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  • Jean Duane
    Jean Duane

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

      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 went to eat at a normally safe place to eat and ordered my usual. I explained that I had celiac and needed the gluten-free bun and special care as to not contaminate my food. The waitress handed me my food and I noticed it looked different and brought it up. She said they had switched bread brands. I believed her and ate my sandwich. Come to find out, it was not gluten-free. I was sick not even 10 minutes after my first bite and it lasted for days. Come to find out, the waitress was trying to see if I was being serious or just another hipster. 

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    I assume most places are not safe. Order carefully and usually eat the same things. Broiled fish, broccoli and rice.  So far so good. I can at least be with friends. Eat out very little. Generally 1 meal a week. Only restaurant in my area that is accommodating is Legal Seafoods, a chain on the East Coast. The Japanese restaurant I go to is ok if I stick to Vegetable Maki or Yaki Soba. On a couple of occasions I have tried to explain about my need for a GFD. Successful with only one restaurant.

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     When I go to a restaurant I don't know, I let the hostess know that I have celiac disease and that I need  my food to be gluten-free for medical reasons and ask if they can accommodate that.  If there is any hesitation, I leave before I am seated.  If I am going out with others, I review menus on-line or call ahead of time to find out where I stand.  All along the way I tell wait staff up front that this is celiac disease and medical and ask them for their help in making choices.  If they are clueless, but well-meaning, I will ask them to run my questions by the chef and will take extra precautions to be safe.   If  it later becomes apparent that I have had a gluten exposure, I call them to let them know.   How will they learn without feedback?   Usually the places I go to do try and do want to be accommodating.  

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    My mom repeatedly poisoned me, so my husband and i started doing all the cooking when we visited; made a big deal of cooking special dishes.   My dad and brother were helpful, since moms cooking is terrible, and ours is, frankly, very good!   

    I am very lucky my husband has a good 'school teacher' look, and used to work in the restaurant industry.  If a server balks, or my food comes wrong, he handles it.  I don't get why people do this; it defies logic.   We are blessed with wonderful friends.  

    Unfortunately, Medical professionals often question me, but since i spent way too much of my childhood urping, i don't put up with much anymore; 62 years of perspective helps.

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    I go out to restaurants with my family, but do NOT eat.  I order an iced-tea.

    I either eat a bite before going out or simply skip the meal all together.

    In the past, repeated exposures to gluten resulted in 16 bowel movements a day.

    Severe malnutrition generated other major health issues & ended in surgery.

    Restaurants?  That's a big No Thank you! 

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    Sadly my problem is my own mother who absolutely refuses to believe some gluten is not okay. Every single holiday involving a meal turns into a fight that leaves me crying, frustrated, angry with myself and the disease and alone. I've tried to get around the fighting by inviting my mom and step dad to my place for dinner but she says no......step dad wants apple pie or she wants the turkey stuffed. We just got past Thanksgiving and I'm already dreading Christmas. It'll be another holiday where I sit at home by myself. What really sucks is that if my step father had Celiac disease or, if my father was still alive and had the disease, mom wouldn't insist they eat a turkey with stuffing made from bread containing gluten. What's really stupid is that this past holiday, I just about agreed to eat moms gluten-loaded turkey just so I could then vomit all over her dining room table to prove to her how wrong she is in her beliefs. The only thing that stopped me was that I couldn't afford the weight loss. I only have one restaurant I can trust should I want to eat out. I find it sad I can trust strangers in this restaurant more than I can my own mother.

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    One more thing. My mother doesn't take the disease seriously. In her opinion, she doesn't see why I Can't suck it up during the holidays since I'll just have at worst a stomach ache. She's talked to a couple of people (or so she says) that are maybe gluten sensitive and she relates what these people say to what Celiacs go through. I truly feel many people do not understand the difference between gluten sensitivity and Celiac disease and like my mother, refuse to educate themselves. I find it sad that Celiac disease is only taken seriously by those who suffer with it. 

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    1 hour ago, Karen P said:

    One more thing. My mother doesn't take the disease seriously. In her opinion, she doesn't see why I Can't suck it up during the holidays since I'll just have at worst a stomach ache. She's talked to a couple of people (or so she says) that are maybe gluten sensitive and she relates what these people say to what Celiacs go through. I truly feel many people do not understand the difference between gluten sensitivity and Celiac disease and like my mother, refuse to educate themselves. I find it sad that Celiac disease is only taken seriously by those who suffer with it. 

