Jump to content

Important Information

This site places cookies on your device (Cookie settings). Continued use is acceptance of our Terms of Use, and Privacy Policy.

  • Sign Up

Jean Duane

Authors (Lay Experts)
  • Content Count

    7
  • Joined

  • Last visited

Community Reputation

0 Neutral

About Jean Duane

  • Rank
    Contributor

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. 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
  2. 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?
  3. Celiac.com 01/11/2018 - Gluten-free, food allergies and celiac disease have reached the media in the form of jokes and ridicule. This is a serious development because the media influences viewer's day-today reactions to various social situations. In many ways, TV becomes a role model for social interactions. DeVault (1991) says that "an enormous body of science, literature and even humor tells us how a middle-class man and woman might 'do' family life" (p. 16). This is the fundamental reason why the media jabs about gluten-free and food allergies are so impactful. What we see on TV, we emulate in life. If 'doing gluten free' is something to be ridiculed, as with the examples below, then those of us with food allergies need to unite our voices to be heard in public forums to change this practice. An example of food-allergy ridicule is found in a scene in The Smurfs 2 when the unctuous "Corndog King" presents every child at a birthday party with a corn-dog. A concerned parent asks if the corn-dogs contain peanuts, and he says, "No, I would never use peanuts." Meanwhile, a little boy is shown eating the corn-dog just as the Corndog King recalls that they are fried in peanut oil. The parents rush to the little boy urging him to spit it out. Here is the snippet: . I think the producers thought this incident was funny. Newsflash: It isn't. This scene has been criticized on various blog sites as making light of allergies, but one criticism from a parent of a child who recently died from inadvertently eating peanuts is especially poignant. The parent said scenes like this are not funny, nor entertaining. Scenes of this nature on TV undermine the consequences of food allergies.As much as I love Frankie and Grace, the game that the siblings played in Season 3, Episode 1, called "Bud's Super Needy Girlfriend Game" is offensive. It shows them eavesdropping as Allison, Bud's girlfriend, talks about her allergies to a stranger at the art show. With each statement Allison makes, such as, "it is easier to tell you what I am not allergic to," the group takes a shot of liquor. Allison says, "and that's when I realized I have celiac disease" and the siblings laugh and take another shot. This goes on for several rounds. The siblings ridicule Allison's allergies and maladies in a very uncompassionate way, setting an example for viewers on how to respond when there is a person in the crowd who has allergies. In another episode, when Allison faints, the reaction from the siblings is, "…she always has to be the center of attention. She conjures up some kind of illness. But there's a name for it, 'Fictitious disorder.'" (For a transcript of this and similar scenes, please check out: http://thewalkingallergy.com/2017/08/grace-and-frankie-i-bet-allison-has-mcas/). These responses to Allison's physical malaise are callous and may encourage copycat behavior in real life situations. Humans are easily influenced, starting from infancy when they imitate their parents (McCall, Parke & Kavanaugh, 1977) and continue to be guided by what they view in the media, especially on TV. Ramasubramanian (2010) conducted a study to discover how stereotypes of laziness and criminality changed as a result of reflecting on TV depictions of racial/ethnic groups by white viewers (p. 109) and concludes that the ways these scenes influence opinions and attitudes is worrisome (p. 106), perpetuating stereotypes and prejudice. A study conducted by Tan and Kinner (1982) found that interracial children who watched a TV program showing cooperative, positive behavior, yielded "pro-social" (p. 654) social interactions, when compared with a control group. The impact of what is viewed on TV and how it translates to social (or anti-social behavior) has been validated. Humans imitate what they see. Similar to how racial stereotyping is reinforced by the media, so are people with food allergies who become the butt of jokes. The media is teaching unacceptable social norms disguised as humor. Disney's episode of Quitting Cold Koala (edited out after parents complained, but still on YouTube in a home-video snippet) shows the character named Stuart (who has a "five page list of dietary problems" according to his nanny) sitting at the breakfast table with other children. He is a cute little boy who wears glasses cocked awkwardly on his nose. He told the cook that he couldn't eat pancakes that contained gluten only to be attacked by other children throwing gluten-containing pancakes in his face! Here it is on: . Stuart reacts the way anyone would who has celiac disease. He says, "That's gluten!" and frantically tries to wipe