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  • Jefferson Adams
    Jefferson Adams

    Has the Gluten-Free Food Craze Made Things Worse for People with Celiac Disease?

      How has the influx of new gluten-free products in the last few years changed the experience of people with celiac disease?

    Caption: Image: CC--Douglas Taylor

    Celiac.com 10/30/2018 - Products with “gluten-free” were unknown just 20 years ago. Now, driven by new labeling standards and demand that far exceeds those on medical diets, the market for gluten-free foods is expected to hit $2.34 billion in sales by 2019. That’s more than double the 2014 level. How has the influx of new gluten-free products in the last few years changed the experience of people with celiac disease?

    A team of researchers recently set out to investigate how the recent proliferation of the gluten‐free industry has affected individuals living with celiac disease, with a primary focus on their social lives and relationships. The research team included J. A. King, G. G. Kaplan, and J. Godley. They are variously affiliated with the Department of Sociology, Faculty of Arts, University of Calgary, Calgary, Alberta, Canada, and the O’Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada.

    The team employed interpretive phenomenology for study design and analysis. Team members held semi‐structured interviews with 17 adults with clinically diagnosed celiac disease in Calgary, Alberta. They recorded the interviews and transcribed them for analysis.

    These 17 Canadians living with celiac disease reported that they perceive the growth of the gluten‐free industry as a "double‐edged sword." Although they are grateful for more readily available, more palatable gluten‐free options, they are increasingly faced with misunderstandings about the severity of celiac disease as a perceived result of many non-celiac disease individuals subscribing to the gluten‐free diet. 

    Participants also felt they may be perceived or even perceived themselves differently, such as "high maintenance," etc. To help mitigate these social ramifications of following the gluten‐free diet, participants utilized various strategies. According to the study’s authors, simply telling celiac patients to adopt a gluten‐free diet ignores the regular challenges faced by those patients. 

    The authors of the report are calling for doctors to consider the indirect burdens for celiac patients who must adopt a gluten-free diet when making their recommendations. But how? The report says nothing about what exactly doctors are supposed consider, or what they should tell patients about the challenges of a gluten-free diet. People with celiac disease probably do need more information up front as they begin to follow a gluten-free diet, but clearly far more input and study are needed. 

    This study tells us that seventeen people in Alberta, Canada say that being gluten-free by medical necessity is both easier and more challenging than it was in the past. That it was both more manageable, but also more stressful, because gluten-free fad dieters are confusing everything. What are we to make of this?

    Talking informally with 17 celiac patients and writing up the results may not rise to the level of a solid study, and their input doesn’t really tell us much about how to improve their situation. Also, blaming the popularity of the gluten-free diet as a cause of confusion or stress in people with celiac disease could be an overreaction. 

    Remember, ten or twenty years ago when most people had nearly zero awareness of celiac disease or the gluten-free diet? That included doctors who were trying to diagnose it. To have these inconvenient misunderstandings, people must first have some idea that celiac disease exists, and that a gluten-free diet is part of it. Is it possible that, as annoying as such misunderstandings may be, they represent progress, however incremental? 

    Perhaps the annoyances are real, perhaps they are perceived. Perhaps they are a reflection of slowly rising awareness levels. But the study doesn’t tell us any of these important details.

    Again, there’s little question that people with celiac disease need more information up front as they begin to follow a gluten-free diet, but clearly more input and study is needed so that we can come up with an accurate picture of the challenges and provide the best ways to meet them.

    What’s your experience of the rapidly changing gluten-free landscape?

    Read more at: JOURNAL OF HUMAN NUTRITION & DIETETICS. First published: 02 October 2018 https://doi.org/10.1111/jhn.12597



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    I was diagnosed celiac 30 years ago. Been gluten free 30 years. Last 7 to 10 years very risky, bouts of being glutened as more production of gluten free food. I do try them. I pray someday that products with gluten free labels Will truly be gluten free with no traces of gluten!! 

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    I was diagnosed in 2007 and had food fear and fear of starving right away. I found because I am Silent I could not rely on having symptoms to tell me that something labeled gluten free was not. At that time legislation for testing had not been ratified. So I still contacted farms and manufactuers to double and triple check there was no cross contamination. I have my favorites I stick to because I negative test results for auotimune response for 11 years. I still check every labels though because ingredients change without notice.

