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  • Jean Duane PhD
    Jean Duane PhD

    Surmounting Social Situations: A Gluten Free Home?

    Reviewed and edited by a celiac disease expert.

    Do people with celiac disease have a right to expect cohabitants to maintain a gluten-free home?

    Surmounting Social Situations: A Gluten Free Home? - Image: CC--Laurel F
    Caption: Image: CC--Laurel F

    Celiac.com 02/01/2019 - When I was first diagnosed, I couldn’t believe the “rhetoric” about how sensitive a person with celiac disease is. It just didn’t resonate. I remember being told at a support group by a woman I deemed at the time to be histrionic, that a plastic strainer previously used to drain gluten-containing pasta could cross contaminate me, and that microscopic crumbs on the counter could be deadly. It just seemed to me at the time that she was “over reacting.” I thought: “Nobody could be that sensitive!” Back then I continued to bake gluten-containing goods for my husband. (That was torture by the way, to make my favorite brownies for him and not eat any of the batter.)

    I made him gluten-containing bread in my bread machine. I continued to have the terrible rashes. Noticing this, my husband suggested that he only buy store-bought bread, and promised to be very careful with the crumbs. We separated the condiments, labeling the ones I used as “gluten free” with a Sharpie and storing them on separate shelves. I continued to have the terrible rashes, becoming desperate for them to go away. Somehow, in spite of his carefulness, I was getting “glutened.”



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    We decided together that we had to make the house gluten-free. Meanwhile, I developed recipes that replicated the foods we loved before – all gluten-free. I finally recovered my health because of living in a completely gluten-free home. I realized that the support group woman was right, and that a minute amount of gluten can cause me weeks of misery. Today, we do not allow gluten in our home at all, except in the bottled beer my husband occasionally drinks. Beer leaves no crumbs and is easy to contain, and it is a small concession for all that my husband does to accommodate me. 

    Many of the people I interviewed in the survey (Relational Aspects of Food Sensitivities - Survey Half-Time Report) reported that they also have gluten-free homes, but some didn’t. Those who didn’t described being regularly cross-contaminated in their own homes. Those who lived with the ever-present threat of accidentally ingesting gluten reported relationship strife. Several participants told me that gluten was the “straw that broke the camel’s back” in breaking up their partnerships. Having to dodge gluten in the one place that all of us should feel the safest compels me to contrast other diseases such as diabetes, alcoholism, and coronary heart disease with the experiences I discovered with my research of those living with celiac disease. 

    Diabetes is a life-threatening illness that requires vigilant management

    A study conducted by Rintala, Paavilainen and Kurki (2013) showed that families members living with an individual with diabetes often engage in compassionate behavior, such as urging glucose checks, offering appropriate foods and keeping a close watch for signs of hypoglycemia. The authors reported that family members consider the management of diabetes as an integral responsibility to ensure adherence. Another study conducted by Manoogian, Harter and Denham (2010) found that family members take on an attitude of solidarity to support members with diabetes. When a person declares they have diabetes, their dietary needs are typically respected. Contrastingly, when a person determines they are gluten sensitive, they are often subjected to scrutiny, suspicion, and doubt. Many participants that I interviewed expressed frustration in convincing family members of their gluten-free requirements. Whereas those with diabetes can sometimes indulge in sugar consumption, adjusting their insulin accordingly, for those with celiac disease, a little gluten is not an option. Presently, those with celiac disease do not have a reliable gluten-cancelling drug.

    Cohabitants living with a recovering alcoholic are urged to curtail alcohol in the home

    The prevailing advice for families with a recovering alcoholic is to maintain a ‘dry’ home (a home without alcohol) in order to reduce temptation and to make it less available to encourage long-term abstinence (Groh, Jason, Davis, Olson, & Ferrari, 2007). Further, to reduce feelings of isolation on the part of the recovering alcoholic, it is recommended that family social gatherings forego serving alcoholic beverages. In addition to removing all alcohol from the home, recovery centers (Addiction Center, 2018) also recommend finding ‘sober’ activities to do together, building a peer group of ‘sober’ friends and focusing on different elements of life, to help the recovering alcoholic maintain sobriety. Of course, all families handle this differently, ranging from full cooperation and support, to continuing to drink in front of the recovering alcoholic. A person with celiac disease living in a gluten-filled home is similar to a recovering alcoholic living among regular alcohol consumers. It just causes strife.