it off his face. I agree with the person who put the video of it on YouTube. This is not "remotely funny. Depending on how sensitive Stuart is, he may have had to suffer through a reaction because of those mean kids. And though this segment was deleted from the final cut of the episode, several people captured videos of it so it remains on the Internet for anyone to see. It sets a sad, and arguably violent standard for how to treat the child that has special dietary needs. Huesmann and Taylor (2006) found that violent behavior on TV poses "a threat to public health inasmuch as it leads to an increase in real-world violence and aggression" (p. 393). Violence toward someone with food allergies, such as throwing pancakes at the person who has just declared they are sensitive to gluten is an example of how behavior seen on TV could be re-enacted in real-life.How do scenes like the three examples above translate into our everyday social interactions? Does the waiter who watches a scene on a sit-com ridiculing someone with food allergies doubt the customer the next day as she orders a gluten-free meal? Does the waiter play a derivation of the "Needy Game" seen on Frankie and Grace and have a shot of liquor in the back room with his waiter-buddies for every customer that orders a special meal? Ridicule in the media completely undermines the severity of celiac disease, and other food-related illnesses. I experienced a situation the may have been influenced by commercial programming recently while ordering at a restaurant. I special-ordered my salad, deliberately sitting on the end of the table and explaining to the waiter that I needed to ensure it was gluten and dairy free. I spoke quietly, but since there were only two others at the table, unfortunately the conversation stopped during ordering and the others heard me. The waiter rolled his eyes when I gave him my order, and moved on to the next person who said, "I'll take the salad 'regular' with all the fixings" in a kind of a sarcastic way that belittled my order. My dinner was spoiled because I was irked with my dinner companion, and because I was skeptical of the food I was served. This kind of slight happens all the time, and is likely because of the role models depicted on TV and other media that portrays that it is it socially acceptable to mock the person with special needs. It is hard to understand why food sensitivities trigger so much negativity. If someone says they have heart disease, they are taken seriously. Other autoimmune diseases such as rheumatoid arthritis, lupus, Hashimotos, and diabetes are met with seriousness, but gluten-sensitivities seem to be a charged 'trigger' reaction, that I believe has been perpetuated by the media. People ordering in a restaurant seem to be challenged by the waiter – scrutinized whether it is an 'allergy,' 'autoimmune response' or 'fad diet.' When did waiters have the prerogative to make that kind of decision? Where did this 'right' come from? I believe the media has perpetuated these attitudes. Nobody with special needs should endure scrutiny or ridicule. I'm frankly glad for the publicity gluten has received because it has enhanced awareness, but I am discouraged about how the media seems to think celiac disease, gluten intolerance and food allergies are a joke. Here is our call to action: When we see something offensive in the media ridiculing food allergies, we need to say something in a public forum to bring attention to this unacceptable portrayal of people with food sensitivities. Please post on social media, or on Celiac.com to create a buzz that this type of ridicule/humor is unacceptable. Perhaps by doing this, we can influence positive changes. And on another subject… the winners from the survey. A couple of months ago, a survey studying the impact of food sensitivities on adults living together offered a $25 gift card to Amazon to four lucky winners. Those are: Morgan, Angela, David and Tricia. (Winners have been notified and gift cards were sent via email.) Congratulations! And thank you for your participation in the study. References DeVault, M. L. (1991). Feeding the family: The social organization of caring as gendered work. Chicago, IL: University of Chicago Press. Huesmann, L. R., & Taylor, L. D. (2006). The role of media violence in violent behavior. Annual Rev. of Public Health (27), 393-415. McCall, R. B., Parke, R. D., Kavanaugh, R. D., Engstrom, R., Russell, J, and Wycoff, E. (1977). Imitation of live and televised models by children one to three years of age. Monographs of the Society for Research in Child Development 42(5), 1-94. Tan, A. S., Kinner, D. (1982). TV role models and anticipated social interaction. Journalism Quarterly 59(4), 654-656.
  4. 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.
  5. 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.
  6. 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.
