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Found 16 results

  1. Celiac.com 10/25/2016 - The 504 Plan stems from Section 504 of the Rehabilitation Act of 1973. This section prevents discrimination against public school students in grades kindergarten through 12 because of disabilities. A 504 plan is meant to "remove barriers" to learning by providing a specific outline on how to make accommodations or modifications on a student-by-student basis. The Rehabilitation Act of 1973 applies to all institutions receiving federal financial assistance, such as public schools. Under this law, public schools must provide a free, appropriate public education and not discriminate against disabled students. This law acknowledges that the disability may not require special education services, but a plan is needed to ensure the student receives an appropriate education accommodating the disability within the classroom. This law must accommodate a special diet, including the gluten-free diet for children with celiac disease. The decision to enroll in the 504 plan is entirely up to you as a parent or guardian. Some parents find that informal discussions and accommodations have been sufficient for having the child's needs met at school. However, having a formal 504 plan in place is valuable, especially as teachers and staffing may change. The 504 plan guarantees by law that your child's needs are met throughout their school career and not just in certain classrooms. You can choose to utilize your 504 plan accommodations any time, and having them in place before you need them can save important time and resources. It can be helpful if your child develops symptoms from gluten exposure, or if you are having trouble with consistent accountability. How to Start Your 504 Plan First you need to contact your child's school. The 504 plan team should include: Primary classroom teacher School counselor or psychologist School nurse Director of food services 504 plan coordinator You will also need a doctor's note to show that your child has been formally diagnosed with celiac disease or non-celiac gluten sensitivity (gluten sensitivity). This note should outline the accommodations required to maintain your child's health, enabling him or her to have equal access to public education. Having a 504 plan in place will also make it much easier to apply for disability accommodation in college. What Information is Included in a 504 Plan? Generally you'll need to provide information about your child's diagnosis and needs including: Year of diagnosis Amount of time on a gluten-free diet Details on why a 504 plan is needed (including how a restricted diet affects a major life activity) Child's developmental level and needs (are they self-reliant in managing the diet? do they need strict supervision? Etc.) A 504 PLAN will specifically outline all of the details of how our child's celiac disease needs to be managed in the classroom. For example you and the 503 plan team can develop an action plan for: Navigating school lunches Snacks Birthday Parties Art Classes Field Trips Holiday Parties I wish that this 504 Plan was available when my son attended school! Do not forget to check your school's ruling on peanut butter. A lot of schools will not allow lunches to contain peanut butter because of severe peanut allergies, and we need to be respectful of other food allergies as we sort through the maze of gluten-free lunch packing. If you have a picky eater or a child who needs to gain weight after their diagnosis, nutritional shakes, power bars and calorie powders can pack a punch. Make sure they are labeled gluten-free. Consult with a registered dietitian to help with your child's meal plan. When you find a winning combo, send enough with your child to share. That will show your child's peers that gluten-free food is not "weird" and your child will have the opportunity to feel part of the group. Recently, the U.S. Department of Agriculture (USDA) mandated that food service workers who manage and handle meals would need to complete education and training requirements in order to maintain their positions. The requirement to maintain professional standards education, which is required by the Healthy, Hunger-Free Kids Act, went into effect on July 1, 2015. Completion of the GREAT Schools program helps school nutrition professionals meet this requirement. You can remind your child's school that completing the GREAT Schools training program does benefit both your child and the cafeteria staff in maintaining the necessary education to work in school food service Additional Resources: BeyondCeliac.org allergicliving.com Understood.org
  2. Celiac.com 07/19/2016 - We know that celiac disease afflicts almost 1% of the general population (1). We also know that about 12% of the general population has non-celiac gluten sensitivity, as indicated by elevated IgG class anti-gliadin antibodies in their blood (2). Although elevated antibodies identified by this test are often dismissed as "non-specific", they are clear evidence that the immune system is mounting a reaction against the most common food in our western diet. It is also true that many people who produce these antibodies and have then excluded gluten from their diets have also experienced improved health. Unfortunately, most of the individuals who have elevated IgG anti-gliadin antibodies and might benefit from avoiding gluten do not know that they are gluten sensitive and/or have celiac disease. Thus, we really don't know how many, or which, school children should be avoiding gluten to optimize their academic potential as they work their way through the education system. Approaching this issue from a different angle, we know that between 10% and 15% of the