    Another disease that affects family diets includes coronary heart disease

    In a longitudinal study of nearly 200 families, McKenzie (1982) found that family compliance to the heart-friendly diet ensured success for the family member with heart disease. In fact, family compliance and adherence achieved the highest levels of success (p. 104). Many of the participants in my study reported that their families, especially extended families, did not adhere to the gluten-free diet. 

    Celiac Disease is a life-altering illness that requires vigilant, lifelong adherence to the gluten free diet

    Living in a house where gluten is present poses serious health risks for those with celiac disease or non-celiac gluten sensitivities (NCGS). Gluten crumbs and flour dust in the air affect those who are most sensitive. The risk of cross-contamination through the slip of a knife on bread makes it risky once the jar is open. Airborne gluten inhaled from cutting a gluten-containing sandwich, according to Hendricks (2013) and flour dust from baking is enough to “trigger the inflammatory cascade” for those with celiac disease (p. 52). Those with celiac disease who live in homes where gluten is the fare risk cross-contamination.

    Research by Catassi et al. (2007) indicates that 200 ppm, the amount of gluten permitted in European “gluten-free” products that are made using Codex wheat starch, “is not a safe threshold because the harmful gluten intake of 50 mg/d could be reached even with a moderate consumption (less than or equal to 250 g/d) of nominally gluten-free products” (p. 165). Further, Laurin, Wolving and Fälth-Magnusson (2002) report that gluten in small quantities can trigger relapses for those with celiac disease. Therefore, a person with celiac disease living in a home where gluten is present may present an ongoing health hazard. 

    In the interviews I conducted last year for my dissertation, many participants reported that their homes were not gluten-free. Some said they have suffered regular cross-contamination as a result become sickened on a regular basis. In a quality of life study, Peniamina, Bremer, Conner and Mirosa (2014) found that those with celiac disease reported, “Other people don’t understand about my food allergy and are uncooperative or unkind toward me” (p. 935). Is it unkind for other family members to continue to consume gluten containing foods in the home of a person with celiac disease? 

    What do you think? Here are some conversation-starter questions:

    • Is it reasonable for those with celiac disease or NCGS to request a gluten-free home – similar to the homes described above for those with coronary heart disease, or recovering from alcoholism, or living with diabetes? 
    • Someone I know recently told me that he was going to keep eating gluten in spite of the consequences because he was afraid his soon-to-be-wife would not marry him if he had such drastic dietary restrictions.  Is the diagnosis of celiac disease or food allergies potentially a relationship breaker?
    • How do you manage to stay gluten-free and un-cross-contaminated in your home? How do you assert your gluten-free needs in your household?

    Please share your experiences below and how you manage your gluten-free requirements in your home.

     

    References:

    • Addiction Center (2018). Retrieved from https://www.addictioncenter.com/rehab-questions/how-do-i-help-a-recovering-addict-or-alcoholic/
    • Catassi, C. Am JClinNutr 2007; 85:160–6. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease.
    • Fasano, A. & Catassi, C. (2012). Celiac Disease. The New England Journal of Medicine, 367(25), 2419-2426.
    • Groh, D., Leonard, J., Davis, M., Olson, B., & Ferrari, J. (2007). Friends, Family, and Alcohol abuse: An examination of general and alcohol-specific social support. The American Journal on Addictions 16, 49-55. doi: 10.1080/10550490601080084
    • Hendricks, J. (2013). Understanding inflammation. Alternative Medicine 12, 50-53.
    • Laurin, P., Wolving, M., & Fälth-Magnusson, K. (2002). Even small amounts of gluten cause relapse in children with celiac disease. Journal of Pediatric Gastroenterology and Nutrition. 34, 26-30.
    • Manoogian, M. M., Harter, L. M., & Denham, S. A. (2013). Storied Nature of Health Legacies in the Familial Experience of Type 2 Diabetes. In J. Koenig Kellas (Ed.) Family storytelling: Negotiating identities, teaching lessons, and making meaning (pp. 79-96). New York, NY: Routledge.
    • McKenzie, J. (1982). Long term cholesterol response and compliance with modified fat eating styles among families at increased risk of coronary heart disease. (Doctoral Dissertation). Retrieved from ProQuest 
    • Peniamina, R. L., Bremer, P., Conner, T. S., & Mirosa, M. (2014). Understanding the     needs of food-allergic adults. Qualitative Health Research, 24(7), 933-945. doi:     10.1177/1049732314539733
    • Rintala, T. M., Paavilainen, E., & Astedt-Kurki, P. (2013). Everyday living with diabetes described by family members of adult people with Type 1 Diabetes. International Journal of Family Medicine. doi: 10.1155/2013/967872


