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  1. Celiac.com 02/01/2019 - When I was first diagnosed, I couldn’t believe the “rhetoric” about how sensitive a person with celiac disease is. It just didn’t resonate. I remember being told at a support group by a woman I deemed at the time to be histrionic, that a plastic strainer previously used to drain gluten-containing pasta could cross contaminate me, and that microscopic crumbs on the counter could be deadly. It just seemed to me at the time that she was “over reacting.” I thought: “Nobody could be that sensitive!” Back then I continued to bake gluten-containing goods for my husband. (That was torture by the way, to make my favorite brownies for him and not eat any of the batter.) I made him gluten-containing bread in my bread machine. I continued to have the terrible rashes. Noticing this, my husband suggested that he only buy store-bought bread, and promised to be very careful with the crumbs. We separated the condiments, labeling the ones I used as “gluten free” with a Sharpie and storing them on separate shelves. I continued to have the terrible rashes, becoming desperate for them to go away. Somehow, in spite of his carefulness, I was getting “glutened.” We decided together that we had to make the house gluten-free. Meanwhile, I developed recipes that replicated the foods we loved before – all gluten-free. I finally recovered my health because of living in a completely gluten-free home. I realized that the support group woman was right, and that a minute amount of gluten can cause me weeks of misery. Today, we do not allow gluten in our home at all, except in the bottled beer my husband occasionally drinks. Beer leaves no crumbs and is easy to contain, and it is a small concession for all that my husband does to accommodate me. Many of the people I interviewed in the survey (Relational Aspects of Food Sensitivities - Survey Half-Time Report) reported that they also have gluten-free homes, but some didn’t. Those who didn’t described being regularly cross-contaminated in their own homes. Those who lived with the ever-present threat of accidentally ingesting gluten reported relationship strife. Several participants told me that gluten was the “straw that broke the camel’s back” in breaking up their partnerships. Having to dodge gluten in the one place that all of us should feel the safest compels me to contrast other diseases such as diabetes, alcoholism, and coronary heart disease with the experiences I discovered with my research of those living with celiac disease. Diabetes is a life-threatening illness that requires vigilant management A study conducted by Rintala, Paavilainen and Kurki (2013) showed that families members living with an individual with diabetes often engage in compassionate behavior, such as urging glucose checks, offering appropriate foods and keeping a close watch for signs of hypoglycemia. The authors reported that family members consider the management of diabetes as an integral responsibility to ensure adherence. Another study conducted by Manoogian, Harter and Denham (2010) found that family members take on an attitude of solidarity to support members with diabetes. When a person declares they have diabetes, their dietary needs are typically respected. Contrastingly, when a person determines they are gluten sensitive, they are often subjected to scrutiny, suspicion, and doubt. Many participants that I interviewed expressed frustration in convincing family members of their gluten-free requirements. Whereas those with diabetes can sometimes indulge in sugar consumption, adjusting their insulin accordingly, for those with celiac disease, a little gluten is not an option. Presently, those with celiac disease do not have a reliable gluten-cancelling drug. Cohabitants living with a recovering alcoholic are urged to curtail alcohol in the home The prevailing advice for families with a recovering alcoholic is to maintain a ‘dry’ home (a home without alcohol) in order to reduce temptation and to make it less available to encourage long-term abstinence (Groh, Jason, Davis, Olson, & Ferrari, 2007). Further, to reduce feelings of isolation on the part of the recovering alcoholic, it is recommended that family social gatherings forego serving alcoholic beverages. In addition to removing all alcohol from the home, recovery centers (Addiction Center, 2018) also recommend finding ‘sober’ activities to do together, building a peer group of ‘sober’ friends and focusing on different elements of life, to help the recovering alcoholic maintain sobriety. Of course, all families handle this differently, ranging from full cooperation and support, to continuing to drink in front of the recovering alcoholic. A person with celiac disease living in a gluten-filled home is similar to a recovering alcoholic living among regular alcohol consumers. It just causes strife. Another disease that affects family diets includes coronary heart disease In a