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  • Jean Duane
    Jean Duane
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    Adults with Food Sensitivities Living with Adults Without - A Survey and Study

      Journal of Gluten Sensitivity Spring 2017 Issue

    Caption: Image: CC--Jason Taellious

    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.


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    Soon to be Dr. Duane. I look forward to your PhD research study. Your work will likely help me feel less alone and perhaps validated. I have been living this for years (likely misdiagnosed) and painfully so for over a year as gluten the first domino led to a plethora of more food intolerances and sensitivities. Good luck.

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    Is there a way to get involved in this study? Hopefully it will also include questions regarding the stability of the relationship for the celiac and the co-habitor as well as personality traits. I think that makes a lot of difference. It is not straight forward.

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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.

  • Related Articles

    Jean Duane
    Survey for Gluten-Free Adults Who Live with Other Adults
    Celiac.com 08/18/2017 - In a recent issue of Journal of Gluten Sensitivity, we announced a research study/survey for adults who are 18 or older and living the "gluten-free" lifestyle in a household with other adults over 18. Click here to read the Survey Overview Article.
    The survey is a research study conducted by Jean Duane, PhD Student at the University of Denver. It will focus on family interactions when dealing with dietary restrictions, with the potential to increase family members' compliance. It will seek to gain insight on the perceived impact one adult's food restrictions cause in a household when cohabitating with other adults. This study has social significance because family unity in the future may rely on developing strategies for compliance to address this emerging social problem.
    Please consider participating in this survey if you are an adult living the gluten-free lifestyle who cohabitates with another adult who may or may not have food restrictions. Your responses will be kept confidential. The survey should take around 10 minutes to complete and a compilation of the results will be published in an upcoming issue of the Journal of Gluten Sensitivities on Celiac.com. As a "thank you" for participating in this survey, your name will be entered into a drawing. Four lucky winners will receive a $25 Amazon.com gift card.
    If you are interested in participating in a more in-depth interview to discuss your coping strategies, successes and struggles, you will be prompted at the end of the survey to provide contact information. Jean Duane will contact you and schedule a mutually agreeable time for the interview.
    To take the survey, please click here:
    NOTE: SURVEY CLOSED AS OF 9/18/2017.

    Jean Duane
    Relational Aspects of Food Sensitivities - Survey Half-Time Report
    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.

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    In these cases, a person likely has or gluten sensitivity. ... safe for people with celiac disease if the oats have a certification that they are gluten-free. View the full article
    Did your doctor test you for celiac disease before advising a gluten free diet?  Celiac disease can be asymptomatic and it is commonly linked to Hashimoto’s and/or Type 1 Diabetes (same genes — just a “heads up”).  If clear of celiac disease the diet might be helpful, or consider the autoimmune Paleo diet which is also gluten free.  Scripps in San Diego did a study on Crohn’s and Ulcerative Colitis patients.  Small study but they achieved a 78% remission.  They are now testing Hashimoto’s patients. The gluten-free diet did eliminate my nodules and enlarged thyroid, but I still must take thyroid hormone replacement (have had Hashimoto’s for 20 years).  Not sure if it was the diet or because I treated my celiac disease.  Calm down one autoimmune disorder and the others calm down.  That is one of my theories.  Be on the look out for autoimmune gastritis as it is also linked to Hashimoto’s and I have that too.   So, please consider going back on gluten, get tested and then treat your Hashimoto’s with a diet.    
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