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    We do not have a gluten-free home but I've managed to minimize the risks by designating a gluten space in the kitchen (a small area next to the gluten toaster and isolated from the rest of our counters/working space) and by color coding kitchen tools.  The color coding started as a way to keep my then 5 year old step daughter from accidentally poisoning me.  In our house all things red are only to be used for gluten-free items.  

    Having said that, I will say I've been contaminated by ice cubes and a variety of other things along the way. My stress level gets very high when third parties get involved or when gluten is being prepared at the same time as gluten-free items.

    I don't feel like it is fair of me to require a gluten-free home even though I'd really like one. But, I also don't feel like a gluten-free diet is all that healthy for someone if they do have the option for a greater variety of foods. As with most things Celiac, there isn't much in the way of a good answer, just ways to make the best of bad options.

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    I had initially done a shared household following the rules of shared household. I even use to occasionally eat out using the list of safety questions etc. I at the time was self diagnosed. In 2016 I became very ill due to a restaurant screw up or intentional glutening. I went for my gluten challenge. After My husband and Dr determined my shared household likely was just not safe enough for me despite our due dilligence. My children have my early symptoms and when they went gluten-free in the house and the few occasions they ate gluten outside the house they realized yep they got moms gene too. They both are voluntarily gluten-free. Long story on how their Dr dropped the celiac testing ball.

    My husband can often eat gluten at work or outside the home , but other than beer he usually seeks gluten-free meals. Salads without croutons etc. He obviously doesn't worry about cc when eating out. He says he really doesn't miss it except for beer. Almost lost the desire\taste for it.

    I am more relaxed have less brain fog, ataxia, neuropathy, rashes etc. In a gluten-free home kitchen.

    I personally did not realize that I needed a gluten-free household until I had one. I am so glad I am now in one.

    My workplace I worry about a shared kitchen. However I am fortunate to have access to a separate locker to store my lunch, I do not use the fridge, microwaves, etc if I bring something warm I bring my own thermos etc.  I store a place mat I use to put on the table that I store in my locker. I have told my co-workers about my celiac and while they don't know all the intricacies of avoiding cc in general they appear to  be more tolerant to my routine, safety,  placemat , illness than previous company co workers. Some have even found it a benefit as on catered meal days or potlucks etc to politely ask if I'm going to eat my portion, and if not can they have it? I get to be the generous new employee who allows them an extra serving or treat.  Thanks to her celiac ?.

    All I ask in return is that they help support a clean area for me to safely eat in. Let's all hope they rise to the challenge to keep their new co-worker happy and healthy. 

    Edit: I have no idea once I hit submit how some words are getting changed to irrelevant ones ?

     

     

     

    Edited by Awol cast iron stomach
    Autocorrect incorrect
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    I have been doing this about 17 years!  We have 2 mixers, 2 toasters, 2 tubs or butter....that said, everything is labeled.  Most tools are washed in the dishwasher.  If not, then there are two so that one is for gluten and one is not....all items are labeled.  Storage area for gluten-free products are separate....no combining of our groceries.  My husband uses bread with gluten.  It is kept way away from the gluten-free products.  Otherwise he eats what I eat.  I have found a few places I trust when I eat out and I have had my problems with new places or places not understanding what cross contamination means.  I have a few well meaning friends who do not understand about cross contamination and I feel bad when they offer to cook, but I am afraid of the what can happen to my innards!!  I have more than a gluten issue, so explaining why I can't eat certain products is difficult.  I was asked how long I was going to be on this diet.....I had to answer.....the rest of my life!!  People don't realize how many medicines are also containing a wheat product!!!  That is a whole other issue!!!