longitudinal study of nearly 200 families, McKenzie (1982) found that family compliance to the heart-friendly diet ensured success for the family member with heart disease. In fact, family compliance and adherence achieved the highest levels of success (p. 104). Many of the participants in my study reported that their families, especially extended families, did not adhere to the gluten-free diet. Celiac Disease is a life-altering illness that requires vigilant, lifelong adherence to the gluten free diet Living in a house where gluten is present poses serious health risks for those with celiac disease or non-celiac gluten sensitivities (NCGS). Gluten crumbs and flour dust in the air affect those who are most sensitive. The risk of cross-contamination through the slip of a knife on bread makes it risky once the jar is open. Airborne gluten inhaled from cutting a gluten-containing sandwich, according to Hendricks (2013) and flour dust from baking is enough to “trigger the inflammatory cascade” for those with celiac disease (p. 52). Those with celiac disease who live in homes where gluten is the fare risk cross-contamination. Research by Catassi et al. (2007) indicates that 200 ppm, the amount of gluten permitted in European “gluten-free” products that are made using Codex wheat starch, “is not a safe threshold because the harmful gluten intake of 50 mg/d could be reached even with a moderate consumption (less than or equal to 250 g/d) of nominally gluten-free products” (p. 165). Further, Laurin, Wolving and Fälth-Magnusson (2002) report that gluten in small quantities can trigger relapses for those with celiac disease. Therefore, a person with celiac disease living in a home where gluten is present may present an ongoing health hazard. In the interviews I conducted last year for my dissertation, many participants reported that their homes were not gluten-free. Some said they have suffered regular cross-contamination as a result become sickened on a regular basis. In a quality of life study, Peniamina, Bremer, Conner and Mirosa (2014) found that those with celiac disease reported, “Other people don’t understand about my food allergy and are uncooperative or unkind toward me” (p. 935). Is it unkind for other family members to continue to consume gluten containing foods in the home of a person with celiac disease? What do you think? Here are some conversation-starter questions: Is it reasonable for those with celiac disease or NCGS to request a gluten-free home – similar to the homes described above for those with coronary heart disease, or recovering from alcoholism, or living with diabetes? Someone I know recently told me that he was going to keep eating gluten in spite of the consequences because he was afraid his soon-to-be-wife would not marry him if he had such drastic dietary restrictions. Is the diagnosis of celiac disease or food allergies potentially a relationship breaker? How do you manage to stay gluten-free and un-cross-contaminated in your home? How do you assert your gluten-free needs in your household? Please share your experiences below and how you manage your gluten-free requirements in your home. References: Addiction Center (2018). Retrieved from https://www.addictioncenter.com/rehab-questions/how-do-i-help-a-recovering-addict-or-alcoholic/ Catassi, C. Am JClinNutr 2007; 85:160–6. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Fasano, A. & Catassi, C. (2012). Celiac Disease. The New England Journal of Medicine, 367(25), 2419-2426. Groh, D., Leonard, J., Davis, M., Olson, B., & Ferrari, J. (2007). Friends, Family, and Alcohol abuse: An examination of general and alcohol-specific social support. The American Journal on Addictions 16, 49-55. doi: 10.1080/10550490601080084 Hendricks, J. (2013). Understanding inflammation. Alternative Medicine 12, 50-53. Laurin, P., Wolving, M., & Fälth-Magnusson, K. (2002). Even small amounts of gluten cause relapse in children with celiac disease. Journal of Pediatric Gastroenterology and Nutrition. 34, 26-30. Manoogian, M. M., Harter, L. M., & Denham, S. A. (2013). Storied Nature of Health Legacies in the Familial Experience of Type 2 Diabetes. In J. Koenig Kellas (Ed.) Family storytelling: Negotiating identities, teaching lessons, and making meaning (pp. 79-96). New York, NY: Routledge. McKenzie, J. (1982). Long term cholesterol response and compliance with modified fat eating styles among families at increased risk of coronary heart disease. (Doctoral Dissertation). Retrieved from ProQuest Peniamina, R. L., Bremer, P., Conner, T. S., & Mirosa, M. (2014). Understanding the needs of food-allergic adults. Qualitative Health Research, 24(7), 933-945. doi: 10.1177/1049732314539733 Rintala, T. M., Paavilainen, E., & Astedt-Kurki, P. (2013). Everyday living with diabetes described by family members of adult people with Type 1 Diabetes. International Journal of Family Medicine. doi: 10.1155/2013/967872
  2. 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.
