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The Transition to a Special Needs Consumer: My Ethnographic Journey Caused by Celiac Disease and Diabetes Lawrence Lepisto, Central Michigan University

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The Transition to a Special Needs Consumer: My Ethnographic Journey Caused by Celiac Disease and Diabetes Lawrence Lepisto, Central Michigan University ASSOCIATION FOR CONSUMER RESEARCH Labovitz School of Business & Economics, University of Minnesota Duluth, 11 E. Superior Street, Suite 210, Duluth, MN 55802 The Transition to a Special Needs Consumer: My Ethnographic Journey Caused By Celiac Disease and Diabetes Lawrence Lepisto, Central Michigan University The Transition to a Special Needs Consumer: My Ethnographic JourneyCaused by Celiac Disease and DiabetesLawrence LepistoCentral Michigan UniversityAbout two years ago I was diagnosed with celiac disease for which the only treatment is a strict gluten-free diet which eliminate all foods containing wheat, rye, or barley. Then, nine months ago I was found to have developed diabetes which added further dietary restrictions, blood sugar monitoring, and medications. This paper describes, in ethnographic fashion, the resulting changes in my consumer behavior and offers insights into the behavior of many other consumers who face different dramatic restrictions in their diets. [to cite]: Lawrence Lepisto (2006) ,"The Transition to a Special Needs Consumer: My Ethnographic Journey Caused By Celiac Disease and Diabetes", in NA - Advances in Consumer Research Volume 33, eds. Connie Pechmann and Linda Price, Duluth, MN : Association for Consumer Research, Pages: 660-664. [url]: http://www.acrwebsite.org/volumes/12470/volumes/v33/NA-33 [copyright notice]: This work is copyrighted by The Association for Consumer Research. For permission to copy or use this work in whole or in part, please contact the Copyright Clearance Center at http://www.copyright.com/. The Transition to a Special Needs Consumer: My Ethnographic Journey Caused by Celiac Disease and Diabetes Lawrence Lepisto, Central Michigan University ABSTRACT wondering how on earth am I supposed to eat. It was very much a About two years ago I was diagnosed with celiac disease for life changing day for me. which the only treatment is a strict gluten-free diet which eliminate Celiac disease affects about 1 in 133 people although a all foods with wheat, rye, or barley. Then, nine months ago I was significant percentage are not aware they have the disease (Fasano found to have developed diabetes which added further dietary et at., 2003). They (referred to as “celiacs”) may be asymptomatic restrictions, blood sugar monitoring, and medications. This paper or may have symptoms which physicians may not associate with the describes, in ethnographic fashion, the multitude of changes in my disease (Lohimiemi, 2001). It is becoming more recognized but consumer behavior and offers insights into the behavior of many physicians continue to have difficulty diagnosing the disease be- other consumers who face dramatic restrictions in their diets. cause it can manifest itself in so many ways. As I was struggling to adjust to my new diet and my new life, INTRODUCTION I certainly didn’t approach this struggle as a consumer researcher. About two years ago I was diagnosed with celiac disease. However, over time I began to notice how different my consumer Celiac disease (or celiac sprue or sprue) is caused by the intake of behavior was becoming. Two and a half years have added greater gluten which limits the ability of the small intestine to absorb food. perspective to these changes and this paper will identify the dimen- There is no cure other than a strict diet which eliminates all gluten sions of consumer behavior that have changed. I will present these from the food being consumed. The challenge with this diet is that consumer behavior dimensions roughly as I became aware of them gluten is found in wheat, rye, and barley which means that I cannot over time. eat traditional bakery items (e.g., breads, rolls, pizza crust, cake, cookies), crackers, most canned soups, many sauces, beer, and Evaluative Criteria breaded items. Then about nine months ago I was diagnosed with An average consumer looks at the array of food products and diabetes which necessitated reducing carbohydrates, timing meals, evaluates them on the basis of taste, price, calories, etc. Glanz, Basil and instituting new medications, including insulin. and Mailbach (1998) noted that taste is the most important attribute As a marketing professor who teaches consumer behavior, I of food for most people. For those with celiac disease, foods must observed myself over the past two and a half years as I drastically first be evaluated to determine if it is gluten-free. Everything else is changed my purchasing, food preparation, self perception, and secondary. The problem is that so many foods contain gluten, it is other aspects of consumer behavior. While I am a sample of one, it estimated that gluten is the second most prevalent food substance in raises issues that millions of consumers face as they attempt to Western civilization (Harder, 2003). As a result