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    Thankfully my wife is extremely supportive with eating gluten free, and we have set up our home to be gluten free.

    When I was first diagnosed, we too did not realize how sensitive my immune system was, I was still getting sick from just about everything, including the dog food, by not washing my hands after feeding them.  It seemed endless!

    Today, if we want to socialize everyone has to come to our home, and we kindly ask them not to bring anything, except themselves.

    Something else to consider is one's work environment and schedule, today I am suffering at times due to my work environment and scheduling.  Currently I am speaking with my union about this because it is getting in the way of a title change, promotion and substantial pay raise.

    This is NOT fun at all.  Grateful I know, but still makes for a life with constantly keeping your guard up. 

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    11 hours ago, Guest Marie said:

    I have been doing this about 17 years!  We have 2 mixers, 2 toasters, 2 tubs or butter....that said, everything is labeled.  Most tools are washed in the dishwasher.  If not, then there are two so that one is for gluten and one is not....all items are labeled.  Storage area for gluten-free products are separate....no combining of our groceries.  My husband uses bread with gluten.  It is kept way away from the gluten-free products.  Otherwise he eats what I eat.  I have found a few places I trust when I eat out and I have had my problems with new places or places not understanding what cross contamination means.  I have a few well meaning friends who do not understand about cross contamination and I feel bad when they offer to cook, but I am afraid of the what can happen to my innards!!  I have more than a gluten issue, so explaining why I can't eat certain products is difficult.  I was asked how long I was going to be on this diet.....I had to answer.....the rest of my life!!  People don't realize how many medicines are also containing a wheat product!!!  That is a whole other issue!!!

    We pretty much do the same for my 7 yo daughter. Separate brands of butter make it easy to distinguish. We never cook gluten-pasta  (ancient grains tastes great to me and is healthier)--we only heat gluten items very carefully on foil and eat gluten in designated areas. We wash our hands well after touching gluten. Her labs have been negative for two draws now.

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    I'm not getting any support from my mother in-law who is more and more combative when I question her menu ingredients. I've asked my husband many times if I could either bring my own food when we are invited there or we just don't go and have them over. Also not a well received list of ideas. I have symptoms every single time we go there. She refuses to take my allergies seriously and argues when I explain it yet AGAIN. It's so exhausting. My husband won't come to my defense either. Any advice?

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    I've been gluten-free for 18 years, I have a gluten-free home and I make no excuses, I don't allow anyone to bring in gluten period. I get sick too easily, we've had to stay with my parents on occasion over the past 18 years and each time I've gotten glutened from the obvious where someone didn't tell me they "borrowed" my gluten-free serving spoon for the gluten-free stuffing for the regular stuffing at Thanksgiving until after I was sick to CC from potholders and hand towels. I passed celiac on to both my kids and I'm a single mom so I don't have the issue of dealing with any non celiac's in my house but I will admit, the celiac is often a deal breaker when dating. Were seen as fussy and difficult when all we want is to eat without getting explosive diarrhea at the table! Sadly I had that happen once while eating out, I barely made it to the bathroom:( Dates seem to find it odd when I suggest a picnic in the park instead of eating out but yeah, its not worth it and they don't get that. Needless to say, I don't date much as a result since I generally won't eat out due to the risks, gotten sick to many times from clueless places.

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    46 minutes ago, Guest JChannon said:

    I'm not getting any support from my mother in-law who is more and more combative when I question her menu ingredients. I've asked my husband many times if I could either bring my own food when we are invited there or we just don't go and have them over. Also not a well received list of ideas. I have symptoms every single time we go there. She refuses to take my allergies seriously and argues when I explain it yet AGAIN. It's so exhausting. My husband won't come to my defense either. Any advice?

    This is a stand your ground issue, I started flat refusing to eat at my mothers house unless I brought my own food. You have a couple of options, keep eating just to keep the peace and suffer (that's not really an option!), go but don't eat anything or bring your own or refuse to go anymore. I don't do holidays with my parents period because I got sick every time. My aunt I can trust if she's in town, she gets it because her daughter and grand kids are celiac too and she's even stricter then I am. This is also an issue to take up with your husband, he needs to stand up to his mother for you, this is a serious issue, personally I would consider sending him back to live with his mom if he's going to act like a child rather then a man which is what he's doing.