  3. I am newly (and finally) diagnosed with NCGS. After being gluten free for a couple of months, I pushed my luck and ate some frozen vegetables that were "processed in a facility that processes wheat"... lo and behold I was sick for two weeks from eating those vegetables over the course of a couple days. (My symptoms are typically delayed by about 5 days, so it was too late to do anything by the time I became symptomatic). Since then I've obviously been avoiding anything with an allergen warning about being processed in facilities with wheat. The hardest part has been going out to eat though... Now I have to start thinking about how they cook the food at restaurants - Do they cook the food on the same surface as wheat? Do they use the same frier? Do they put bread on the plate? Etc, etc. So my question for you veterans is how you go about talking to your waiter/waitress at restaurants? What are the key questions to ask? Obviously, most people don't understand the severity of sensitivity regarding celiac/NCGS, so how do you communicate that to them well? What are some tips for going out to eat when you know there will likely not be safe options? Also, how do you tackle this socially when going out to eat with a lot of people? I suppose it will get easier over time to be the "odd one out," with all the food problems. Thanks for the help!
  4. Celiac.com 01/21/2013 - At the end of a long day of class and meetings, Morgan Hembarsky loved to come home to her four roommates eagerly awaiting her to cook their weekly meal together. Immediately when she walked through the door the most important thing to talk about was food, conversation could wait. Was it pasta with marinara and veggies or chicken Parmesan with warm rolls night? "We try to have dinner together at least once a week to catch up," said Hembarsky, a senior at Lehigh University. The women sat down to a warm meal together and gossiped about their Lehigh University professors' bad jokes and the new romantic comedy in nearby Lehigh Valley theaters. Cooking and chatting: a girl's perfect way to unwind at the end of the day. But days of cooking with her roommates are gone. Early in the fall of 2011 after months of stomach pain, Hembarsky visited a doctor and received the answer to her suffering. The culprit, celiac disease, which is a condition in which one's body cannot digest gluten and eating it damages the small intestine. Because many of the foods Hembarsky and her friends often used to make contained gluten, like pasta and bread, that meant no more pasta nights with her friends. In October 2011 she gave up foods with gluten, the killer protein found in many grains and flours. Being diagnosed with celiac forced a change to the social calendar. "It's something you learn to live with and you learn what healthy decision you need to make," said Hembarsky. Hembarsky is not alone. For many celiacs in Bethlehem, social opportunities are hindered by dietary restrictions such as not being able to eat a hamburger bun or drink beer at a tailgate because they have gluten. Instead of going out with friends, they cook individualized meals at home. Now with more people being diagnosed as gluten-intolerant or celiac – in fact one out of 133 people in the United States is affected by celiac disease, according to the celiac disease Foundation – the choices of where to buy groceries and whether one should go to a restaurant taking the chance of feeling like a burden are at the forefront of people's minds. Take Tabitha Echavarria, a senior at Lehigh University, who was diagnosed with celiac last July 1. "The biggest change in my life has been taking charge of my diet," said Echavarria. "I know 100 percent of the ingredients of everything I eat because I most likely made it from scratch. I never eat anything without asking what is in it. " Echavarria said senior year of high school she experienced persistent migraines, numb feet, chest pain and stomach aches – symptoms that other celiacs often suffer as well. After constantly changing her diet hoping to find the trigger to the pain and receiving negative blood tests, she visited every doctor she could find. "The previous year I had cut out bread from my diet ‘cause I knew something was wrong," said Echavarria. "Then eventually I just really couldn't eat ever and went to like every different doctor available to figure it out. " Now on a Friday night when her rugby teammates go out to hibachi or Sal's starving for a delicious meal, Echavarria makes herself dinner beforehand so she can still tag along to the restaurant. Going to meals with friends is no longer about the eating, it's about the company. While Echavarria still goes out to restaurants for the social aspect, other celiacs avoid eating out as much as possible. Three weeks ago, Andrew Bench was sitting at his desk at King, Spry, Herman, Freund & Faul Law Firm in Bethlehem, Pa. , with a stomach ache when he decided to stop eating out as much as possible because of the potential cross contamination. He said many restaurants in the Lehigh Valley have cross contamination even though the waiters told him that the kitchens were being careful. Flash back to when he was diagnosed as celiac a year ago. He described the feeling as a concussion mixed with sinus pressure. Cross contamination could result in the same thing, or worse. Bench recommends Tapas on Main on North Side as a safe gluten-free option. Echavarria likes Red Robin for their protein-style