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  • Jean Duane
    Jean Duane
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    Surmounting Social Situations: A Gluten Free Home?

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

    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.”

    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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    Guest Derek Thompson

    Posted

    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, 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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