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    The article states: Research by Catassi et al. (2007) indicates that 200 ppm, the amount of gluten permitted in “gluten free” products, “is not a safe threshold because the harmful gluten intake of 50 mg/d could be reached even with a moderate consumption.

    In the UK and Europe the safe level is set at 20 ppm - not 200 ppm. Perhaps this is just a typo in the article? 

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    6 hours ago, Guest JChannon said:

    I'm not getting any support from my mother in-law who is more and more combative when I question her menu ingredients. I've asked my husband many times if I could either bring my own food when we are invited there or we just don't go and have them over. Also not a well received list of ideas. I have symptoms every single time we go there. She refuses to take my allergies seriously and argues when I explain it yet AGAIN. It's so exhausting. My husband won't come to my defense either. Any advice?

    Politely but firmly put your foot down and decline the next invitation. This is your health we are talking about. This woman sounds toxic on several levels. If you feel like you absolutely must make an appearance, bring your own food. Again, politely explain that although she's a great cook, you MUST eat gluten free. Not doing so is not an option

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    Our home is mostly gluten free. The only things containing gluten are things my husband eats, all store bought & packaged, that I don't want to eat. He also has a separate butter tub so his crumbs don't get in my butter tub. Everything prepared in my kitchen is gluten free. It works best that way. My experience is in line with the author on this.

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  • About Me

    Jean Duane PhD

    Dr. Jean Duane is a social scientist and author of Gluten Centric Culture – The Commensality Conundrum, which summarizes a nation-wide study on understanding the social aspects of food/gluten sensitivities and celiac disease. Additionally, she wrote Bake Deliciously! Gluten and Dairy Free Cookbook and The Complete Idiot's Guide to Gluten Free Cooking Cookbook. Dr. Duane 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. 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. Jean can be reached via alternativecook.com.