U.S. population has dyslexia (3). About 60% of those with ADHD have dyslexia (3). If we calculate the prevalence of ADHD, at 8.8% of the population (4), then just the ADHD component, it should give us 5.28% of the population with dyslexia. But we can't tell how much overlap there is between this group and the group that constitutes between 10% and 15% of the population that are reported as having dyslexia. These disabilities have been given considerable attention and have been studied for some time, yet we really know little about their causes, except in cases of traumatic brain injury. However, there is a startling study, reported in The Times ten years ago, from the Nunnykirk School in Northumberland, U.K. (5). The astounding results of this study continue to cry out for further research and possible replication. After 6 months on a gluten-free diet, testing showed that 11 of the 12 (92%) live-in students had improved their reading and comprehension at more than twice the rate at which regular students are expected to improve. Among the 22 students living in the community and attending this special school for dyslexic students during the day, 17 of them (77%) showed similar improvements (5). To put these results in perspective, special needs teachers are often very proud when they can help students achieve at rates similar to regular students. Doubling the rates of improvement is an astonishingly positive result! And a few of these students leaped ahead at six times the rate of normal students! The numbers of students involved in this study are too small to allow us to extrapolate to other dyslexic populations. And, given that the research was done in the United Kingdom, where definitions of learning disabilities, and other factors may be dissimilar, and that the work was reported in a newspaper instead of a peer reviewed journal, and the startlingly positive nature of these results, we really need further, carefully designed studies to explore this phenomenon. The Nunnykirk findings are consistent with the extensive brain and neurological research that has been done at the Royal Hallamshire Hospital at the University of Sheffield, over the last two decades, by Marios Hadjivassiliou and his colleagues. They have found that a strict gluten-free diet can often relieve central and peripheral neurological symptoms. Further, many prominent researchers who work with children and adults who have dyslexia characterize it as a neurobiological condition, and can demonstrate, with MRI, altered brain function in dyslexia (8). It is also clear that many cases of dyslexia are at least partly genetically conferred (8, 9). Neither are learning disabilities limited to dyslexia. Although some practitioners lump two or more learning disabilities together, the literature distinguishes between dyslexia, dysgraphia, dyspraxia, dyscalculia, dysphasia/aphasia, auditory processing disorders, visual processing disorders, etc. Some such practitioners not only differentiate between types of learning disabilities, they also differentiate between sub-types of disabilities. For instance, motor dysgraphia (where fine motor speed is impaired), dyslexic dysgraphia (where normal fine motor speed allows them to draw or copy but impairs spontaneous writing) and spatial dysgraphia (where handwriting is illegible due to distortion) can each be identified based on symptoms (10). Similar sub-types are seen in other learning disabilities. But what if the findings at Nunnykirk School are broadly applicable to all of these types of learning problems? Or perhaps further research can tell us which types and sub-types of learning disabilities can often be alleviated by a gluten-free diet. My own professional observations suggest that the number of students helped by a gluten-free diet would be similar to the proportions seen at Nunnykirk School. I have also observed that as the strictness of the diet increases, so does the number of students who improve. However, the diagnosing professionals are becoming reluctant to differentiate, even between general types of learning disabilities such as dyslexia and dysgraphia. As teachers, we were told that a child had learning disabilities and then, if not specified in the documents we were given, we had to figure out exactly what type of disability they had, then devise or research effective ways of teaching these students. I have done a little of both, but my experience is that this choice varies from one teacher to the next, and one situation to the next. Unfortunately, depending on the individual teacher's workload, teaching background, and personal biases, these children can sometimes be neglected or under-served, a choice that is often dictated by excessive workloads and demands on teachers' time to perform other tasks, especially extensive reporting and supervising sports and other extra-curricular activities. Please recall the overlap between dyslexia and ADHD mentioned earlier (3), and consider that there are ten reports of connections between attention deficit disorders and celiac disease published in the peer reviewed medical literature. Now, please recall that about 60% of these ADHD children will have dyslexia (3). Since the current, and past issues, of the Diagnostic and Statistical Manual of Mental Disorders, require that ADHD and learning disorders each be differentiated from any medical condition that might be causing the same symptoms and be alleviated by resolution of the medical condition in question. On that basis alone, almost every child being considered for a diagnosis of learning disorders or ADHD should be thoroughly tested for celiac disease and non-celiac gluten sensitivity. Yet, I would be very surprised to learn that this is commonly being done. Thus, we