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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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    I have to suggest that the crux of this thesis has to be related to the degree of reactions one gets from consuming gluten.

    If you haven't read the minimalization of cross-contamination as posted in at least two threads here on Celiac.com, they are a good read.

    In my case, my diagnosis was iffy at best and to this day I'm not sure of my Celiac diagnosis, mostly because there was no correlation between the reasons for my blood tests and Celiac.  The only test results were the TTG's that when one's test index rose above a single point, it was a 98% chance of Celiac.  In the face of this rhetoric, my doctor persists.

    However, if I have it, the only symptom I'm able to possibly attribute to the disease is brain fog, which I have had my entire life.  Other than that I can't make any definitive symptom correlations.  Been gluten-free for 9 months now as has the entire household - my boss, ah my wife (LOL), has been great and is also in agreement about the gluten-free diet.

    So I can't say that one's household should be entirely gluten-free unless the patient is absolutely intolerant, which I don't think I am.  One size does not fit all.

    BTW, my brain fog persists...

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    To Nick M.

    if you have had brain fog your entire life it would be very interesting to see what happens to you if you tried perhaps just a few weeks on a completely Gluten free regime including no gluten free cereal products either. 

    There are other possibilites you might want to consider if this does not work for your brain fog. 

    A good Cranio sacral therapist, especially if they have particular training in dealing with issues around the birthing process; or a good Bodytalk Therapist might offer alternative solutions.

    Very best wishes

     

     

     

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    We clarified this by adding: " indicates that 200 ppm, the amount of gluten permitted in European “gluten-free” products that are made using Codex wheat starch"

    Remember, the study cited is from 2007.

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    I came up with a description that people seem to understand, that when a bread roll is made into a sandwich in my kitchen, it's like someone has sprinkled rat poison all over the kitchen.

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    Comment for this person.

    It is perfectly healthy to go completely gluten free , and also without gluten free heavily manufactured alternatives.The nutrients you get from gluten free produce can more healthily be obtained from other sources without all the long list of additives that commonly occur in manufactured cereal based gluten free produce in particular.

    I am NOT saying this is easy to do and particularly with children or if you are not good at dealing with the social pressures of well meaning family or friends , or most especially if you have people living with you who have issues with mental health be it autism, dementia, mental handicap etc. Or if you have to manage on a very tight budget and are dependent on prescribed gluten-free products to make ends meet.

    It also depends on whether you have a host of other food sensitivities as well, how fit you are to manage to shop around, how isolated you are from a good range of produce choices, how much you have to stay home as a carer. 

    The range of issues to be considered is legion, and I have probably missed out on many scenarios. 

    An Aside

    There is also the real possibility that children on the autistic spectrum would be massively better without any such products either, but if you want to know more on this topic, read Anthony William’s books. 

    (I am a fully qualified dietitian with long experience of a host of nutritional issues, and who eats neither gluten nor gluten free cereal based manufactured produce now. I am not so far as I know, a sufferer from Coeliac disease, but my friend has the very severe form and I am indebted to her for a host of learning on this topic. I have witnessed the seriousness of her issues with Dermatitis herpetiformis , complete and utter debilitating exhaustion etc etc.)

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    6 hours ago, Guest Derek Thompson said:

    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? 

    I figured it was a typo although it should be corrected so newbies don't think its correct.

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    Mine is a gluten-free home (2 people). After my diagnosis, my S.O. stated he wanted to go gluten-free. We bought a new toaster. Cleaned everything off & tossed stuff. Once only he came home with a pizza. I wrapped any uneaten pieces in foil & plastic bag. Plates/utensils went in the DW. Cleaned countertops & sink with heavy duty cleaner & rinsed well. Tossed kitchen towels into washer. For reheat, I lined pan with foil & repeated clean-up px. That was the 1st & last time he brought in a gluten item. He eats out when a craving comes. I have ice-tea. He does not have any reaction to gluten, but keeps telling me the taste of regular buns & dough is no longer enjoyable. He is becoming more and more dissatisfied with what used to be comfort foods. E.g. English muffins are "not light & airy, but tough & bitter".  Pizza dough tastes "funny". I believe this to be due to the sweet gluten-free grains that I use in my biscuits & sweets. He says restaurant foods are just not as good tasting as they were years ago & the products used are poor in quality. His remark; "Your food tastes so much better than any restaurants." I discovered much lately about the "mutagenesis" of wheat and the non extra-virgin oils containing residual toxins from extraction. He is worried & no longer discusses these topics. He refuses to bring in foods with yeast (yeast is a gluten cross-reactor) saying; "Well, you can't share it with me, so I don't want it". There is one restaurant where I eat a salad (bring in my dressing) & if I question about a gluten-free item the manager allows me to review the ingredients. Found lots of cross-reactors & toxic oils many times. If he'd not gone gluten-free at home, I could not have stayed in the relationship. Near death from gluten causing severe malnutrition, causing endocrine disease, causing grave physical & brain dysfunction, eventually required major surgery. Well, one time is too many.

