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The Physical, Educational, Emotional, and Family Life Challenges of a Lifetime with Celiac Disease: A Case Study
Kay A. Chick, Ed.D. posted an article in Spring 2014 IssueCeliac.com 11/15/2016 - Do you know someone who has lived with celiac disease for over eighty years? Someone who lived on nothing but mashed bananas for a year? Someone who continued to eat gluten for over 30 years because doctors didn't know how to treat a celiac diagnosis? Someone who experienced serious physical, emotional, and family challenges as a result? Well, I met such an individual at the International Celiac Symposium in Chicago in the fall of 2013. Clara (a pseudonym) attended my poster session, The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know. As she stood before my poster with tears in her eyes she began to say, "This is me. This is me." Through a brief conversation then, and several lengthy telephone interviews that followed, she shared her incredible story with me and gave me permission to share it with you. Clara was born in 1933 on a citrus ranch in California and was the youngest of five children. She was very sick as a baby with what her family thought was a "terrible case of the flu." She lost muscle tone, had wrinkly skin, and some mornings she didn't move or even open her eyelids without the help of her mother. She looked malnourished and had a distended stomach. When she was two, her parents took her to Dr. Victor E. Stork, but he was not sure what the problem might be. A few weeks later, the doctor attended a conference where he described Clara's symptoms. He learned of another child with similar symptoms who had been diagnosed with celiac disease and fed nothing but mashed bananas. After Dr. Stork informed Clara's parents, Clara's father purchased a big hook and drove to the Long Beach docks to buy bananas. He hung bunches of bananas on their back porch to ripen and she was fed nothing but mashed bananas for over a year. What started as half a teaspoon at a time quickly grew until she was eating many bananas each day. This part of Clara's story greatly intrigued me, as I had just read the research of Sidney Haas. In the 1920s Hass successfully treated eight children who were "anorexic" from celiac disease with the banana diet while untreated children did not survive (Guandalini, 2007). Growing up, Clara was a happy child but had no appetite and didn't enjoy food. She was very small for her age and, at times, was made to stay at the dinner table until she ate everything on her plate. Clara's mother, a practical nurse, thought she might be allergic to fat. The family kept a quarter of a beef in a freezer locker 25 miles away and her mother scraped the fat off the beef before giving it to Clara. She was also made to finish her breakfast, typically oatmeal, toast, and orange juice, before going to school in the morning. Clara routinely had vomiting and diarrhea each morning, and didn't understand why this didn't happen to other children. She missed school often because she had abdominal discomfort and was weak. Clara hid in the girls' restroom during recess and physical education so she wouldn't have to participate. Since she was unsuccessful at athletics she found it easier to sit on a toilet with her feet pulled up so no one would see her. Clara continued to miss a great deal of school but was required to do her school work at home. During second grade she worked ahead, completing both second and third grade work. Consequently, she was allowed to skip third grade, which only accentuated her small size. When she entered high school people thought she was in third or fourth grade. After entering puberty at age 14 she finally acquired an appetite and began to grow much taller. At this point in her life, Clara decided that she would never be sick again. She graduated from high school in 1950, after acting in dramatic productions, serving as president of the Girls' League, and planning the ten year class reunion. Clara married at age twenty, between her junior and senior years in college. She had few symptoms during this time and was hired as a kindergarten teacher. Her husband was drafted and she taught in several different places on the west coast while he was in the service. During this time, Clara had a baby girl followed by two miscarriages. Three weeks after the birth of their second child Clara became very ill and lost her hair. They had no insurance and she lost a dramatic amount of weight. She weighed only 80 pounds and her husband had to carry her from the bed to the couch. The vomiting and diarrhea got worse and her mother had to take care of her babies. She was on heavy doses of medication and her doctors thought her gastrointestinal problems "were all in her head." Clara's speech became "jumbled" and she was not making sense. Her doctor sent her to a psychiatrist who placed her in a "sanitarium." She was hospitalized for several months where she felt very isolated and alone. Her relatives weren't told where she was and her father would not allow her mother to visit her. At the sanitarium Clara received shock treatments every three days, ten in all. Her sister offered her son's college fund to pay the sanitarium bill so that Clara would be allowed to leave. When Clara returned home she found she had lost much of her memory. She didn't remember how to hold a knife and her daughter, who was three, taught her how to tie her shoes. She was on sedatives and slept much of the time. She does not know how she took care of her children during this time. Clara and her husband had little money, so she took in ironing and taught preschool. It