includes possible skin damage, serious damage to internal organs like the small intestine, liver and heart, increased risk of other gastrointestinal conditions and some forms of lymphoma and cancer.
I was first diagnosed in 2009 at 36 yet most likely suffered with the disease with varying degrees of severity my whole life until I self-diagnosed and sought out medical confirmation through a blood test. Today, I follow a strict doctor-recommended gluten-free diet which requires active management (see Appendix 1 for more perspective). In this paper, I will be using the autoethnography style to use the self to share and discuss the social-cultural elements of celiac disease including the impact of this disease on my daily life, work, my family, social relationships and my day-to-day interactions with others. I will also critically analyze this disease in terms of privilege, and finally, assess the marginalization of this disease as part of a “fad diet” or a lifestyle “choice” rather than an all-out struggle to find food as the number of foods and products containing wheat has increased. (Davis 2011)
The only current recommended solution for those suffering from celiac disease is a gluten-free diet for life. (Rampertab and Mullins, 2014) The gluten-free diet “…requires complete elimination of the gluten protein found in wheat, barley, and rye. All foods containing these grains as ingredients or through contamination must be removed from the diet.” (Rampertab and Mullins, 2014) However, wheat is often incorporated in many unlikely products like soups, broths, sauces and even french fries among many others. “Wheat has become ubiquitous, often added to processed foods, prescription drugs, even cosmetics.” (Davis 2011) It is even found in chewing gum, toothpaste, shampoo, lip balm, medicines and even the communion wafer at church so celiac sufferers must monitor anything ingested. For me, I even have to avoid licking envelopes! In addition, the preparation of food is critical for celiacs and others suffering from food allergies or sensitivities to avoid sickness from cross-contamination. At home, it is essential to have separate utensils and avoid shared condiments like butter or be sure to carefully clean or have separate cooking tools or surfaces like toasters, grills, pans or barbeques. Eating out is particularly challenging for celiacs as in the hustle and bustle of a restaurant kitchen, chefs and kitchen workers must take care to avoid shared cooking, food preparation, storage surfaces or utensils that include gluten. Following a gluten-free diet requires active management in the preparation and consumption of food. When eating out celiacs must have much trust in the fastidiousness of kitchen staff as well as proper facilities (separate dishes and preparation facilities to the avoid the avoid cross-contamination. Those without celiac disease or other food issues are unaccustomed to concerning themselves with these issues. Most people with even a small amount of money can usually find something to eat when outside their home for work or travel.
In terms of privilege, those who have the ability to eat without physical symptoms or sickness have gained an “unearned advantage” when compared to those who cannot. It is more likely that those suffering from celiac disease or other food sensitivities or allergies may not be able to always find food that is safe for them to eat. (My family are quite used to me packing a lunch or snacks most days!) For celiacs, the situation is compounded by the fact that even if gluten-free food is available there is always the danger of cross-contamination when food containing gluten is accidentally mixed. Adapting the style of Peggy McIntosh’s highly influential Invisible Backpack idea on privilege, those with a food privilege, unlike celiacs, can guarantee that they should be able to find things to eat in a most situations throughout the day. (1988) This is not usually a situation that most people travelling or out and about with food privilege will find or even consider. Those who have food privileges have an “invisible backpack” which in this case is “backpack is full of food” while the backpack for celiacs may be empty of food with little or fewer options.
When celiacs mention to non-celiacs their daily worry to find food, many non-celiacs admit to not even realizing this possibility. Due to the perceived elitist characteristic of this disease, celiacs are ironically labelled as “privileged” themselves. Both my family and I have suffered negative comments in restaurants, cafeterias, barbecues or other communal eating places from colleagues, sometimes from direct work superiors about our “luckiness” for getting a separate meal or our “choice” to follow a “fad diet” or our “fussiness” to only “accept” food of a particular quality. In these situations, I try to educate others in a kind and patient way and yet emphasize the seriousness and necessity of my situation. Although, my goal of every social occasion involving food is to get through it without someone mentioning my diet.