    Karen P 

    I am sorry to hear the pain and isolation you feel at your mother's treatment of you. I wish for better. One of the people in life we should be able to count on to be in our corner is mom. It always hurts when we find when she is not regardless of reason. The kicker is this is genetic she denies you got it from her or biological dad. Ouch !

    My 2cents don't try to rationalize your mother's minimization of celiac or NCGS it doesn't matter if someone is a silent asymptomatic celiac, a full blown all 300 symptoms, or a 60 symptoms NCGS person. She would minimize them all.

    What she can choose to do, but fails to do for reasons that only pertain to her her alone is to make an effort to accept her daughter and support her. Period. She fails!

    There is not much more I can say to change this for you. 

    Someone wise I know would simply say your mom is weak. 

    With that Karen P be strong !

    knowing you are strong despite your moms treatment of you. It is her weakness and fear . in time maybe my words will help you reframe this .

    best wishes 

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    I found the Jimmy Kimmel video very telling.  It exemplifies what happens to society's point of view when something becomes 'trendy' whether there is a genuine problem some people face or not.  It can be bad enough when popularity of a diet/fad/idea/opinion causes harm to businesses and industry, but it's even worse when it gets down to an individual's health and what amounts to casual poisoning.  The saddest part?  I get the outlook of some of the public when you see videos like Kimmels.  These people have jumped on a bandwagon without any idea of what the wagon is, where it's going, or what its purpose is.  Of course, it's not okay to lie to someone about the ingredients of their food - don't misunderstand me - but I can understand the irritation.  Wait staff, kitchen staff, etc, go to a lot of trouble for some of us and special requests can really disrupt a kitchen and restaurants flow.  I imagine they hear a lot of bad information and bad or ignorant opinion and thoughts. 

    I try to make a point of letting them know, like some others here have said, that I have a medical issue.  A disease.  Sometimes I can tell that saying 'autoimmune' or 'allergy' is the ticket to get serious attention.  I don't like that, though.  At times, it seems I sound self-important when I go that route.  If it keeps me from getting glutened I'll do it.  What a shame we have to deal with that sort of jaded disbelief.

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    I too have problems with sister about Celiac Disease Last year for Christmas I brought my gluten free turkey and Sweet potatoes to my family's Christmas dinner and while we were eating my sister asked a lot of questions about the disease but when I explained about the disease she said how come now I can't have gluten when I was younger I didn't have this and if she had this disease she still eat gluten because of all restrictions being on gluten free diet I told her even if I eat a small amount of gluten I become very ill and it takes me about a week to recover As restaurants go the wait staff and cooks have been very accommodating to my requests where I live The other day at my church we had Potluck dinner and town hall meeting The other church members would tell if there dish was gluten free or not For dinner I had chicken salad and cheesy potatoes and orange salad and two little candy bars But was first diagnosed K bad a problem eating food that wasn't gluten free but I haven't had a episode of gluten since 05/18 which I'm very happy about

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    I don't consider any of the people mentioned in this article "esteemed".  more like self-important "celebrities" that feel the need to comment on everything out there to keep themselves relevant-  including the politicians who will say anything to get a vote.  Having said that, sadly there are a lot of people that pay attention to all that hoopla and hyperbole and believe what they are told and jump on the bandwagon- whether it is a diet bandwagon or an "anti-diet" bandwagon.  And in the end, if a restaurant claims they offer gluten free or a person says they need to be gluten free, the reason doesn't matter.  You either offer it or don't and if you feel like the person is being inconsiderate or demanding, then you should not be in business or you should state up front you dont offer gluten free.   It is no one's business and in a world where people claim to be tolerant and understanding, they are only tolerant or understanding of those with the same beliefs.  

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    I have dealt with all of the above! We have come to the conclusion that eating at home is the best. I know it is not fair to my husband but, I like the others have been sick for days after eating a "so called" gluten free meal. I have also been asked if this is a medical issue or just a dietary choice? I grew up on a farm and we grew wheat, corn, soy beans and other crops. Why in the world would I not want to eat what my family grew? Even though the restaurant says it serves gluten free, if their kitchen is not gluten free, then your meal is NOT going to be gluten free, period. There is one very notable restaurant that advertises a gluten-free menu. They even say their pasta is cooked in non-gluten free pasta water, meaning, they throw the gluten-free pasta in an already used pot of water! If you don't bother to read the SMALL print then you are in trouble. I don't know if others are as sensitive as I am, but I have to use gluten-free soap, shampoo, toilet tissue(that one is a bit more tricky), even hair color.

