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  • Kelly Carter
    Kelly Carter

    How to Help a Celiac

    Reviewed and edited by a celiac disease expert.

    When someone with celiac disease consumes gluten, the villi will be damaged and it can take up to 2 years for the villi to recover.

    How to Help a Celiac - Image: CC BY-SA 2.0--russteaches
    Caption: Image: CC BY-SA 2.0--russteaches

    Celiac.com 10/04/2019 - This is an article for friends and family to help them understand celiac disease and how they can help you.

    I understand someone in your life has just been diagnosed with celiac disease. It means their lives will change dramatically and you as part of their life should offer support. In this article, I'm going to briefly explain what celiac is and how you can help in the most basic ways.



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    Celiac disease is an autoimmune disease of the small intestine. Food is broken down into nutrients in the stomach and absorbed into the body in the small intestine. There are microscopic finger-like projections called "villi" in the small intestine that absorb the food. In celiac disease, these villi are damaged and cannot absorb nutrients.

    Celiac disease is the only autoimmune disease with a known trigger. The trigger is gluten. Gluten is a protein found in wheat, rye, and barley. When gluten is in the small intestine, the body misunderstands that gluten is a good nutrient and mounts an attack on the villi to stop the absorption of gluten. Thus leading to the damage evident in celiac disease.

    Currently there is no medicine to treat celiac disease, and once diagnosed, the loved one will always have it. It cannot be outgrown. Celiac is not caused by Roundup and has been around since 2000 BC.

    When someone with celiac disease consumes gluten, the villi will be damaged and it can take up to 2 years for the villi to recover. If left untreated, it can cause weight loss, malnutrition, failure to thrive in children, and even a specific intestinal lymphoma that is often fatal.

    One sixty-fourth of a slice of bread is enough to set off the autoimmune reaction in a celiac sufferer. So even the smallest amount of gluten is dangerous. It is a protein so it cannot be burned off of grills or pans.

    Now, for the good news, a gluten free diet is easier than you think and can be easy to manage. (I'm envisioning this going to friends or family that live outside your home. You've got to manage your home yourself.)

    The whole objective would be to keep your guest or family member with celiac safe from getting sick. Aluminum foil and plain foods are your best friend. Put aluminum foil between any surface that may have touched gluten at any point in the last six months and the food you will be cooking. Also, put aluminium foil between the counter top or cutting board and any food you will be serving.

    If cooking both a gluten and gluten-free meal, simply wash your hands with soap after touching the gluten item.

    Regarding seasonings and marinades, please know that salt and pepper and no marinades are safest. Marinades are tricky because many contain soy sauce are aren't gluten-free. Also, soy sauce contains gluten, and luckily there are gluten-free versions available.

    Regarding vegetables or sides, roasting, grilling with aluminum foil, or boiling are all safe cooking methods. Salads dressings with complex ingredient lists are too complicated to go into here, but to start out just stick with a baked potato or rice.

    New condiments, condiments from squeeze bottles, and a new stick of butter is best and safest. If you can see a crumb, then the whole thing is unsafe for someone with celiac disease.

    Finally, the celiac sufferer is not trying to make your life more difficult. They are trying to stay safe while eating. We eat 3-4 meals a day, every day.

    Put yourself in their shoes. Imagine being afraid that every morsel of food put into your mouth could make you sick. Now you have to go to someone's house that doesn't understand or even makes fun of this disease. It is anxiety inducing. Please answer the celiac friend's millionth question because they are just trying to stay healthy!

    I hope this helps!


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    I have celiac and have been gluten free for five years. I don’t understand why you mentioned salt and pepper not being safe. And about the grill. Gluten burns off quickly, all food does. I would say to scrape it just to be sure. But where do you get six months from ? Or to know for sure split your grill in half and keep one area gluten free. I would think foil would catch fire. Then when you started talking about foods it wasn’t clear either. I think this article was confusing. And I know gluten free. 

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    I have a gluten problem as well as dairy problem and and egg problem tummy does not like them been like this for along time in the past year I found out about gluten bring the number on problem but still trying to work out the hard parts of staying away from gluten,dairy and eggs. But I go day by day and still train to add protein in diet but to much and lots of bathroom time. But still a work in progress.?

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  • About Me

    Kelly Carter

    I was diagnosed with Celiac in 2012 and have been gluten free ever since.  I live in Atlanta with my husband and two medium sized children.  I run a blog at FatCeliac.net that covers real life issues with celiac disease, upcoming drug trials, and try to be a reliable source of information for the celiac community.