In terms of work, shared meals are often a venue for building relationships and connections with coworkers, clients and those in positions of higher responsibility. Being a celiac means that one has to make alternative arrangements to protect one’s health but do so at the risk of being labelling “difficult” or “demanding”. No doubt self-depreciating humour, graciousness and good manners (my usual tactics) hopefully help to mitigate the social stigma of being perceived as “demanding or difficult” as myself and others might require a “separate” meal than the one shared. When an alternative meal is not available, then celiacs have to face the dilemma of forgoing the offered meal, risking their health by eating it or excuse oneself from the meal and the social situation all together in order to go find alternative arrangements. In our society and the majority of cultures around the world, in which food is still considered a privilege, it is customary that people accept all food offered as a sign of respect for the host. Those suffering from celiac risk social stigma and potentially “lose face” in these situations. When in countries that do not share the same language or appreciation for this disease, the situation is even more difficult as a celiac’s explanation may be lost in transition or misinterpreted as a cultural faux pas. In addition, when compared to those suffering food scarcity in due to poverty, celiacs might be perceived as disrespectful for rejecting any food at all. In short, mealtimes outside their home can be a source of worry, alienation and marginalization for celiacs especially in social and work situations.
And yet there are a number of people today who choose to adopt a gluten-free diet. The market for gluten-free food has exploded due to the increased diagnosis of this disease and a significant amount of people who are choosing to adopt a gluten-free diet for health and lifestyle reasons. In addition, there are more gluten-free options than ever with the gluten-free food industry in the United States exceeded $5 billion and that a growing number of restaurants are offering gluten-free options (Metcalf 2013). In terms of health, books like Wheat Belly describe “(e)ating wheat…is an extreme sport. It is the only common food that carries its own long-term mortality rate.” (Davis 2011) It is no surprise that “Kellogg’s, the world’s largest cereal maker, has seen its biggest drop in sales since the 1970s. Food companies are selling off their struggling bread divisions, while wheat sales are plummeting across Canada.” (CBC News 2015) Some books promote the idea that a gluten free diet can benefit “anyone” interested in losing weight and improving their health which is pretty much everyone!. The popularity of books like Wheat Belly and the endorsement by many such celebrity spokespeople like Elizabeth Hasselbeck portray wheat as an addictive substance in which our plentiful consumption has led to obesity, arthritis, neurological incapacity and poorer health. Yet the connection between the consumption of wheat and addiction is tenuous at best. (The War on Wheat 2015) “More people than ever are buying, cooking and eating gluten-free foods — not that they all require the diet. Gluten-free living appeals to about 30 percent of American adults — but seems to still be widely misunderstood.” (Klein 2014) This misunderstanding occurs when the gluten-free diet is adopted as a weight loss strategy and compared with “Paleo Diet” or “Atkins Diet”. This desire for weight loss reinforces the acceptance of a slim and perhaps even underweight body shape or phenotype as the ideal for women and its more muscular equivalent in males. Yet this diet may improve appearance and even skin quality but this does not equal to better health. “In addition, there are concerns about the nutritional adequacy of GF products as they can be high in fat and sugar, and often low in fiber, iron and B vitamins.” (Rashid 2016) In other words “…simply going gluten free doesn’t guarantee the loss of pounds and inches – quality and quantity still matter most.” Finally, the expense of a gluten free diet is seemingly another reason why it should be avoided unless one has celiac disease or non-celiac gluten sensitivity. “There’s more of a modern concern that gluten is somehow not good for us, possibly linked to our transition from hunter-gatherers to cultivators and farmers and the simultaneous increase of grains in our diet. But there’s little evidence proving going gluten-free means good health.” (Klein 2014) The Canadian Celiac Association, the American Heart Association, the Obesity Society and the American College of Cardiology all refuse to endorse gluten-free diets for anyone who does not have celiac disease.” (CBC News 2015) Most foods that are gluten-free are more expensive and the Canadian government, to their credit, even now offers tax breaks to those families that are celiac. For some celebrities promoting the gluten-free diet, perhaps the increased cost adds an extra layer of exclusivity to their lifestyle. For the rest of us, we would rather not have to spend excessive funds on the necessary food staples in order to have more for the other needs and necessities.