took them twelve years to pay off the hospital bills. It was fifteen years after this experience, and two babies later, that Clara finally got treatment for her celiac disease. She was hospitalized at UCLA Medical Center for a month while more tests and an intestinal biopsy were completed. It was 1972, and she was now 39 years old. The gastroenterologist finally confirmed the diagnosis of celiac disease and told her that she would never be able to eat pie, bread, or cake ever again. Clara was so thrilled that it was "just food" that would make a difference and not cancer. The doctor told her that there was no reason why she was still alive. Within two months she was noticing a difference and had gained weight. Clara was able to go back to teaching part-time and started teaching full-time in 1981. After her celiac diagnosis Clara did her best to avoid grains completely. One doctor told her to eat wheat germ, a product she clearly was correct in avoiding. In the 1970s she tried to make bread with rice, but her attempts were very unsuccessful. Clara started a support group in 1984 which was part of the Celiac Sprue Association. Little by little the group started receiving information on eating gluten-free, as many of these foods were readily available in Europe. By 1988 there were some gluten-free foods available in California. Clara experimented with cooking and breads and tested recipes for Carol Fenster's cookbooks. Her household today is totally gluten-free, with the exception of a loaf of bread for her husband. She and her husband traveled extensively after their retirement, visiting every state except Hawaii, along with the Caribbean and Australia. As far as lessons learned, Clara believes that people should listen to each other. She says, "If a person says, I feel horrible, someone should listen. The medical profession didn't listen to me. They said it was all in my head. If they had listened I could have been helped." It is unfortunate that her doctors didn't listen, as Clara could have been diagnosed much sooner. Willem-Karel Dicke first published an article on the importance of a gluten-free diet for the treatment of celiac disease in 1941 (Berge-Henegouwen & Mulder, 1993). Since my own celiac diagnosis came within two months of the onset of symptoms, I marvel at how someone could live for 39 years while still eating gluten. I think about the lessons to be learned from Clara's story. I consider the advancements that have been made in the diagnosis and treatment of celiac disease and the ease with which I'm able to eat gluten-free. And I send a reminder of the importance of early detection and the physical and emotional consequences that individuals like Clara face when a celiac diagnosis is delayed. References: Guandalini, S. (2007). A brief history of celiac disease. Impact, 7, (3), 1-2. Van Berge-Henegouwen, G. P., & Mulder, C.J. (1993). Pioneer in the gluten-free diet: Willem-Karel Dicke 1905-1962, over 50 year of gluten-free diet. Gut, 34, 1473-1475.
Celiac.com 07/12/2016 - Late in 1998 after discussions with a colleague, who later became my mentor in this field, some loud bells started to ring inside my head as we talked about this little-known (to me at least) condition called celiac disease, an autoimmune disease, as well as non celiac gluten sensitivity. Both of these ailments are triggered by a family of dietary proteins called gluten. Of course, I had been following eating practices based on commonly held beliefs about wheat as the "staff of life" and doing things that were taught to me as 'scientifically accurate'. Yet talking with my colleague, I kept getting answers that implicated this nutritional food group for a myriad of problems that I'd had for as long as I could remember. Hearing about these ailments caused by gluten, I started connecting some of my own experiences with the signs and symptoms he was talking about, especially in relation to my journey through the education system. Physical and behavioral problems had plagued my educational life, making it a disaster. I worked with various educational specialists, from the very beginning, yet they did not seem to be able to help me much. I couldn't maintain a pace of learning that was even remotely close to that of my peers, in most of my scholastic endeavors. As my self-esteem dropped, my behavior worsened. I found myself increasingly being removed from classes and from schools. I sometimes thought that if I heard the words "he just does not apply himself" one more time, I would spontaneously explode. That being said, I am still very thankful for some compassionate, caring teachers and coaches who saw through all my issues and stayed committed trying to help me muddle through and keep moving along in my educational journey. As a high school athletics coach and teacher of Health and Physical Education, now, I often find myself offering dietary concepts and information to students and colleagues that is at odds with what I learned at university just over 20 years ago. And the misinformation I learned is still commonly being touted, even today. Admittedly, research in the field of Nutrition has undergone some dramatic changes over the last two decades, but what I'm talking about is a more fundamental shift in thinking about what we eat and whether it will promote optimum athletic performance, protection from disease, longevity, and a healthy body composition that is more in line with wellness. For instance, I was taught that carbohydrates are the preferred fuel for our muscles, and that carbing-up prior to an athletic event is an effective and desirable strategy. I was also taught that weight loss could be achieved