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  • Jean Duane PhD
    Jean Duane PhD

    Surmounting Social Situations: Sabotage and Scrutiny Surrounding the Gluten-Free Diet

    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Autumn 2018 Issue


    Caption: Image: CC--ryan harvey

    Celiac.com 10/17/2018 - In the interviews I conducted last year, the Celiac.com viewers shared with me some disturbing stories about how others either sabotaged their gluten-free diet or how their gluten-free requirements are continually scrutinized and doubted. Here are a few examples:

    • A co-worker at my office ate a gluten-containing burrito and thought it would be funny to cross-contaminate my work space.  With his gluten-coated hands, he touched my phone, desk, pencils, pens, etc. while I was not at my desk.  I came back and was contaminated.  I had to take several days off of work from being so sick.
    • The waiter at a restaurant where I was eating dinner asked me if I was really “a celiac” or if I was avoiding gluten as a “fad dieter.” He told me the food was gluten-free when he served it, only to come up to me after I ate the dinner and admit there was “a little” gluten in it.
    • My cleaning people were eating Lorna Doones (gluten-containing cookies) while cleaning my gluten-free kitchen, cross-contaminating literally everything in it. When I noticed I exclaimed, “I am allergic to gluten, please put your cookies in this plastic bag and wash your hands.”  They chided, “You have insulted our food.  We are hungry and we will eat anything we want to, when we want to.”
    • At a family dinner, Aunt Suzie insisted that I try her special holiday fruit bread. In front of everyone around the table, she brushed off my protests and insisted that I over exaggerated my food sensitivities saying, “a little bit wouldn’t hurt you.”  

    These are but a few of an exhaustive list of situations that we regularly contend with. What can possibly be the rationale for any of this conduct?  I’m providing some recent headlines that may impact the attitudes of those we interact with and would like to hear what you think influence this behavior (see questions below). 

    • Recently, the New York Times published an article entitled, “The Myth of Big, Bad Gluten.”  The title alone casts doubt on the severity of gluten exposure for those with CD (Myth, 2015)  
    • In his political campaign, Senator Ted Cruz stated that if elected President, he would not provide gluten-free meals to the military, in order to direct spending toward combat fortification (Wellness, 2/18/16). 
    • Business Insider.com called Tom Brady’s gluten, dairy free diet “insane” (Brady, 2017).
    • Michael Pollen is quoted as saying that the gluten-free diet was “social contagion.” Further, he says, “There are a lot of people that hear from their friends, ‘I got off gluten and I sleep better, the sex is better, and I’m happier,’ and then they try it and they feel better too.  [It’s] the power of suggestion” (Pollan, 2014).
    • Jimmy Kimmel said, “Some people can’t eat gluten for medical reasons… that I get. It annoys me, but that I get,” and proceeded to interview people following a gluten-free diet, asking them “what is gluten.” Most interviewed did not know what gluten is. (ABC News, 2018).

    Do headlines like this enable others to malign those of us making our dietary needs known?  Do these esteemed people talking about gluten cast doubt on what we need to survive? 

    Humans are highly influenced by others when it comes to social eating behavior. Higgs (2015) asserts that people follow “eating norms” (p. 39) in order to be liked. Roth, et al. (2000) found that people consumed similar amounts of food when eating together.  Batista and Lima (2013) discovered that people consumed more nutritious food when eating with strangers than when eating with familiar associates. These studies indicate that we are hypersensitive of what others think about what we eat. One can surmise that celebrity quips could also influence food-related behaviors. 

    Part of solving a social problem is identifying the root cause of it, so please weigh in by answering the following questions:  

    1. How do you handle scrutiny or sabotage of others toward your dietary requirements?
    2. Please speculate on what cultural, religious or media influences you suppose contribute to a rationalization for the sabotage and/or scrutiny from others when we state we are observing a gluten-free diet? Are people emulating something they heard in church, seen on TV, or read online?   

    We welcome your answers below.