burgers and La Lupita for the corn-based options while Hembarsky prefers salads at Bravo and sushi at Asian Bistro. While restaurants are introducing gluten-free menus, Bench said that one slip-up in the kitchen can mean hours of stomach pain. Echavarria recalled getting sick after ordering eggs, a naturally gluten-free dish, at a restaurant. Later she found out that the eggs had pancake batter in them. Restaurants may not think about the danger to celiacs by adding gluten to a naturally gluten-free food. "I think what I am most looking forward to in the future is restaurant activism," said Echavarria. "I would just like to have the option of eating with my friends knowing I'm not going to get sick or that I'm not annoying the people that work there. "The Lehigh Valley is embracing the gluten-free movement, slowly but surely. Wegmans, Giant Food and ShopRite have gluten-free aisles that provide a wide range of options. As he was giving granola samples at Wegmans, Calvin Virgillo, operations and sales at The Granola Factory, recognized a need for gluten-free, nut-free granola, which will be available in 2013. "It doesn't matter how good our granolas if there are people who won't buy it because they're gluten free or have a nut allergy," said Virgillo. With increasing options of places to purchase groceries and dine out, the community is recognizing the gap for this niche market of gluten-free consumers. A day will come when gluten-free diners won't have to worry about missing out on social life because of their diets. Until then, Hembarsky must deal with biting into a dry, hard piece of bread and baking her own treats when she wants to socialize with her roommates. "I think bread is the hardest to be gluten-free because it [the gluten-free version] doesn't taste like bread, but a majority of them aren't that great and they come frozen," said Hembarsky. "But everything else, I feel like you don't have to sacrifice at all. "
  5. Celiac.com 03/19/2014 - The incidence of celiac disease in the United States is rising. Children with the disease attend public and private schools and educators must ensure them equal educational access and a safe environment. If you are a parent of a child with celiac disease you know the struggles you have faced in trying to make sure your child doesn’t miss out on educational experiences, school lunches, and a safe and bully-free classroom environment. To find out more about what children with celiac disease and gluten intolerance experience in school, a recent study examined the educational, social, and family challenges of children with celiac disease in pre-kindergarten through grade twelve. Phone interviews were conducted with children and their parents. One hundred thirty-eight mothers and two fathers were interviewed along with one hundred fourteen girls (70%) and forty-eight boys (30%). Fifty-three percent of these families had more than one immediate or extended family member with celiac disease and some families had as many as four children with celiac disease or gluten intolerance participate in the study. Approximately 80% of children attended public schools, while the remaining 20% attended private or charter schools or were home schooled. Eating Gluten Free Seventy-nine percent of students packed their lunch, 10% ate meals from the school cafeteria, and 11% did both. There were numerous reasons why more students packed than ate from the school cafeteria. Many school cafeterias do not provide gluten free food options, cafeteria personnel are not adequately trained to ensure there is no cross contamination, food tastes bad or is unhealthy, children prefer to pack, or there are frustrations with cost and availability. Parents and children in this study discovered that the quality and variety of gluten free options varies dramatically. Some schools require that students order meals in advance, others are on a three to five day rotation of gluten free lunch options, and others report they pay more than the price of a typical school lunch. One mother evaluates the menu, shops for gluten free substitutes, and is reimbursed by the school, while another mother creates a breakfast and lunch menu for her son and the school buys and prepares the food. There were children who got sick from cross contamination or were served food that was not gluten free. 504 Plans and IEP’s Seventy-four percent of parents who participated in this study reported their children did not have a 504 plan or an Individualized Education Program (IEP) for their celiac disease. Accommodations for children with celiac disease are assured under Section 504 of the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act. If you have children with celiac disease they are eligible for a 504 Plan which outlines the accommodations that are necessary for them to be safe and successful in school. With a physician’s documentation your children can receive gluten free lunches that are commensurate with what typical children are eating, as well as accommodations such as unlimited bathroom privileges, gluten free classroom materials, and safe access to field trips and school sponsored camps. Your children may also be eligible for services under the Individuals Disabilities Education Act (IDEA) if their disability has an impact on their ability to learn. Children with celiac disease who have a disability covered under IDEA, such as a learning disability or autism, can have accommodations for eating