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  • Related Articles

    Danna Korn
    This article originally appeared in the Spring 2004 edition of Celiac.com's Journal of Gluten-Sensitivity.
    Celiac.com 04/05/2010 - In the 13 years I’ve been involved in the wonderful world of “gluten freedom,” one of the questions I’ve been asked most frequently is whether or not the entire family should be gluten-free.  For parents who have kids on the gluten-free diet, this seems to be a natural instinct––if Johnny can’t eat gluten, none of us will.  But I’m not sure that having the entire family go gluten-free is the best thing––unless, of course, it’s for health reasons (I, for example, choose a gluten-free diet because I believe it’s healthier).  This is one of those questions that has no correct or incorrect answer, so I’ll share with you, for what it’s worth, my personal perspective on the issue.
    Pros: It’s easier when the whole family is gluten-free, because you’re making only one version of every meal, as opposed to two or three.  There is less risk of contaminating safe foods because there aren’t any “unsafe” foods in the house.  Preparation is easier, and there’s no need for the gob drop or any other tricky food-preparation maneuvers.  Finally, from a psychological standpoint, you avoid having some people feel ostracized when their food is made separately and they’re eating different foods from the rest of the family.
    Cons: It’s more expensive and sometimes more labor-intensive for everyone to eat specialty foods (Try not to be a “saver.”  Sometimes, after spending $3 each for sugar ice cream cones, I’ll find myself guarding them like a hawk.  I’ve accumulated several boxes of untouched stale cones now).  Feeding the whole family home-made gluten-free bread at nearly five dollars per loaf, when three out of four family members could be eating a commercial brand, has an impact on the family’s time and finances.
    More important, especially if children are involved, forcing the entire family to be gluten-free because of one person’s dietary restrictions can put a strain on relationships.  Sometimes this works in both directions.  In my family, for instance, my daughter would resent being forced to be on a 100 percent gluten-free diet (we’re pretty close to that anyway) just because that’s how her brother Tyler eats.  Interestingly, though, it works the other way too.  Tyler doesn’t want his sister to be deprived of a bagel, nor does he resent her for being able to eat one (especially because the gluten-free bagels we buy over the Internet are so good these days!).  Resentment is almost inevitable at some level if family members are forced to give up their favorite foods for one member of the family––at least when kids are involved.
    The last reason against a gluten-free family is probably the most compelling one, and is the primary reason I haven’t forced my whole family to be gluten-free: it’s not reality.  Again, this is more important when a child in the family has the restricted diet, because the reality is that this world is filled with gluten, and most people on this planet eat it––lots of it.  These children need to learn how to handle the fact that for the rest of their lives, they’ll be surrounded by people eating gluten.  If that makes them feel bad, sad, or mad, that’s okay.  What better place to learn to deal with those unpleasant emotions than in the loving environment of their own home?  They may be more tempted to cheat because the food is in their home and others are eating it; again, there may be no better place to deal with temptation and learn to resist it than in the loving environment of their own home.
    The compromise: In no way am I advocating someone waving a Krispy Kreme donut in your face singing, “Nah-nee-nah-nee-nah-nee…you can’t eat this” in an effort to build character.  With the excellent gluten-free products available today, it’s easier than ever to compromise by eating relatively gluten-free.  Try to buy salad dressings, condiments, spices, and other foods and ingredients that are gluten-free when you can.  For foods like pasta, bread, and pizza, you can make two varieties, one of which of course is gluten-free and prepared carefully to avoid contamination.
    Cost aside, I don’t see any reason to bake “regular” cookies and baked goods anymore.  The gluten-free mixes are so incredible that my kids and their friends prefer them to “the real deal.”  They’re easy enough that the kids can make them themselves, and it’s a psychological upper for my gluten-free son when his sister and friends can’t get enough of “his kind” of cookies.
    You’ll probably find that because it’s easier to make one meal than two, you’ll gravitate toward gluten-free menus.  With good menu planning, and a kitchen well-stocked with gluten-free condiments and ingredients, it’s likely that your entire family will inadvertently become mostly gluten-free without realizing it, and without the resentment that might have developed if the issue had been forced.
    If your family does end up mostly gluten-free, or if you eliminate gluten completely, remember that anyone who is going to be tested for celiac disease (and all family members should be) must be eating gluten for at least several weeks prior to doing any tests for celiac disease.