    As far as this article goes I am thankfull for the movement because it has put the disease and problems with gluten more into conversation even if some of those are to make jokes against gluten free in movie and tv shows. I see that as truth of what uneducated people are thinking about gluten free. I tell everyone I meet I have Celiac and explain it to them whether they want to know or not. Someday maybe thier friend or family member may be diagnosed and it wil help them.

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    Restaurants: Randy's in Red Wing, MN. I have been driving past it for years on my way to the Twin Cities and always on their billboard they advertise the availability of gluten-free bread. Last weekend Red Wing was my destination so I decided to try them out. I ordered a Grill Cheese and salad bar. It's sort if an independent fast food place with really no accommodation for Celiacs. No separate grill for avoiding cross-contamination. The manager came out and said she could warm a cheese sandwich in the microwave. I should have just walked back out the door, but I didn't have time before my event. Even the things that are normally okay on the salad bar were not. The real bacon bits were crispier than I expected and they had been fried in butter on the same contaminated grill. The reality is the only ones they were catering to were the crazers. Always ask questions.

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    I agree completely that the “fad” hasn’t helped awareness and actually harmed the way many perceive me now. 

    I spent 14 years misdiagnosed and lost my designing career through it and nearly died before my endoscopy. My life was miserable but I continued to work commercials instead of movies and just put up with being very sick in between jobs. 

    A big problem is that products label the ingredients as “Gluten Free” but they are made in a contaminated environment and we still have to call to confirm. A few delis here in Houston, Texas add a disclaimer to their gluten-free sandwiches actually saying “not suitable for celiacs” and I applaud them. 

    I find a lot of co-workers have no idea that it’s anything other than a fad and some restaurants just suggest removing croutons from a salad etc and don’t pay as close attention in their kitchens to cross-contamination. So, I rarely eat out. It’s also true that I’m considered “high maintenance” by some ignorant people and I resent that gluten-free is joked about in movies and TV without ever making it clear that some of us will be very sick if we eat gluten or something contaminated. I work in film & TV so it’s even more annoying!! 

    I just watched a Hallmark movie yesterday where the lead was asked if her LA parties were different to the Oregon ones and all she replied was that “these were less Gluten Free!” And they laughed. I don’t think this is  a step in the right direction re “awareness”.  I can only think that the uneducated writer must have had a thing about trendy “fads” and thought it a cool line to add.   

    I have experienced wonderful caterers on set who take great pains to make my food “safe” and I’m truly grateful but I usually still have to explain everything to them initially. Some are very familiar with it and I am so thankful. 

    I always tell people who ask about the proliferation of gluten-free products now compared to 16 years ago (when I was correctly diagnosed) that it’s a double-edged sword. AND it hasn’t brought any prices down either!

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    I agree with the 17.

    20 ppm x 2 times a day x several days per week = too much gluten

    dining out and not bringing my own food because the restaurant has gluten-free options = many more opportunities for being glutened = too much stress

    Yes...there are more choices than there were 10 years ago, and yes, the prices are lower, and yes, textures and flavors have improved. Still, it was less socially stressful when there were fewer choices because there was less temptation to eat something - or to be invited to eat something -  that might not be gluten free enough.

    It is my opinion that the more no-gluten-added-on-purpose-offerings there are the less understanding people are about the seriousness of Celiacs maintaining a strict diet and the more likely gluten-free restaurant food is to be contaminated. 

    While it is nice to have choices, and manufactured gluten-free foods do taste better than ever, accidental exposure and social stress are worse than ever. At least this is true for me.

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    As a Registered Dietitian I am always concerned about the cross contamination issue at Restaurants. 

    I find that some restaurants offer gluten free items, disregarding cross contamination. 

    Recently at a very nice restaurant, the manager said the gluten free pasta is boiled in the same water as the wheat pasta.  I was told if I was ‘highly celiac’ ????  I could request fresh water and separate pans instead of the grill.  If I had not voiced my concerns and asked questions, my meal would have had a high chance of containing gluten. 

    Here is a perfect example of catering to the gluten free craze, with no regards to those that truly require a gluten free diet!