  7. Celiac.com 09/13/2016 - Six times from 2003 – 2005, I had a mysterious full-bodied, itchy, blistery rash that landed me in the emergency room the first time, where seven doctors shook their heads. The ER physicians agreed that it was a "systemic chemical reaction" and tried to identify what I could have been exposed to. A dairy allergy was ruled out immediately since I have been completely dairy-free for twenty years. For the next three years, between hiding from the world for the ten days of intense itching and for the six weeks it took my skin to heal after an outbreak, I saw numerous dermatologists, internists, gastroenterologists, allergists and chiropractors. No one could figure out what was causing this miserable rash. I finally met the "best diagnostician" according to Denver's 5280 Magazine who told me he would figure out what was causing my plight, but that it wouldn't be fun. At that point, I was willing to take any test to identify what my enemy was. I endured ninety-eight needle sticks (who's counting?) eight skin biopsies, invasive scopes and tests for allergies, rheumatoid arthritis, diabetes, thyroid disease and a host of other procedures. The skin biopsies erroneously concluded that I had scabies. Scabies are biting mites that leave bumps on the skin. It couldn't have been mites, because my husband, who lives in the same environment, didn't have a bump on his body. There was only one test that I did not pass – elevated levels of IgG antibodies in my blood. My doctor suggested that the rash could be correlated with gluten consumption and recommended that I try a gluten free diet. After being vigilant for several months, five out of seven long-term chronic complaints, including the rash, gradually went away. Here's my understanding of the DH lifecycle. An intestine that cannot break down the protein gluten leaks it out of the intestine and into the bloodstream. The blood sees this as a foreign protein and over-produces the immunoglobulin G to attack it. The antibodies build up, and purge out through the skin causing the rash. Completely avoiding gluten eliminates the antibody buildup, and the rash. One clue that might have streamlined my diagnosis is the knowledge that the DH rash is symmetrical. If it appears on one elbow, it will appear on the other, etc. In my case, it appeared on both sides of my entire body from the neck down. Please understand, I am not a doctor and the following is not to be considered medical advice. I am sharing this to pass along a few things I've learned from personal experience, research and lectures on the subject with the hope of helping others who suffer from a chronic, pervasive, itchy rash. Initial Testing Since I had the eight skin biopsies, I've learned that immunofluroescent biopsies should have been taken of the healthy skin near the rash rather than of the actual bumps. I was never given this test. After all those tests, the elevated IgG was the only indication that gluten is the culprit. I endured what was considered the "gold standard" for diagnosing celiac disease, the upper GI scoping, and my gastroenterologist did not find any damage. I have since learned that the upper GI scoping is no longer thought to be the "gold standard" diagnostic process by many celiac experts because it is too random. If the doctor doesn't biopsy the intestines in exactly the right place, you may be deemed to be celiac-free when you actually have considerable intestinal damage several inches away from the biopsy site. Furthermore, people with DH may or may not experience damage to their small intestine. A study done in 2010 found that 67 percent of the time people with DH only have elevated IgG-TGA levels (1). My doctor divulged that there simply are not yet 100 percent conclusive tests for celiac disease. He said that the best way to be sure of the diagnosis is to observe that the chronic symptoms disappear over time by vigilantly following a gluten free diet. Residual Rashes Residual rashes can reappear for up to five years even though the person is following a gluten free diet. The accumulated antibodies purge in a histamine response (the rash) periodically through the skin. Horrible as an outbreak is, the rash is actually how the body cleanses itself of the antibodies. The good news is, rashes diminish in time with strict adherence to a gluten free diet. Ongoing Testing I've learned that the best way to monitor the healing process is to have the IgG antibodies tested once a year until they are in the normal range. The number should decline each year, which implies compliance to the gluten free diet and that residual rashes will diminish. Mine took several years to finally reach the normal range. Having IgGs in the normal range does not mean that I can ever go back to eating gluten. DH is a life-long condition controlled by a gluten-free, and often, a dairy-free diet. Some studies talk about a spontaneous remission. This is very rare. Other Triggers People who have a propensity to develop rashes need to be aware of other triggers. Iodine triggers the rash in people with DH. Seaweed, shellfish, especially shrimp and lobster should be avoided. Sushi wrapped in Nori seaweed has caused me to have an outbreak before. Watch out for thyroid medicine and water filters because both can contain iodine. Sunburns can cause rashes. If your skin is sensitive enough to