through increased physical activity. I now view these issues very differently. Athletic performance is often enhanced by avoiding many of the foods, such as gluten and sugar, that I was taught to value. Today, I am constantly seeing articles or interviews about high performance athletes who have left the old nutrition paradigm behind and are having great success and increased career longevity in their chosen field. Novak Djokovic is one prominent example where the underlying problem was celiac disease. Vande Velde and Tom Danielson are two professional cyclists who also report performance increases from a gluten-free diet (1). Such a shift in eating can also, especially among young people, remove or reduce learning disabilities as reported by one school that works only with children who struggle with dyslexia (2). Conventional thinkers seem to believe that these benefits have something to do with improved nutrient absorption. However, they may come from enhanced nerve conduction or function. After all, Marios Hadjivassiliou and his colleagues at the Royal Hallamshire Hospital at the University of Sheffield have long been reporting that gluten, even in the absence of celiac disease, is responsible for a large portion of neurological ailments of unknown origin (3). Or the improvements may come from something entirely different. But wherever the improved performance and health are coming from, the gluten-free diet seems to be a great starting place. For instance, a former student, C.W., who has given his permission for me to talk about his case, experienced dramatic changes on a gluten-free and dairy free diet. Already an accomplished athlete, C.W. had also struggled for years with serious academic problems. He struggled with his reading and his writing and was still functioning at the level of an elementary student. A colleague and I recommended that C.W. try this diet to hone his fitness. Not only did he enhance his athletic performance, his reading skills improved abruptly and dramatically. Both his comprehension and his reading speed increased significantly over just a few months. Before he had been on the diet a full year, he was reading novels for pleasure. This was a far cry from his prior brushes with reading, where he was often unable to remember what was said in a sentence he had just finished reading. Certainly, by the end of a paragraph he was previously unable to say how it had begun. Now, he is reading novels, enjoying the experience, and he remembers them well enough to be able to talk, in detail, about the story. My own experience with the gluten-free diet has not produced such rapid results, at least regarding my reading and writing. I certainly felt healthier very quickly, and found it much easier to have a leaner body composition. Many of my minor physical complaints also disappeared, but it has taken years for my struggles with reading to diminish. Today, I am able to read highly technical reports from the peer reviewed medical and nutritional literature. I also find myself reading large, technical books about nutrition and other health issues. I read them cover-to-cover, and I understand most of what I read. My writing is also improving gradually. There is no question in my mind that the gluten-free diet has helped me enormously in these areas, although much more slowly than they helped C.W. Neither do I know how many other children that a gluten-free diet could help. I can only say that if you or someone close to you experiences a learning disability or unexplained gastro intentional issues or withdrawal symptoms when trying to eliminate wheat for a short time, it would be very worthwhile to follow a strict gluten-free diet for six months. Sources: http://rosecole.com/old/articles/fat-loss/enhance-athletic-performance-go-gluten-wheat-free.html Alexandra Blair. Wheat-free diet gives food for thought. http://www.timesonline.co.uk/tol/news/uk/article444290.ece Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. (1996). Does cryptic gluten sensitivity play a part in neurological illness? Lancet. Feb 10;347(8998):369-71.
The Educational, Social, and Family Challenges of Children with Celiac Disease: What Parents Should Know
Kay A. Chick, Ed.D. posted an article in Summer 2013 IssueCeliac.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
Scott Adams posted an article in Celiac Disease & Gluten Intolerance ResearchThe following is from a talk given at the Gluten Intolerance Group Annual Educational Seminar on April 1, 1995 by Dr. Alessio Fasano, Pediatric Gastroenterologist, University of Maryland School of Medicine which was also reported in the May 1995 issue of the GIG Newsletter. The findings of these experts indicate that the incidence of celiac disease in the general population could be as high as 1 in 300-500 people when one takes into account all forms of the disease. Here is a report of the meeting: The question which was brought up was How prevalent is celiac disease?. Although there is much data on the incidence of celiac disease that has been collected in Europe, there is almost no data from the United States. After compiling data on the incidence of celiac disease in Europe, something very unusual was noticed. Two cities in Europe - Malmo, Sweden and Copenhagen, Denmark, which lie only 20 miles apart, seem to have a large difference in the incidence of celiac disease. In Malmo, the incidence was 1 in 500 people, which is quite high, while in Copenhagen it was 1 out of 11,000, which is much lower. Keep in mind that these figures represent only those patients whose celiac disease had been clinically diagnosed by a small intestinal biopsy. There are three