     

     

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    Going to a restaurant in Reno, Nv has few options.  I believe that only a restaurant owner who personally knows a genuine and knowledgeable Celiac would create the cooking practices that would protect a Celiac.  The only way to find out whose restaurants these are is indeed by asking all the right questions.  Either the personnel trained by (ultimately) the owner or the owner manager himself will be able to answer quickly and sufficiently without hesitation all the specific questions a Celiac would ask.  If, instead, you get general answers or hesitations then that restaurant is not for you. Either one telephones ahead in order to ask and gain knowledge of their answers or if you are present and they can't answer all without hesitation please do yourself a great favor and get up and leave.  Don't fall to the social pressure of being kind in return because the employee tried hard to be helpful in answering your questions.  Especially if you are older like I am.  We may not recover fully in a diet violation like we might have been able to when we were younger!

    PS  the safe restaurants in Reno are PF Changs, In and Out Burger, and Chipotly Grill.  Though there could be more I haven't yet found them.

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    I've eaten gluten-free for five years since a biopsy-confirmed diagnosis, and I guess I'm a bit more mellow about the "craze/fad".  It's gotten more products on the market, and some of the manufacturers have got the extra mile and gotten certification.  So there are a few more things available that one can realistically expect to be safe.  I'm ambivalent about the claims that modern wheat has been bred into being a dangerous food.  But I'm sympathetic to the folks who either believe those claims or want to be on the safe side.  So I have no problem with restaurants that serve "gluten free" food that they admit is not celiac-safe, as long as they make the distinction.

    Five years ago I had to read labels carefully.  I still have to read labels carefully.  That's life.  But my life is so much better after cutting out gluten that I'm willing to do read them.

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    I think the article incorrectly states "To have these inconvenient misunderstandings, people must first have some idea that celiac disease exists, and that a gluten-free diet is part of it."   I think the problems is that people know nothing about Celiac disease and assume everyone who is Gluten-free is on a fad diet.    They can't be confusing fad dieters with Celiacs when they have not idea the Celiacs exist.   I would love to see "Celiac Awareness Month" a big thing rather than another Breast Cancer awareness event.  I think unless you have been living under a rock, we are all aware of Breast Cancer.  Time to bring awareness to Celiac Disease.   My own mother seems to think it isn't real.

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    It is for sure a double edged sword... in supermarket it’s great to have more  choices, but in restaurants... some of the people just think it’s another gluten-free maniac and they don’t take it as serious as it should be.

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    My eyes have been opened to one big drawback from the 'fad' gluten-free dieters through reading these comments - the difference between products flooding the market that are marked 'gluten free' and those that are CERTIFIED gluten free.  I'm still fairly new to this.  If I see 'gluten free' I may believe it and end up getting glutened without realizing that it's actually not certified.  I have DH and silent gut symptoms for the most part.  Often by the time I figure out I've been glutened it's too late to figure out what it was with confidence.  

    Thanks for the little epiphany everyone - if we need anything right now, in my opinion, it's stronger and more clear rules and regs on labeling and defining what is truly gluten free for both the Celiacs and the fad dieters.

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    These forums help us all continue to learn and brain storm. We always have to read the packaging but more concise labeling would really help. 

    I recently became a cropper of a product I’d eaten for a few years changing either its manufacturing facility or something else. It’s a popular item on our film shoots, a tasty sweet & salty “trail mix with m&ms”. It has GLUTEN FREE splashed over the front of the packet and it’s always been a safe choice for me.  I ate a package late evening and had horrible cramps all night. In the morning my tummy was so swollen I could hardly get out of bed to go to work. Sure enough I checked the empty package and it now says: “made in a facility that also processes wheat”. My bad. I just trusted an old favorite... but we always have to be vigilant. I’m older too so it took me well over a week to fully recover from all the symptoms. 

     