get a rash, chances are, sun will irritate it and could trigger an outbreak. Stay in the shade, wear translucent zinc oxide sunscreen and avoid too much exposure. An overgrowth of Candida (yeast) can cause an outbreak. Candida is naturally present in the body. To avert an overgrowth, eliminate simple sugars from the diet. According to a study done at Rice University, 70 percent of the population have an overgrowth of Candida somewhere in their body(2) due to over-exposure to antibiotics, steroids and hormones. Women who are "estrogen dominant" may not be producing progesterone. This can happen during perimenopause and in menopause. According to the book What Your Doctor May Not Tell You About Menopause by John R. Lee and Virginia Hawkins(3), estrogen dominance causes autoimmune and histamine reactions in some people. This could be the reason that women who have eaten gluten for years without symptoms are suddenly are plagued when they are in their 40's or 50's. Pharmaceuticals can trigger rashes in people with DH. If there is a choice of two drugs and one says a side effect may be a rash, and a similar drug doesn't, opt for the one that doesn't say "rash" for a side effect. Inadvertent gluten consumption can also cause the rash. Gluten is in nearly every processed food, and in many cosmetics and drugs. Some mushrooms are even grown on gluten! Transglutaminase enzymes are used to revive aging fish and meats – to extend their shelf life and to make them look appetizing. Grocers do not have to declare that they add these enzymes because they are naturally occurring in the human body. Dr. Peter Green mentioned at a Gluten Intolerance Group conference that people with celiac disease develop antibodies to tissue transglutaminase, and that the addition of those enzymes may be causing people who are already sensitive to get sicker. The point is that even foods that are supposedly gluten free can contain small amounts of it. To be safe, test products with ELISA test strips. ELISA test strips are available at http://www.elisa-tek.com/ez-gluten/. Since these strips are so expensive, this is also a website for everyone who uses them to post their results. I have learned a lot by reading this forum. Day-to-Day Life The longer I have been gluten free, the less tolerant my body has become. I've heard this anecdotally from others following the gluten-free diet. My DH is so severe, I react to even the most minor infractions. It makes eating out very difficult because cross-contamination is common and waiters are not always aware. I have a little test for waiters to decide whether to trust them to bring me a ‘safe' meal. I order a club soda with lemon before I order food. If the soda comes with lime, I know this waiter is not listening, and will be more likely to bring me something that could contain gluten. In restaurants that flunk my club soda test, I play it safe and order salad, a fruit plate or steamed vegetables. I've been to restaurants that tout a gluten free menu, only to be presented with a laminated disclaimer saying they are not liable for cross-contamination or inadvertent gluten after I order. How can anyone enjoy a meal with that kind of disclaimer? Not to mention the disruption of the conversation with your meal-mate when presented with a disclaimer card. It can be a little embarrassing! The most frustrating aspect of living with this is when accidental infractions occur. In November 2011, I wasn't feeling very well, so I took an aspirin and went to bed. Ten days later, the rash started appearing. It was a very bad rash, and I had to wear gloves to cover my hands that had doubled in size. I could not figure out what I had consumed that had gluten in it. My home is gluten free! I thought perhaps a product that I habitually used changed ingredients, so I read all the ingredients of everything in my house. Using the ELISA test strips, I tested 44 different products – foods, pharmaceuticals, over-the-counter drugs, cosmetics – everything that came in contact with my skin, or that I ate. Nothing I tested contained gluten. Then I remembered taking the aspirin. I tested it, and it contained gluten! I read the ingredients, the label said "Inactive ingredient: starch." It did not say what kind of starch. This happens in binders in pharmaceuticals too. The ingredients of pharmaceuticals will say "starch #3," and further investigation reveals this can alternate between wheat, tapioca, corn or potato. This means every time a prescription is refilled, it must be tested to be sure that particular batch wasn't made with wheat starch. I was in a car wreck and had to be taken to the emergency room. My sternum was broken, and I needed pain medication. The nurse offered me a pill and I asked if they would please make sure that it was gluten free. The nurse said, "pharmaceuticals are gluten free." (I've had pharmacists tell me this too – but as mentioned above, it is not true!) I said, "The reaction I get from consuming gluten is worse than the pain of this broken bone. Would you mind checking?" The nurse came back 30 minutes later and told me the pill did, indeed contain gluten. I went