    Danna Korn
    This article originally appeared in the Winter 2006 edition of Celiac.com's Journal of Gluten-Sensitivity.
    Celiac.com 04/30/2010 - The gluten-free lifestyle is a big part of who we are.  So when friends, relatives, and loved ones don’t get it—I should clarify—when they seem to choose not to get it—we sometimes get a little cranky.
    I know—I was reminded of how it feels when loved ones don’t choose to get it this past Thanksgiving when one of my relatives who shall remain nameless glutenized the mayo jar.  Now I realize it may seem petty to get tweaked about someone dipping a knife in a mayo jar—but it had gluten all over it, and worse yet, she did the same thing last Thanksgiving, and I threw a tizzy about it then.
    Realizing the first dip alone contaminated the entire jar (of course it was the club-sized jar that is the size of a small Volkswagen), there was no point in stopping her from doing it again.  But I watched incredulously as she taunted me, dipping the knife into the jar—then onto the (gluten) bread—over, and over, and over again.  How many gobs of mayo does one need on a piece of bread?!?  I found myself seething, and my blood boiled with every dip-and-spread motion; I swear she was doing it intentionally.
    Yes, I know I should have had a squeeze bottle handy, and I even write about that in my books. My mistake, but I also write about doing the “gob drop,” which is—as the name implies—the process of taking a gob of (insert condiment here) and dropping it onto said piece of gluten.  Using a separate knife, you spread.  It’s really not that tough.
    The bigger point here is that it made me wonder why, after fourteen years of going through this, she didn’t care more about our gluten-free lifestyle.  I spent about six minutes pondering this when I remembered that it’s not that she doesn’t care—maybe she does, and maybe she doesn’t.   The bigger point is that she wasn’t thinking about it at that moment—and that’s okay. 
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    I write about this stuff in my books, and it surprised me a little to find myself getting miffed about such a petty thing.  I thought I had outgrown those feelings 14 years ago.  I guess my point is that we all face certain challenges from time to time, and we need to put our brightest face forward and meet those challenges with a good attitude, lest they get the best of us.
    The most important thing that helps keep me on track, for what it’s worth, is to remember that the gluten-free lifestyle is the key to our health and ultimate happiness.  We’re blessed to know that a simple change in lifestyle is all it takes to be perfectly healthy—and that’s worth a lotta mayo.



    Jefferson Adams
    Celiac.com 11/25/2011 - In solidarity with family members who have food allergies, many families enforce a voluntary ban on the food or foods in question. But is that an that a safe and advisable practice?
    A leading dietitian claims that people who avoid foods to which they are not allergic may have problems if they attempt to reintroduce those foods later on in life. Dietitian Arlene Normand says that banning food for those without allergies is not healthy, and could lead to later health complications. Normand specifically claims that that banning foods for the whole family, just because a family member has allergies to those foods, may leave one at risk for developing sensitivities when those foods are reintroduced later.
    "You should not avoid any food because you can sensitize the body to that food," she said. "This could lead to an intolerance when you reintroduce the food. She cites wheat as another example, saying that people who "take wheat and gluten out of their diet suffer from bloating when they reintroduce bread." However, a number of prominent voice in the medical community strongly disagree with Normand.
    Many allergy specialists say there is no evidence to support that claim. Royal Prince Alfred Hospital allergy specialist Dr Robert Loblay flatly disputed Normand's claim. "There is no evidence to suggest that avoiding a food can predispose an individual to an intolerance," he Loblay. While he supported high risk allergy families eliminating foods such as gluten, milk or nuts, he said it can be difficult to enforce a total ban.
    For example, Dr Loblay says that it's fine to ban gluten for convenience when someone in the family has celiac disease. However, he says, there's no sound evidence that other people in the family should avoid eating foods containing gluten, or that they will suffer once they reintroduce it into their own diets. Alyson Kakakios of The Children's Hospital Westmead agrees that it's fine for families to place blanket bans on foods for the sake of one family member.
    "If one child has a cow's milk allergy, parents are in a bit of a dilemma about whether they should have cheese, yoghurt and cow's milk in the house because the risk is that the child will mistakenly drink or eat some," she said. "But that risk has to be counterbalanced against removing or excluding whole food groups from the other children and family members who are not allergic." So, what's the verdict on blanket bans of allergens for the whole family?
    Of course, everyone should weigh their own personal factors into the mix, but the current scientific thinking says that such bans are optional, and that there will likely be no increased risk of allergy if or when a banned food is reintroduced to someone who is merely avoiding the food, but not allergic to it to begin with.
    One exception on overall bans might be in those cases where allergies can be life-threatening. Exposure to certain allergens, such as nuts, can have severe consequences for people who are allergic, and an outright family ban might be easy and provide a great amount of relief all around. Anaphylaxis Australia president Maria Said agrees, saying "I would encourage parents to remove the allergen from the house if it is something that can be easily removed. It's much less stressful if you don't have the fear of your child having an anaphylactic fit."
    Otherwise, don't worry. Ban or don't ban depending on your family needs. Just make sure you're replacing any nutrients you might be losing out on by avoiding the banned foods. There is currently no solid scientific evidence to suggest that people who avoid foods would have any problems if they ate those foods many years later.
    Source:

    The Sunday Telegraph October 02, 2011


    Kay A. Chick, Ed.D.
    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


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