    References:


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    I've always been treated like I don't have a disease. What is hardest for people to believe it's that celiac is a disease. People don't see your symptoms. They aren't in the bathroom or don't feel good for days. It seems like it's not an acceptable disease. If you had diabetes no one would give you sugar. They'd be worried that they might kill you. People don't realize that gluten will shorten your life. What really bothers me is when people in my family are eating all these desserts and other things I used to eat. It's like they're making fun of me saying ha ha you can't have this and I can. Even if people say it's gluten free I don't eat it. I don't eat corn or rice either. My own husband will go try a little of this, it won't hurt you. That just really makes me mad. I do all the cooking at our house. Everything is gluten free and mostly Paleo. I do eat potatoes even though they're not Paleo. I try all sorts of recipes to vary my diet. Lots of vegetables and fruits. No processed food. I can and dry different things. I make my own fruit leather, dried apples etc. When I go to family dinners, I make sure I always bring something I make and can eat. I clean all the time. Before I was diagnosed with celiac, I was so tired I could barely function. I had severe anemia and thyroid problems. I never want to go back to that kind of life. If in doubt I don't eat it. Keep up the fight.

     

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    I was diagnosed with Celiac 16 years ago, am 100% gluten-free, and frequently eat in restaurants as we travel often. Upon arrival, I always ask if they have a gluten-free menu, and try to check the menu online or call beforehand. When ordering, I question the server, and chef if needed, to assure that the meal will be gluten-free, stating that it is for Celiac, medical, or allergy, whichever works, even in a foreign language.  I usually stick to a salad, meat and vegetables, bunless burger, or Mexican or Asian food (I am very sensitive but have found that soy sauce is fine; one brand actually says on the label that the fermentation process alters the gluten molecule, making it naturally gluten-free.)

    Yes, I have been glutened - I carry charcoal capsules at all times. I take 1-2 with the meal if I suspect there is gluten present, or 2 an hour later when I'm sick.  That being said, I've only been sick a couple of times in the past year.  And you can't take charcoal frequently as it also binds with the good guys, nutrients, and medications in your digestive system.

    I am annoyed at conferences when coworkers order fad-inspired gluten-free and then eat the non-gluten-free food served, minimizing the issue for the rest of us.  Or when others eat the limited gluten-free food at a potluck because they "want to try it" or "it doesn't matter".

    I have the most difficult time when I'm a guest at someone's home when they *think* they made this great gluten-free meal for me but didn't bother to read that the chicken broth they used has wheat.  I've been known to rummage through the trash to read labels, and am very cautious when eating what someone else prepares, unless they, too, are Celiac.

    So, yes, I prefer to prepare my own food, always bring something to eat, and help out in the kitchen.  That being said, we had genetic testing done - 12 of our family members have Celiac so family events are always gluten-free!

    On the positive side, I just returned from Disneyworld.  While labeled "gluten-friendly", the chefs do a commendable job of providing safe, gluten-free meal and snack options. They store, prepare and serve "allergy foods" separately. Kudos!  Another success was a week-long "UnCruise" - gluten-free meals and snacks were prepared specially for me and were excellent.

    In any case, you have to be knowledgeable, food-savvy, and your own advocate.

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  • About Me

    Dr. Jean Duane is a social scientist currently focused on researching the social aspects of food/gluten sensitivities and celiac disease. Her company, Alternative Cook, LLC produces instructional DVDs (Chocolate, Mexican, Italian and Kids' Meals), video streams (alternativecook.comBake Deliciously! Gluten and Dairy Free Cookbook and The Complete Idiot's Guide to Gluten Free Cooking Cookbook. She shows how to cook without gluten, dairy and other food-allergens. Prior to becoming a social scientist, Dr. Duane produced several spots for Comcast's Video on Demand, made television appearances on PBS and was a featured speaker at two International Association for Culinary Professionals' Conferences and at the Gluten Intolerance Group of North America's International Conference. She developed recipes for Betty Crocker Gluten Free Cooking Cookbook, for Beautiful Sweets bakery and was featured in Better Homes and Gardens special Christmas Cookies. Dr. Jean Duane is a certified chef, has an MBA, and a PhD. A researcher, cooking instructor, speaker, and magazine writer, she won Kiplinger's "Dream in You" contest in 2006.

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