home in the middle of the night without any pain medication. I found a website the next morning that lists all gluten free pharmaceuticals, and asked my doctor to call in the specific brand of pain medication. The website is http://www.glutenfreedrugs.com. I have learned to keep a bottle on hand at home, and when I travel in case something like that ever happens again. I really wanted to eat the gluten free oats, so in 2009, I decided to go completely grain free for three months to cleanse myself for the "oat challenge." Then I made some oatmeal cookies with the gluten free oats. I took one bite, and waited ten days. Sure enough, the rash appeared on my legs. Through this experiment, I learned that I am not tolerant of even some "gluten free" foods. Through my studies of alternative diets and trying to discover the optimal way to eat to improve health, I have learned that a diet centered on eating vegetables, fruits, beans and some nuts and seeds improve the autoimmune system. Once the immune system is restored, (after strict adherence for several years), I've been told that it may be possible to undergo gluten desensitization under doctor's supervision. Locating a credible doctor to do this may be tricky, and deliberately exposing myself to gluten would take a lot of courage. However, I am considering this down the road with the hope that if I am inadvertently exposed to tiny amounts of gluten, I won't suffer through another rash. Since my reaction is so severe, I asked my doctor to write an undated letter on his letterhead "To Whom It May Concern" that states my reaction to gluten. I take this with me whenever I travel, just in case I was ever hospitalized, I could show the staff a letter from a bona fide medical doctor stating the severity of my situation. Without a letter, I am not sure if anyone would adhere to the strict gluten free guidelines I need to follow. Rash Remedies In those dismal three years before I was diagnosed, I was given mega doses of steroids, antibiotics, antihistamines, countless prescription creams, gels, histamine blocks, anti-viral drugs, anti-fungals and offered Dapsone. Since it took years to diagnose, well-meaning doctors offered a smattering of drugs to see what might work. Most of the drugs listed above were not the right medicine for DH. Steroids proved ineffective. Antivirals and antifungals did not work either. Dapsone is commonly given to people with DH who are not able to adhere to a gluten free diet. It is a strong drug originally given to lepers and has severe side effects. I'd rather live the gluten free lifestyle than take Dapsone. Once diagnosed, the two drugs that worked for me to ease symptoms for outbreaks were Zantac and liquid Hydroxizine. I am told that Zantac is a histamine block. It helped to reduce the number of itching days from ten to eight. I was also told to take it as precaution, if I felt I had inadvertently eaten gluten to thwart off an outbreak. I took the liquid hydroxizine around 4:00 o'clock in the afternoon when the histamines are highest, to ease the itching through the night. An un-exotic over-the-counter remedy that works is the clear calamine lotion from Walgreen's. There were days that I dreamed of taking a bath in that wonderful stuff! Another remedy recommended by a DH friend is a product made by Bayer called Domeboro Astringent Solution. It is a powder that is mixed with water and applied with a cloth to the affected area. It is said to give relief from the itching for several hours. Fluocinonide gel .05 percent is another remedy I have heard helps with the extreme itching. Fortunately, I have not had an outbreak since I learned about this remedy. Ever Onward Though my doctor recommended the gluten free diet, he didn't tell me how to do it, and I found there was a lot to learn! Luckily, during that time in the midst of outbreaks, I was attending cooking school. The school was not gluten free, but I took all of the methods and lessons home and converted everything I learned to be allergy free. The diagnosis and certification from the school launched me on an epicurean adventure and changed the course of my life. I started the Alternative Cook to help others who want to eat safe, delicious foods. If you are suffering with an incredibly itchy, pervasive rash, or know someone who is, consider that gluten could be the offender. Celiac disease is much more prevalent in this country than once thought. If you need moral support with DH, I'd love to hear from you. Sources: Dahlbom, Ingrid, Korponay-Szabo, Ilma R, Kovacs, Judit B, Szalai, Zsuzsana, Maki, Markku, Hansson, Tony. "Prediction of Clinical and Mucosal Severity of Coeliac Disease and Dermatitis Herpetiformus by Quantification of IgA/IgG Serum Antibodies to Tissue Transglutaminase." Journal of Pediatric Gastroenterology and Nutrition. Vol. 50(2), February 2010, P 140-146. "Biologists ID Defense Mechanism of Leading Fungal Pathogen. Psych Central. June 25, 2004. http://psychcentral.com/news/archives/2004-06/ru-bid062504.html. Lee, John R., Hawkins, Virginia. What Your Doctor May Not Tell You About Menopause. Mass Market Paperback. September, 2004.
×