I needed to become adjust to new lifestyles and priorities when confronted by diseases very focused on ingredients to which I previously paid little or other limitations introduced into their lives. There are many attention. Gluten can come in different forms: flour, rye, barley, and consumers who find that they must live on newly restrictive diets. for some people, oats. However, they are often not listed on the People with allergies, especially food allergies, find themselves ingredients in that form. They are often camouflaged as “modified avoiding certain foods or additives. Diabetes forces multitudes of food starch” or “malt” which contains barley. There are literally consumers to monitor their intake of carbohydrates. Lactose intol- hundreds of forbidden foods and ingredients ranging from brewer’s erance limits the intake of diary products. Therefore, my experience yeast to some soy saucez to some vegetable gums (Celiac Sprue presented in this paper would, in varying degrees, likely parallel the Association, 2001). Gluten might also be found in aspirin, preser- experience of millions of these consumers. Hopefully, this ethno- vatives, dental fillings, toothpaste, and colorings. To add further graphic experience can identify areas of research that lead to better confusion, “wheat-free” does not mean “gluten-free” because malt, understanding of consumers who face similar situations. To de- rye, etc. could be in the product. As a result, in a grocery store and scribe my journey, I will discuss these personal and consumer- in our kitchen, the assessment of ingredients became an obsession based changes when I first faced celiac disease and then diabetes. for me and my wife. This task of deciphering ingredients should improve with the FIRST, CELIAC DISEASE Food Allergen Labeling and Consumer Protection Act (FALCPA) I had been losing weight and I lacked energy. The ordeal of that will go into effect on January 1, 2006. In plain English food diagnosing celiac disease is often a challenge because the symp- labels must indicate if the food has one of eight major food allergens toms can vary from person to person (American Family Physican, responsible for over 90% of food allergies: milk, eggs, fish, crusta- 2003). Celiac disease is an autoimmune disease in which the body cean shellfish, peanuts, tree nuts, wheat, and soybeans. The intent attacks gluten which in turn attacks the villi, the microscopic hairs of this law is to allow consumers to more easily note if these in the small intestine which absorb nutrition. These villi atrophy problem ingredients are present in the food. resulting in nutrition not being absorbed which can affect those organs nourished by that part of the intestinal track (Jahar and Jahar Perceived Risk 2001). The only treatment is a strict lifelong gluten-free diet (Green Before my diagnosis food was something to be sampled and et al., 2001). Another symptom, which I had the pleasure of savored but after my diagnosis food was a potential danger. I had to experiencing, was months of diarrhea. Finally, my gastroenterolo- completely eliminate gluten from my diet to recover because any gist did a scope into the stomach and the opening of the small gluten would exacerbate my symptoms. I avoided restaurants for intestine which produced biopsies which found blunted villi. A new many weeks and my first visit required a phone call to the cook to blood test finally confirmed celiac disease. He gave me a few reassure me that it was indeed safe to eat in that restaurant. In an brochures, told me that I cannot eat anything with flour, barley, and incident a few weeks later, a salad dressing at a luncheon that a well- rye and sent me on my way. I remember walking out to my car meaning waiter assured me was fine, set me back for three weeks. 660 Advances in Consumer Research Volume 33, © 2006 Advances in Consumer Research (Volume 33) / 661 I now realize that cooks in many restaurants don’t even mix which are off limits so I pack my own cereals. I now have several ingredients, they merely assemble pre-made foods and they are not coolers of different sizes to accommodate trips of varying lengths. even aware of what might be in a sauce. French fries that used the same oil as breaded items would pick up gluten. Potato salad at a Stages of transition and self image family get together could have gluten. Some instant rice contains When I went from “normal” to a celiac, my self image seemed gluten but how do you know if it is instant or regular rice? to evolve, not unlike Kubler-Ross’ (1969) stages of dying. In Gradually the risk was reduced as I learned what was safe (e.g., retrospect, there were four stages of transition of my self image. most fast food restaurants use separate fryers for french fries while First, the diagnosis was not unexpected after months of assorted sit down restaurants do not), I took more food with me (e.g., gluten tests and researching my symptoms, but there was an initial period free power bars, packets of gluten-free salad dressings), and adopted of shock, disbelief, and “why me.” I loved whole grain breads and other options (e.g., bunless burgers, no sauces).
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