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  • About Me

    Jefferson Adams earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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    Many parents reported their children have been teased or bullied because of their need to eat gluten free.  Children are called names, such as “gluten monster,” others are “beaten up,” and one child was told “to die and never come back to school.”  One mother reported the teacher made fun of her daughter in front of the class and several parents stated their children’s food was purposely contaminated during lunch.  One mother dealt with bullying by sending in fabulous gluten free treats for her son’s birthday.  Soon the children were asking for more treats and the family began having parties at their house with “great tasting” gluten free snacks, pizza, and cupcakes.
    Life Changes
    Children reported their lives have changed since they were diagnosed.  For the most part, they indicated they were healthier, felt better, had fewer stomach aches and headaches, ate more fruits and vegetables, had more energy, and were growing physically.  However, children noted they found life more challenging than before, which they attributed to the added stress and complications of needing to plan ahead so they were able to eat safely.  Many children missed school field trips, especially overnight trips, and school related camps because accommodations could not be made or parents were afraid of gluten exposure.  Children also indicated their social lives had changed and it was difficult for friends to understand.  Several children believed they now know who their true friends are.  Some children believed their lives were actually better since they were diagnosed.  They talked about being unique and special.  One boy seemed to summarize it best by saying, “It’s just food.  You’ll live.  Look at it in a positive way and educate people.”
    Parents were also asked how their lives changed after their children were diagnosed.  They describe how “drastically different,” “life changing,” and “all consuming” their life became after their children had to eat gluten free.  Some parents described a difficult quality of life, others mentioned their terror in the first year, and still others explained that “nothing is easy.”  Twenty-two percent of families made their households totally gluten free while 8% of families still have gluten in their homes but prepare only gluten free meals.  There were many reasons why families decided to have a gluten free household.  Some parents felt it was important to go gluten free to support their children, others were fearful of cross contamination, and still others decided that eating gluten free would be healthier for everyone.  Those families who did not convert to a gluten free household believed that their children have to learn to live in the “real world” but made changes such as labeling food, meticulous cleaning, and separate toasters and pantry shelves.
    One life change mentioned by almost all parents was a significant increase in the time involved in grocery shopping, meal planning and preparation, and ensuring their children will be safe.  They plan ahead by always carrying gluten free snacks with them, order online and in bulk, and put much more thought into what the family will eat.  The increase in time is spent reading food labels, traveling to multiple grocery stores, delivering lunches to their children at school, and baking and cooking from scratch.  Food is no longer an afterthought and many parents use gluten free apps to find products that are safe.  One parent estimated that she spends 20% more time planning for and raising her child with  celiac disease than she does for her other children.
    Food cost is also a significant life change for many families.  Parents mentioned their “outrageous” grocery bills, with some reporting that grocery bills doubled or quadrupled.  While some indicated they were fortunate not to have a tight food budget, others described their budgets as being “out the window” and the “nightmare” of spending a fortune on gluten free food.  One mother stated that she went to work part-time after her child’s diagnosis to pay the grocery bills.
    Parents universally agree that eating in restaurants and attending social events are life changes that are extremely difficult and problematic.  Many families don’t eat out as much and there is typically underlying worry when they do eat in restaurants.  Parents mentioned they miss restaurants they used to love, experience limited restaurant and menu choices, and are frustrated with “no kid friendly” gluten free menus.  Many parents noted their children have gotten sick after eating in restaurants.  Other families do continue to eat out, often in establishments they know they can trust, and are pleased that restaurants are more accommodating than they were in the past.
    Parents lamented that most social events involving family, friends, or organizations revolved around food.  Many extended family members don’t understand  celiac disease and the necessity of eating and living gluten free.  Attending family events was viewed as very stressful, leading to discord and arguments between parents.  Parents reported the complexity of invitations to birthday parties, especially those at pizza and fast food eateries.  Friends didn’t know how to accommodate or were fearful of making a child sick and some friendships ended.  One mother noted that it was “very lonely at first” and another stated that “disease scares people away.”  While almost all families in the study experienced these challenges at some level, others remarked at how fortunate they were to have family and friends who go out of their way to accommodate.  There are grandmothers who do gluten free baking, friends who order gluten free pizza and cake for birthday parties, and neighbors who keep gluten free snacks on hand for play dates.  
