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The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know
Kay A. Chick, Ed.D.
Kay A. Chick, Ed.D. Is Professor of Curriculum and Instruction at Penn State Altoona in Altoona, PA.View all articles by Kay A. Chick, Ed.D.
This article originally appeared in the Summer 2013 issue of Journal of Gluten Sensitivity.
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.
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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