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  • About Me

    Jean Duane, Alternative Cook, LLC produces instructional DVDs (Chocolate, Mexican, Italian and Kids' Meals), video streams (alternativecook.com) Bake 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. Ms. Duane has produced several spots for Comcast's Video on Demand, made television appearances on PBS and has been a featured speaker at two International Association for Culinary Professionals' Conferences and at the Gluten Intolerance Group of North America's International Conference. She has developed recipes for Betty Crocker Gluten Free Cooking Cookbook, for Beautiful Sweets bakery and was featured in Better Homes and Gardens special Christmas Cookies. Jean Duane is a certified chef, has an MBA and is pursuing a PhD at the University of Denver focusing on the social aspects of food. A regular cooking instructor, speaker and magazine writer, she won Kiplinger's "Dream in You" contest in 2006.

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    Celiac.com 11/28/2016 - The title of my article might seem a little shocking to most of the celiac community. Why wouldn't I want restaurants to offer high quality, safe meals to those who suffer from celiac disease or from non-celiac gluten intolerance so they could also enjoy dining out with their family and friends like everyone else? It's not that I don't want restaurants to offer gluten-free options: I do. But, I want them to be high quality, high integrity, and offered by a properly trained and knowledgeable staff. Otherwise, I truly don't think your establishment should bother offering gluten-free options to your diners and guests.
    The truth is that genuinely gluten-free dishes should be more than just replacing a bun, or using a corn or rice version of pasta in your dishes. Claiming to be "gluten-free" or "celiac-friendly" needs to go much further than just claiming such or simply swapping a product for your gluten-free diner.
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    There are so many sources of cross-contamination that are simply not explored, or may not even be known by a dining establishment. Unless a typical restaurant or bakery staff is well-versed and knowledgeable in what to look for, the questions to ask, and the proper procedures that will ensure a safe dining experience for gluten-free guests, and until all of the sources of cross contamination are explored and eliminated, it is highly doubtful that a gluten-free dish is truly gluten-free at all.
    With the FDA's recent updates to the gluten-free standard, restaurants, bakeries and dining establishments need to start following suit. Anyone offering a gluten-free meal should be aware that not only are their customers expecting adherence to the 20ppm of gluten (or less) standard that has been accepted as the standard for certifying something is gluten-free, but that the FDA expects their dining establishment to live up to that standard.
    As with any product that comes to market with a claim, restaurant menus are subject to abide by the same guidelines. For instance, if you claim something is "reduced fat", then it better, by all means, be reduced fat from the original version of the same dish. The same principal applies to gluten-free dishes with the standards taking full affect in the summer months of 2014. If your restaurant claims it is gluten-free, then it better be gluten-free, and not just "assumed" gluten-free.
    Living in blissful ignorance can not be an option for restaurants or for any establishment offering gluten-free products. As with any other food allergy or intolerance (FAI) there can be dire consequences for not adhering to procedures for safe preparation and service of food. Not to mention the damage that can be done to an establishment's reputation should the word get out that their integrity or food knowledge is questionable.
    Personally, I believe restaurants have a lot to gain in terms of offering gluten-free meals, or menu options in their establishment. I believe that restaurants who establish—and enforce- gluten-free procedures to eliminate cross contamination, accidental exposure, and provide training to their staff can benefit greatly in terms of business growth and satisfied repeat guests and their referrals from gluten-free diners to both gluten-free dieters and "traditional" diners alike.
    Gluten-free diners, just like all diners, place a great deal of faith and trust in people who prepare their meals at restaurants, diners, bakeries and cafes. With this great measure of trust being established at the first encounter with a restaurant guest, it pays to educate everyone from host/hostess to head chef on the proper way to handle gluten-free meals, and for that matter, all FAI's.
    That is why I recommend that until you are completely certain that your food is gluten-free, and that your staff is in complete compliance with your establishment's gluten-free policy, it is probably better that your establishment NOT offer gluten-free menu options. Those with gluten intolerance and celiac disease would appreciate your honesty and your integrity in doing so. The good news is that we'll be willing to become your dinner guests when you can honestly say that your kitchen staff, servers, management team, and even your host or hostess are educated, trained, and 100% on-board with providing a safe gluten-free experience for all of us.
    Trust and integrity go a long, long way for those of us with special dietary needs.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?

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