    Celiac disease was reported to bring significant changes to travel plans and destinations as well as the frequency of taking trips.  “Food issues are huge,” spontaneity is gone, and stress levels are high.  Some families don’t travel because “all the effort went into where we can eat,” while others make all travel choices based on where they can eat.  Many mothers discussed “horrible” experiences traveling and huge coolers of food that were packed.  One parent stated, “When we leave the house for a trip it’s like treading water.  I’m nervous until we get to a destination where we can eat. I try to make sure they’re full before we get in the car.”  Another indicated that “it’s more trouble than it’s worth.”  Still other families continue to travel frequently.  They plan carefully, choose accommodations with kitchens, and use gluten free apps to find restaurant options.  Some even travel world-wide to places like Australia, Trinidad, China, India, and Peru, without incident.
    Religious affiliation is also a life change affected by  celiac disease.  Church pot luck dinners and youth group snacks were mentioned as problematic, but receiving communion was the biggest challenge.  While some churches allow gluten free communion wafers, others do not.  Many parents wrestled with what decision they would make when their child was ready for first communion and some families reported that they left the church because of these issues. One family spent considerable time examining their allegiance to the Catholic faith knowing their son would not be able to fully participate.  After much soul searching the parents decided they were very devout and made the decision to follow all aspects of the church’s teachings, including forgoing birth control.  Baby number seven is on the way!
    The life changes resulting from  celiac disease affected the mothers in this study more than the fathers.  Mothers typically do more of the meal planning and preparation, grocery shopping, and child care, making them more vulnerable to the affects of gluten free eating on the family.  Mothers reported stress, depression, anger, guilt, and anxiety after their children were diagnosed.  One mother stated that she “went into mourning for months” and another reported that she was “overwhelmed” even though she is a nutritionist.  Several mothers cried during their phone interviews.  
    An unexpected life change that resulted from a child’s  celiac disease diagnosis came in the form of career changes.  Several mothers transformed or altered their careers after their children started eating gluten free.  One mother dropped her work time to twelve hours a week in order to have more time to grocery shop and cook, while another mother added part-time work to pay for gluten free food and a therapist for her son.  Two mothers entered college and became nutritionists, one opened a gluten free bakery, and one quit her job to do gluten free awareness.
    Conclusions and Recommendations for Parents
    Celiac disease brings significant life changes and challenges to children and families. Almost all the children in this study did eat gluten free, both at home and at school.  However, most children pack their lunches and only a small percentage of children have a 504 plan or IEP.   celiac disease does have an impact on children’s academic performances and experiences, especially for those children who have extreme sensitivity to gluten.  In addition, eating gluten free brings profound social challenges and life changes for children and families and the potential for mental health concerns.  Mothers, in particular, are significantly impacted by their child’s diagnosis and some experience stress, anxiety, and depression.  
    There are a number of things you as a parent can do to alleviate challenges brought on by  celiac disease and improve the quality of life for your children, yourselves, and your families.  Schools are not fully informed about  celiac disease and many children have educational, social, and dietary needs that are not being met in school settings.  The legal implications for schools who do not meet the requirements of Section 504 of the Rehabilitation Act of 1973 are many.  Become informed about Section 504 and the Individuals with Disabilities Education Act (IDEA) and request advocacy assistance when needed.  It will be important for you to learn how to advocate for your child’s safety, security, and school success.  The National Foundation for  celiac Awareness (NFCA) is a nonprofit organization that can assist by providing excellent online resources and advocacy support.  Request that accommodations, including those related to learning, academic performance, behavior, and mental health, be written into a 504 plan that is specific to your child’s needs.  Your 504 planning meeting should include all school personnel who interact with your child, including the principal, guidance counselor, nurse, classroom teachers, food service director, and cafeteria workers.  You may find yourself in the role of trainer or informant during this meeting, as many of these individuals may not have heard of  celiac disease.  Do your homework and be prepared with handouts and website addresses that cover topics such as  celiac awareness, symptoms, the risks of cross contamination, and foods to avoid. (See Appendix)
    If your child is interested in eating school lunch, request gluten free lunches that are commensurate with lunches served to typical children.   Ask for training for cafeteria staff so they can prepare a separate kitchen area with dedicated cooking utensils, appoint a staff member and alternate who will be in charge of preparing your child’s lunch, and fully understand the effects of cross contamination.  If your child chooses to pack a lunch ask for microwave access so food can be warmed at school.  Finally, request that the school store a three-day supply of gluten free food for your child in the event of an extended lockdown.  