In short, having celiac disease is certainly not ideal but one’s quality of life is improved through the strict adherence to the gluten-free diet. Today, we now recognize that CD is quite common, yet it remains underdiagnosed by clinicians despite the increased attention it has been receiving in the public sector due in large part to investigations by…” medical practitioners, advocates and other foundation and support groups. (Rampertab and Mullins, 2014) After years as the main staple of humanity’s diet for the last 10,000 years, many have began to question the impact of this diet on our health. Many like Davis, have claimed that wheat needs to be cut out for everyone but there is certainly skepticism from many fronts that the gluten-free diet is necessary for all. Perhaps this new assertion even distracts from the need for celiacs to achieve the recognition for the challenges and struggles of this diet due to proliferation of wheat in our foods in grocery stores, restaurants and other food vendors. On a personal note, it has certainly altered my personality to be more vigilant, critical and disciplined about my eating and definitely more of an advocate for my health and the health of my family. Using techniques like humour (mostly at my own expense) I look to mitigate the potential social stigmas of this diseases as elitist, exclusive and characterization of myself as “picky” or “difficult” as best as I can. In my professional experience, my “battle” with celiac disease has made me more sensitive and less critical to the individual and perhaps hidden physical, emotional and mental challenges faced by my students, colleagues and friends. I am certainly less likely to be judgemental when considering others and be supportive to their individual needs in my position of authority. Ellis in her autoethnographic writing hopes to explore “…meaningful, accessible, and evocative research grounded in personal experience …sensitize readers to issues…and deepen our capacity to empathize with people who are different. ” (Ellis et al. 2010) I share her goal in the writing of this autoethnography with specific challenges with celiac disease. After all, “while the overall diagnosis rate of CD is increasing in the United States and worldwide, the vast majority of patients in the United States remain undiagnosed.” (Tavakkoli and Lebwohl 2014) Overall, much work needs to be done to educate others about celiac disease so that mealtime becomes less of a “battlefield” and celebration of life for all.
CBC News, Wheat Belly arguments are based on shaky science, critics say. Retrieved from http://www.cbc.ca/news/wheat-belly-arguments-are-based-on-shaky-science-critics-say-1.2974214
CBC News. (2015) The War on Wheat – the fifth estate Retrieved from https://www.youtube.com/watch?v=eO3cIrNEuIc
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Klein, Sarah. (2014) 9 Things You Should Know Before Going Gluten-Free. Celiac Disease Foundation. Retrieved from https://celiac.org/blog/2014/02/9-things-you-should-know-before-going-gluten-free/
McIntosh, Peggy (1989) White Privilege: Unpacking the Invisible Knapsack Peace and Freedom, July/August, 1-5.
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Rampertab S.D. and G.E. Mullin S.D. (eds.), (2014) Celiac Disease, Clinical Gastroenterology, 1 DOI 10.1007/978-1-4614-8560-5_1, © Springer Science+Business Media New York
Rashid, Mohsin. (2016) Non-Celiac Gluten Sensitivity: How to Diagnose and Differentiate it from Celiac Disease. Professional Advisory Council, Canadian Celiac Association. Retrieved from http://www.celiac.ca/b/wp-content/uploads/2016/04/nonceliac_sensitivity_diagnosis_resource_CCA_March_2016.pdf
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Further Reading and Resources
Excerpt from “Wheat Belly” by William Davis
DON’T EAT COMMUNION WAFERS WITH LIPSTICK ON
Even knowing the painful and potentially severe consequences of eating gluten foods, celiac sufferers struggle to avoid wheat products, although it seems like an easy thing to do. Wheat has become ubiquitous, often added to processed foods, prescription drugs, even cosmetics. Wheat has become the rule, not the exception.
Try to eat breakfast and you discover that breakfast foods are a landmine of wheat exposure. Pancakes, waffles, French toast, cereal, English muffins, bagels, toast … what’s left? Look for a snack, you’ll be hard pressed to find anything without wheat—certainly not pretzels, crackers, or cookies. Take a new drug and you may experience diarrhea and cramping from the tiny quantity of wheat in one small pill. Unwrap a stick of chewing gum and the flour used to keep the gum from sticking may trigger a reaction. Brush your teeth and you may discover there is flour in the toothpaste. Apply lipstick and you can inadvertently ingest hydrolyzed wheat protein by licking your lips, followed by throat irritation or abdominal pain. At church, taking the sacrament means a wafer of … wheat!
For some people, the teensy-weensy quantity of wheat gluten contained in a few bread crumbs or the gluten-containing hand cream collected under your fingernails is enough to trigger diarrhea and cramps. Being sloppy about gluten avoidance can have dire long-term consequences, such as small intestinal lymphoma.
So the celiac sufferer ends up making a nuisance of herself at restaurants, grocery stores, and pharmacies, having to inquire constantly if products are gluten-free. Too often, the minimum wage salesclerk or overworked pharmacist has no idea. The nineteen-year-old waitress serving your breaded eggplant usually doesn’t know or care what gluten-free is. Friends, neighbors, and family will see you as a fanatic.
The celiac sufferer therefore has to navigate the world constantly on the lookout for anything containing wheat or other gluten sources such as rye and barley. To the dismay of the celiac community, the number of foods and products containing wheat has increased over the past several years, reflective of the lack of appreciation of the severity and frequency of this condition and the growing popularity of “healthy whole grains.””