major ways in which celiac disease presents itself in patients. The first are the asymptomatic patients who have no symptoms whatsoever, but exhibit damage to their small intestines upon examination. The second are patients with the latent form which means they have blood-tested positive for celiac disease, nut no tissue damage has occurred yet. This form will later develop into the typical or atypical forms. The third is the typical presentation, which shows up when the patient is between 6 and 18 months old. These patients develop the classic symptoms: diarrhea, fatty stools, lack of weight gain, irritability and anorexia. Typical presentations of celiac disease are rather rare in comparison to the other forms, which leads to the overall under-diagnosis of celiac disease, and is illustrated by the following statistics: Clinical Presentation Cumulative Prevalence Classical (Typical) Form 1 in 2500 Atypical - Late Onset Form 1 in 1500 Asymptomatic Form 1 in 1000 Latent Form (celiac disease Associated with other Diseases) 1 in 300-500* *Researchers in Italy have reached the conclusion that the incidence of celiac disease would be more like 1 person with celiac sprue for every 300 to 500 in the general population, when looking at all forms of the disease. Serological screening using anti-gliadin and anti-endomysial antibodies allows doctors to obtain a much more accurate picture of the actual number of people affected by celiac disease. In Europe, for example, researchers have found a much higher incidence of celiac disease than expected (1 in 300!), and it is spread uniformly throughout the population. Researchers re-tested the cities of Malmo and Copenhagen and found the incidence in Copenhagen to be 1 in 300. The difference between the two cities is in the clinical presentation of the disease. In Denmark there were more people who exhibited symptoms of osteoporosis, dermatitis herpetiformis, short stature and other atypical presentations. The awareness of physicians that these presentations could be celiac disease was very low. The discussion then turned to the United States: The next question discussed at the meeting was: What is the true incidence of celiac disease in the United States? The researchers believe that the recently discovered antibody markers will help in answering this question. According to them, we should soon be able to tell whether the low estimates for celiac disease in the US are fact, or if atypical presentations of celiac disease have been overlooked, thus resulting in the extraordinary low level of diagnosed celiacs. A study conducted at the University of Maryland looked at 159 children with atypical symptoms (short stature, poor weight gain, chronic diarrhea, abdominal pain, asymptomatic relatives of celiacs). The following chart summarizes the study: Study: 159 Children With Atypical Symptoms* Symptom Group No. Screened Positive Screen Negative Screen Short stature 78 7 71 Poor weight gain 21 6 15 Chronic diarrhea 17 1 16 Abdominal Pain 8 1 7 Asymptomatic 35 2 33 *Please keep in mind that this study was not based on a random cross-section of the population, but, rather on children who already exhibited atypical symptoms. It is crucial to make the correct diagnosis, and to keep even asymptomatic people free of gluten . This is due to the associated morbidity, such as chronic ill health. With regard to the pediatric population, permanent stunted growth may result from a misdiagnosis. If the physicians fail to make a timely diagnosis, there is no time for catch-up growth, and the individual may be short forever. The same is true with skeletal disorders such as osteoporosis. Everyone with celiac sprue who experiences osteoporosis must place a certain amount of blame on the physician for not diagnosing celiac disease in time to prevent such demineralization.
By Kelly Rohlfs Celiac.com 09/29/2004 - The Childrens Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced the launch of a new educational campaign on Celiac Disease, one of the most common genetic digestive conditions possibly affecting as many as three million Americans (up to 1 percent). Since it has been proven that early detection and intervention can prevent long-term consequences, CDHNF and NASPGHAN are focusing on accurate and timely diagnosis and treatment in children. We plan to raise greater awareness about celiac disease and urge physicians to add it to their screening checklist, said Alessio Fasano M.D., chair of the CDHNF Celiac Disease Campaign, NIH Consensus speaker and director of the Mucosal Biology Research Center for the University of Maryland School of Medicine Center for Celiac Research. We now have the information we need on how to diagnose and treat this disease and we need to start applying that knowledge into practice. To help spread the word, the campaign will include physician materials such as a celiac disease physician CME slide set, a nationwide Grand Rounds program, and a soon-to-be released NASPGHAN Clinical Practice Guideline on the Evaluation and Management of Celiac Disease in Children, in the fall of 2004. In addition, a new web site http://www.celiachealth.org will provide resources for the medical professional community and the general public. They have put together a comprehensive slide set (Acrobat and PowerPoint) available on their website http://www.celiacfacts.org. Although somewhat specific for pediatricians and pediatric gastroenterologists, the material is applicable to all stages and ages of celiac disease. Topics include: Definition, Associated Conditions, Clinical Manifestations and Complications, Diagnosis, Epidemiology, Pathogenesis, Prevention, and Treatment.