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    Hello. Thank you for your comment. I checked the quotation. It says, "The potential toxicity of trace amounts of gluten is still unclear. We previously showed in treated celiac disease patients that the 4-wk ingestion of 100-500 mg gliadin/d (roughly equivalent to 200-1000 mg gluten) is able to cause measurable changes in the architecture of the small-intestinal mucosa" (p. 160)

    Full reference: 

    Casts, C., Fabiani, E., Iacono, G., D'Agate, C., Francavilla, R., Biagi, F., volta, U, Accorando. S., Picarelli, A., Gesuita, R., Carle, F., Mandores, A., Bearzi, I. & Fasano, A. (2007). A prospective, double-bind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. American Journal of Nutrition, 85, 160-166.

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    Jean-

     I accidentally discovered "Glutenberg" (pun on Guttenberg?) brand gluten-free beers in Whole Foods. They are made by a company in Quebec and currently sold in 28 states, if you can track them down. (The company's web site can help, production is limited.)

     I mention this because I had my last Guinness some 18? years ago, and these folks even make a good gluten-free STOUT. Ales, lager, all sorts of decent beer. I think I've tried most of the gluten-free attempts at beer, and your husband just MIGHT find these are good enough. No, it isn't Harp, or Bass, or Sam Adams...but it is worth seeking out to try.

     FWIW.

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    21 hours ago, NickM said:

    I have to suggest that the crux of this thesis has to be related to the degree of reactions one gets from consuming gluten.

    If you haven't read the minimalization of cross-contamination as posted in at least two threads here on Celiac.com, they are a good read.

    In my case, my diagnosis was iffy at best and to this day I'm not sure of my Celiac diagnosis, mostly because there was no correlation between the reasons for my blood tests and Celiac.  The only test results were the TTG's that when one's test index rose above a single point, it was a 98% chance of Celiac.  In the face of this rhetoric, my doctor persists.

    However, if I have it, the only symptom I'm able to possibly attribute to the disease is brain fog, which I have had my entire life.  Other than that I can't make any definitive symptom correlations.  Been gluten-free for 9 months now as has the entire household - my boss, ah my wife (LOL), has been great and is also in agreement about the gluten-free diet.

    So I can't say that one's household should be entirely gluten-free unless the patient is absolutely intolerant, which I don't think I am.  One size does not fit all.

    BTW, my brain fog persists...

    The brain fog can be attributed to vitamin/mineral deficiencies, blood testing only test for the bare minimum requirements as normal, and it is not a one size fits all requirements of B-vitamins (full spectrum not just a few), magnesium, vitamin D, iron, vitamin C, vitamin K, etc. With damaged gut and digestive tract from the disease your only absorbing a percentage of what you eat or take. Like trying to fill a bucket with holes in it. It can take months to years to heal, and eating out, or small slip ups can set you back. -_- My first few years were hell in a shared house before I moved to a completely gluten free one. I still have to supplement but to a lesser degree. I take Liquid Health Neurological Support and Energy & Stress twice daily 1tbsp each, vitamin D drops, vitamin C capsules, and Magnesium Glycinate. I also eat tones of healthy fats from pumpkin seeds, flax meal, hemp seeds, walnuts (omega), almonds, brazil nuts (1 a day for selenium). Many of the seeds can help regulation serotonin, melotonin, and gaba.

    Do note the fog can also be a form of gluten ataxia, other food sensitivity, or blood sugar issues in which case you will have address accordingly.

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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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