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  • Related Articles

    Jean Duane PhD
    Celiac.com 04/21/2017 - Adults who have gluten sensitivities cohabitating with non-gluten sensitive adults may have a lot of unanswered questions that need to be asked. Dramatic changes in one family member's diet can have profound effects on a household (Bacigalupe & Plocha, 2015). Numerous studies document how parents and children handle everyday living when the child has food intolerances, but very few studies focus on adults living with food sensitivities. Wouldn't you like to know how other adults with food sensitivities adapt and manage over the long haul? Questions like: Does the person with the sensitivity live in fear of cross-contamination? Does the household employ methods to ensure s/he is safe? If so, what are those methods? Do the non-sensitive members of the household feel resentment? Or have they grown weary of compliance over the long haul? How adherent is the sensitive adult? Is it worth a little risk for a little pleasure once in a while? What do these cohabitating adults do to exist gracefully? These questions will be asked in a forthcoming study (on Celiac.com), and the results will be shared with viewers/readers.
    Food allergies affect 15 million Americans (FARE, 2015), which means that adults with food sensitivities have gone from being rare to more commonplace as the population ages (Norling, 2012). Dietary restrictions due to disease will soon become common in many households and this can be problematic because severe dietary constraints are positively associated with diminished family social activities (Komulainen, 2010). Studies indicate that adults cohabitating, when one has food sensitivities and others do not, could potentially result in problems between members of the household creating feelings of uncertainty and potentially less adherence to the diet.
    Regimented dietary requirements affect the quality of life when virtually every bite of food must be scrutinized before consumption. For some households, compliance may fall on the shoulders of the person who cooks. The cook in the household, caregivers, and everyone sharing the same kitchen, must be actively involved in protecting the person with the sensitivities keeping gluten-containing crumbs off the counter, out of condiment jars, thoroughly cleaning utensils, etc. (Crowley, 2012; Bollinger, 2005; Merras-Salmino et al., 2014). Of course, those living with sensitivities know there is a lot more to staying "clean and safe." Family members who share a home with someone with pervasive food sensitivities must express empathy to ensure harmony and compliance (Komulainen, 2010). However, compliance comes with a price -- every meal must be planned and cooked using alternative ingredients to avoid accidental ingestion. This takes diligence, education and ability to accomplish meal after meal (Jackson et al., 1985) especially when allergies are to ubiquitous foods such as dairy, soy, gluten or corn.
    Dietary restrictions can cause misgivings on the part of the other family members, who may feel deprived of their favorite foods, compromised with recipe adaptations, or forced to unwillingly comply with the other person's diet. On the contrary, the person with food sensitivity may feel pressure not to comply with the diet in order to conform to the other adult's culinary demands. In the Jackson et al. study, forty percent of people with Celiac disease did not comply with the diet because it was too difficult (1985). The relationship between the cohabitating adults may be further complicated as trust issues develop between the sensitive adult and the cook, if the sensitive adult suspects foods that make them sick are creeping into their diet. Other food-sensitive adults report non-adherence because it is "too much trouble" and causes "social isolation" (Coulson, 2007). Non-adherence for those with sensitivities can lead to reactions, anaphylactic shock and even to death (Lee et al., 2003). Even those who do not react immediately risk long-term illness with non-compliance.
    In my twelve years experience working with people in this arena, I have observed that dietary adherence in the household seems to go through phases. The first phase is what I'm calling the "transition" stage when a person is newly diagnosed, and everyone in the household is learning the new rules. The second stage is the "status quo" stage where cohabitants understand, and hopefully comply. Finally, the third stage is what I'm terming as 'turbulent' when other adult household inhabitants are feeling weary of compliance, may have doubts about the other's sensitivities, or even rebel. This stage may be triggered by an event that disrupts the "status quo", such as a holiday where traditional foods are expected, and where their gluten-free substitutions may not be as satisfying to the other household members. It may be triggered when the food sensitive adult decides they may be reacting to different foods than they thought before, and want to experiment with dietary changes. Dynamics between cohabitants may become turbulent during these times. After the event, the household adjusts back to equilibrium until the next triggering event, which throws them into a different part of this phase-cycle, where they may cheerfully welcome a "transition," or react with "turbulence." This cyclical pattern seems to continue as cohabitants move in and out of phases as life-events occur. One of the goals of this survey will be to determine the validity of this cycle.
    I also want to test the hypothesis that a component of household compliance may also be associated with the status of the adult who has the dietary restrictions – whether the head of the home enjoys full household compliance, or if a subordinate adult must comply while others are eating the foods s/he are sensitive to. Another factor that may affect compliance is how the sensitive adult was initially diagnosed. Did a medical doctor conduct tests? Or did they read an article, and notice that they had symptoms consistent with gluten sensitivity and decide to go "gluten free?" Does the diagnostic process affect the compliance of the other adult members of the household? There are many factors that need to be assessed in order to help those of us who have food sensitivities who are living with other adults.
    This survey/study will focus on family interactions when dealing with dietary restrictions, with the potential to increase family member's compliance. It will seek to gain insight on the impact food restrictions for one adult has on the rest of the family. This study has social significance because family unity in the future may rely on developing constructs for compliance to address this emerging social problem.
    I'll collect data for this study and then share it with Celiac.com and the Journal of Gluten Sensitivity readers in order to create awareness by thoroughly examining the lifestyle of food sensitive people, shedding light on how social influences affect dietary adherence. As a PhD student at the University of Denver, and an adult with Celiac disease and a lifetime of other food allergies, living with another adult who has no food sensitivities, I know first-hand that it takes cooperation and commitment from everyone to ensure my health. I hope the study can help others improve their quality of life with the insight gained from conducting this study. I'll be launching this study on Celiac.com.
    Thank you to Scott Adams for allowing this study to be conducted on Celiac.com.