    Your child’s safety must extend from the cafeteria into the classroom.  You can decide how you wish to share your child’s  celiac disease with the class.  Any information shared must be age appropriate.  In the elementary grades visit the classroom to talk about  celiac disease so children are well informed.  If possible, bring in a gluten free snack to share.  This is especially important if your child is being teased.  (Just be sure that the gluten free snack is especially tasty!), Children’s books are available that you can read to the class as a way to begin discussion, although most are written at a primary grade level (See Appendix).  Although some parents want to keep their child’s health issues private, sharing is critical in the case of  celiac disease because there are many things classmates can do to help keep your child safe.
    Request that gluten free classroom materials be available for your child (crayons, glue, a Play Doh substitute, cooking ingredients) and in the case of younger children, for the entire class.  The risk of contamination is great if children with  celiac disease are in a room with airborne flour or if they touch materials that have gluten and then put their hands in their mouth.  In addition, your child should never miss out on educational opportunities such as field trips, school related camps, road trip sporting events, and cooking and art projects as result of their gluten free needs.  These types of accommodations can be written into a 504 plan so you can be assured of equal educational experiences.
    Ensure that your child does not miss out on social experiences such as girl or boy scouts, church groups, birthday parties, sleepovers, and family events because they need to eat gluten free.  These experiences play a critical role in any child’s social development.  If possible, allow your child to attend such events independently, especially as he/she gets older, so he/she is able to make a successful transition to living independently.  Call in advance to see what food will be served and, if possible, replicate with gluten free versions.  Try to reassure adults who are worried that children with  celiac disease will get sick at social events that children must learn to live in a world with gluten and avoid exposure.
    Become involved in  celiac support groups with your child to ease the burden of adjusting to a new diagnosis and dealing with the day to day challenges of gluten free living.  R.O.C.K. (Raising Our  celiac Kids) has chapters in approximately 38 states and the District of Columbia and organizations such as the National Foundation for  celiac Awareness, the  celiac disease Foundation, the Gluten Intolerance Group, and the  celiac Sprue Association also provide services and support. (See Appendix)
    Consider eating more naturally gluten free foods (lean meat, fruits, vegetables, eggs, yogurt, and whole grains like quinoa) at home to reduce food costs and improve health. There is nothing innately healthy about eating products made with rice flour, tapioca flour, and potato starch.  They are low in fiber and high in calories and carbohydrates.  Anyone who says they are going on a gluten free diet to lose weight but eats gluten free pasta and pizza will be very disappointed.  
    Finally, analyze your attitude about your children’s  celiac disease and their need to eat gluten free for life.  If you are frustrated, angry, or depressed about their diagnosis they will experience those same feelings.  In this study, it was very apparent that children who demonstrated sadness, anger, or mental health symptoms were often modeling the mind-set of their parents.  In contrast, those parents who had positive attitudes about the  celiac diagnosis (e.g. my children are healthier now and growing more, there are plenty of gluten free alternatives, etc.) had children who exhibited that same upbeat outlook.
    Appendix of Resources and Children’s Literature:
    National Foundation for  celiac Awareness, Available at http://www. celiaccentral.org/About-NFCA/19/ Celiac Sprue Association, Available at http://www.csa celiacs.info/index.jsp Celiac Disease Foundation, Available at http://www.celiac.org/ Gluten Intolerance Group, Available at http://www.gluten.net/ Raising Our   celiac Kids (R.O.C.K.), Available at https://www.celiac.com/articles/563/1/ROCK-Raising-Our- celiac-Kids---National- celiac-Disease-Support-Group/Page1.html Gluten-Free Kids: Raising Happy, Healthy Children with  celiac disease, Autism, and Other Conditions by Danna Korn Incredible Edible Gluten-Free Food for Kids: 150 Family-Tested Recipes by Sheri Sanderson Bagels, Buddy, and Me: A Story about Gluten Intolerance and  celiac disease by Melanie Krumrey The  celiac Kid by Stephanie Skolmoski Cilie Yack is Under Attack: A Story About a Boy with  celiac disease by Caryn Talty Adam’s Glute Free Surprise: Helping Others Understand Gluten Free by Debbie Simpson No More Cupcakes & Tummy Aches by Jax Peters Lowell Mommy, What is  celiac disease: A Look at the Sunny Side of Being a Gluten-Free Kid by Katie   Chalmers Eating Gluten-Free with Emily: A Story for Children with  celiac disease by Bonnie J. Kruszka

    Jean Duane
    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.

    Jean Duane
    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?

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    This  thread has been so helpful. My tests came back negative, but i experience a lot of these symptoms when  i eat wheat  and grains.  I get this severe pain underneath my left and right ribs that radiates all down my sides. It feels almost like a burning / tight sensation and almost like the inside of my stomach is itchy! Super bloated to the point of looking pregnant, chronic d, brain fog, irritability, super loud stomach gurgling, gas.  Ive just started the diet  so I'm  still quit
    I wrote you in thread asking what you found out ? My little guy is saying the same thing. 
    What did you find out about your daughter ? My son is 6 and has used the exact same sentence!! He feels like there is a bubble in his throat. He has been complaining on and off for the last year and recently it seems he complains more Ans Wants me to make a doctor appt. he had reflux bad as a baby until about 2.5 and allergies to fomula Ans my milk but since then I thought that all went away. 
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