and living gluten free written into their Individual Education Plan (IEP). In addition, these students can also be certified as Other Health Impaired under IDEA. If your children’s celiac disease has resulted in limited strength, vitality, or alertness which negatively affects educational performance and requires specially designed instruction, they can be certified as Other Health Impaired and receive services, even in the absence of another disability. Many parents in this study had never heard of Section 504 or the Rehabilitation Act of 1973 or had not been informed by their schools about their rights under 504 or the Individuals with Disabilities Education Act (IDEA). Still others knew about 504 but had decided not to pursue a 504 plan for their child. Some parents who were trying to get a 504 plan for their children met with resistance, were told they didn’t qualify, or were begged by school personnel not to request this type of legal document. However, sixteen percent of parents reported they did have a 504 plan for their child and 4% indicated their child was diagnosed as Other Health Impaired and had an IEP. 504 plan accommodations included unlimited bathroom visits, gluten free school lunches, gluten free classroom and art supplies, notification of holiday parties, birthdays, field trips, and classroom activities involving food, microwave access, unrestricted permission to eat snacks, refrigerator/freezer use for storage of gluten free foods, washing of cafeteria tables, classmate hand washing after snacks and lunch, lunch monitoring for young children, notification of gluten ingestion, and assurance of a safe food preparation environment to avoid cross contamination. Impact of celiac disease on the Academic Experience Thirty-seven percent of the children interviewed indicated they had felt sick during the school day as a result of their celiac disease. Parents and children indicated that celiac disease does affect learning, academic performance, and behavior. Do these symptoms sound familiar? Parents reported distraction from stomach aches, brain fog, fatigue, problems with memory, processing, and attention span, and irritability, behavioral changes, and emotional outbursts. In addition, some children had excessive school absences or experienced severe neurological problems from undiagnosed celiac disease with recovery times spanning several years. Despite the effects of the disease on learning most 504 plans that exist for celiac disease do not include academic accommodations. Social Challenges and Emotional Health Children experienced many social challenges with their celiac disease. Children felt different, embarrassed, left out, and isolated as a result of the disease. Parents often described their children as “outcasts” who feel very much alone. Parents also suggested their children felt stressed by the celiac disease. Many children felt angry or sad when they were not able to eat treats other children were eating. Some children did experience sadness and depression over not being able to eat gluten and were in therapy as a result. One mother recounted that her son stated, “I can’t wait to go to heaven so I can eat wheat.” One of the biggest social challenges mentioned by parents was eating at parties and other social events. Birthday parties where pizza and cake are traditionally eaten seemed to be especially difficult. Some parents sent gluten free pizza and cupcakes with their child, others attended parties with them to monitor cross contamination, and others stated their children attended but didn’t eat. Sometimes children who attended parties said they were not hungry so they didn’t have to explain their celiac disease and others left before the food was served. Several parents noted their children received fewer invitations than before their diagnosis because friends did not want the responsibility of feeding a child who eats gluten free. Parents indicated that social events and field trips at school were equally challenging. While some schools no longer allow birthday treats or other food to be shared at school, many still do. Several mothers volunteered as “homeroom parents” and attended every party to monitor their child’s safety. Many parents kept a gluten free treat bag or cupcakes in the classroom or nurse’s freezer for their child and requested prior notice when treats were going to be shared, with varying success. While parents reported most teachers were receptive to allowing parents to send in gluten free snacks, some were not. Some parents requested a gluten free classroom environment, critical for children who are especially sensitive to gluten. Parents often wanted their children’s classmates to be aware of their need to eat gluten free and believed their children’s social status and school experiences were enhanced by sharing at the beginning of each school year, while other parents wanted an assurance of privacy. Field trips and school related camps were also very challenging for both parents and children. Several mothers have packed a week’s worth of gluten free food so their children could attend camp with the class, while some children didn’t attend at all. Other parents attended every field trip. Parents reported that field trips to places such as fortune cookie factories and Chinatown are aggravating and children sometimes stay home on those days, missing out on the educational experience. 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