    Jean Duane PhD
    Celiac.com 09/20/2017 - A half-time report on what we've learned about each other so far in the Relational Aspects of Food Sensitivities research.
    The study is geared toward gaining perspective on the perceived impact one adult's food restrictions cause in a household when cohabitating with other adults. It may ultimately yield strategies to address the social and emotional impact of living with food sensitivities. It aims to provide coping strategies, solidarity and empowerment to our community.
    If you haven't had a chance to take the survey, unfortunately it's not too late. If you have, thank you! More about the survey will appear in the next issue and the four lucky $25 Amazon gift card winners will be announced next month as well.
    Here's what we've learned so far:
    Ninety-six percent (96%) of those who took the survey have a diagnosis that leads them to be on a gluten-free diet. Fifty-one percent (51%) have been diagnosed for 8+ years; 28% have been diagnosed between 4-7 years, 13% between 1-3 years, 5% between 7 months and 1 year, and 3% between 0-6 months. Most began eating a gluten-free diet immediately after being diagnosed. Fifty-two percent feel that the way they were diagnosed affects how seriously the other adult(s) living in the household take their dietary requirements and 23% report that the way they were diagnosed doesn't affect the behavior of the other residential adults at all.
    When it comes to how diagnosed, 73% were diagnosed by an MD; 12% by themselves; 5% by a Practitioner, 5% by "Other;" 3% by a Naturopath and 2% by a Nutritionist. Forty-six percent (46%) report that they check in with a medical or health professional to monitor their health/diet once a year, and 21% get checkups several times a year. Most of us get our medical, health and dietary information we implement into our lifestyle from online sources (39%), books/magazines (21%) and from the MD (17%). The other 23% who took the survey get information from TV/Media, friends, and other sources. Because of the high-quality content available on websites such as Celiac.com, 87% report they are definitely not confused as to which foods are considered to be gluten-free. Sixty-percent (62%) of the respondents' report that other adults in the household are definitely not confused as to which foods are considered to be gluten-free.
    Ninety-two percent (92%) of us are not confused about what constitutes a "healthy diet." Thirty-eight percent (38%) feel they eat a healthy diet all the time, 48% eat a healthy diet most of the time, 11% eat a healthy diet sometimes, and 3% never eat a healthy diet. Our diet includes gluten-free grains 83% of the time, while 17% of us are grain-free.
    Adult cohabitants 'almost always' follow the same dietary requirements as we do in 56% of the households, 'sometimes' in 32% and 'rarely' in 12% of the households. Fifty-seven percent (57%) of us report that we eat different foods than the other adults living in the household 'sometimes,' while 22% of us do that 'rarely' and 21% almost always eat different foods. Adults with food sensitivities in 19% of the households enjoy meals prepared by another adult most of the time, 'sometimes' in 46% and never in 36% of the homes. Sixty-seven percent (67%) of those who eat meals prepared by another adult in their household trust that the meals are safe for them to eat.
    Fifty-one percent (51%) of those who took the survey report that someone else in the household prepares meals for them one to five times a week while 45% report they make all of their meals themselves. Most of us (95%) never cheat on the gluten-free diet.
    Demographics of the Respondents
    Eighty-five percent (85%) of the respondents are female and 15% are male. Ninety-two (92%) are white, most (65%) live with one other adult. Thirty-four point sixty two percent (34%) have a Bachelor's degree and 23% have a Masters degree. Household income was between $75-149K for 33% of the respondents.
    In-Depth Interview – Phase II
    For those of you who answered, "yes" to the Phase II interview (the longer-term portion of the research) and haven't heard from me yet, please be patient. I'm working with some time constraints now that fall quarter classes have begun and will be contacting some of you in the coming months to schedule a time to talk.


    Jean Duane PhD
    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?


    Jean Duane PhD
    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:  
    How do you handle scrutiny or sabotage of others toward your dietary requirements? 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:
    ABC. (2018). Retrived from https://abcnews.go.com/Health/video/jimmy-kimmel-asks-what-is-gluten-23655461  Batista, M. T., Lima. M. L. (2013). Who’s eating what with me? Indirect social influence on ambivalent food consumption. Psicologia: Reflexano e Critica, 26(1), 113-121.  Brady. (2017). Retrieved from https://www.businessinsider.com/tom-brady-gisele-bundchen-have-an-insane-diet-2017-2  Higgs, S. (2015). Social norms and their influence on eating behaviors. Appetite 86, 38-44. Myth. (2015). Retrieved from https://www.nytimes.com/2015/07/05/opinion/sunday/the-myth-of-big-bad-gluten.html  Pollan, M. (2014). Retrieved from https://www.huffingtonpost.com/2014/05/14/michael-pollan-gluten-free_n_5319357.html  Roth, D. A., Herman, C. P., Polivy, J., & Pliner, P. (2000). Self-presentational conflict in social eating situations: A normative perspective. Appetite, 26, 165-171. Wellness. (2016). Retrieved from  https://www.huffingtonpost.com/entry/ted-cruz-gluten-free-military-political-corectness_us_56c606c3e4b08ffac127f09f


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