have a situation in which we are forced to rely upon a study conducted by a group of teachers, in cooperation with parents and students, that was published in The Times (5) and we must take action on our own because, as yet, celiac disease and non-celiac gluten sensitivity are not yet being differentiated from ADHD and/or learning disabilities. The really tragic part of this story is that a gluten-free diet, if started early enough, can reduce or completely eliminate all of these problems with learning disabilities and attention deficits, when gluten is the underlying problem. If you or your spouse are gluten sensitive, or have celiac disease, do you also have children who struggle in school? Based on the data from Nunnykirk School, current blood tests are probably not sufficient to rule out those who would benefit from a gluten-free diet. For the moment, you may need to institute a trial of a gluten-free diet, as mentioned above, while we await further research in this area. But wouldn't it be valuable for succeeding generations to know, or have a pretty clear idea whether the diet could help? And with what types and/or sub-types of learning disorders? That's where more research could really help. We already know that there is an association between gluten sensitivity and seizure disorders, ataxia and cerebellar degeneration, neuropathy (damage to peripheral nervous system), schizophrenia, depression, migraine, anxiety disorders, autism, multiple sclerosis, myasthenia gravis (an autoimmune neuromuscular disease), and white matter lesions in the brain (11). It should not be surprising if gluten underlies many or most cases of learning disorders and attention deficits. And if research can tell us which cases would be most likely to benefit from the diet, that will be a huge step forward for parents, students, teachers, and government agencies that provide funding for the education of those who are afflicted with these ailments. In the meantime, we only have the information that we have. So, despite its many weaknesses, the Nunnykirk investigation of dyslexic children argues for experimental implementation, on a trial basis. I would suggest at least a six-months-long period of strict gluten avoidance to determine whether it will help individuals who suffer from dyslexia and/or other learning disabilities. Sources: 1. Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286-92. 2. Hadjivassiliou M, Grünewald R A, Davies-Jones G A B. Gluten sensitivity as a neurological illness. J Neurol Neurosurg Psychiatry 2002;72:560-563. 3. Dyslexia Research Institute http://www.dyslexia-add.org/ 4. National Resource Center on ADHD http://www.help4adhd.org/about/statistics 5. Blair http://www.thetimes.co.uk/tto/news/uk/article1924736.ece 6. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71. 7. Aziz I, Hadjivassiliou M. Coeliac disease: noncoeliac gluten sensitivity--food for thought. Nat Rev Gastroenterol Hepatol. 2014 Jul;11(7):398-9. 8. Shaywitz SE, Shaywitz BA. The Neurobiology of Reading and Dyslexia. Focus on Basics - Connecting Research & Practice, Volume 5,A: Aug. 2001. http://www.ncsall.net/index.html@id=278.html 9. Eicher JD, Powers NR, Miller LL, Mueller KL, Mascheretti S, Marino C, Willcutt EG, DeFries JC, Olson RK, Smith SD, Pennington BF, Tomblin JB, Ring SM, Gruen JR. Characterization of the DYX2 locus on chromosome 6p22 with reading disability, language impairment, and IQ. Hum Genet. 2014 Jul;133(7):869-81. 10. About Education http://specialed.about.com/od/readingliteracy/a/Dyslexia-And-Dysgraphia.htm 11. Jackson JR, Eaton WW, Cascella NG, Fasano A, Kelly DL.Neurologic and psychiatric manifestations of celiac disease and gluten sensitivity. Psychiatr Q. 2012 Mar;83(1):91-102. 12. Diaconu G, Burlea M, Grigore I, Anton DT, Trandafir LM. Celiac disease with neurologic manifestations in children. Rev Med Chir Soc Med Nat Iasi. 2013 Jan-Mar;117(1):88-94. PubMed PMID: 24505898. 13. Niederhofer H. Association of attention-deficit/hyperactivity disorder and celiac disease: a brief report. Prim Care Companion CNS Disord. 2011;13(3). pii: PCC.10br01104PMCID: PMC3184556. 14. Niederhofer H, Pittschieler K. A preliminary investigation of ADHD symptoms in persons with celiac disease. J Atten Disord. 2006 Nov;10(2):200-4. 15. Zelnik N, Pacht A, Obeid R, Lerner A. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6. 16. KozÅ‚owska ZE. [Evaluation of mental status of children with malabsorption syndrome after long-term treatment with gluten-free diet (preliminary report)]. Psychiatr Pol. 1991 Mar-Apr;25(2):130-4. Polish. 17. Diaconu G, Burlea M, Grigore I, Anton DT, Trandafir LM. Celiac disease with neurologic manifestations in children. Rev Med Chir Soc Med Nat Iasi. 2013 Jan-Mar;117(1):88-94. PubMed PMID: 24505898. 18. Niederhofer H. Association of attention-deficit/hyperactivity disorder and celiac disease: a brief report. Prim Care Companion CNS Disord. 2011;13(3). pii: PCC.10br01104. PMCID: PMC3184556. 19. Niederhofer H, Pittschieler K. A preliminary investigation of ADHD symptoms in persons with celiac disease. J Atten Disord. 2006 Nov;10(2):200-4. 20. 4: Zelnik N, Pacht A, Obeid R, Lerner A. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6. 21. KozÅ‚owska ZE. [Evaluation of mental status of children with malabsorption syndrome after long-term treatment with gluten-free diet (preliminary report)]. Psychiatr Pol. 1991 Mar-Apr;25(2):130-4. Polish.
  3. I am a nursing student, and my children attend preschool. The preschool uses the college's dining facility to cater all of their meals. I spent time providing a training for the community college's dining facility staff on allergens, cross-contamination, and understanding the importance of strict avoidance for allergic individuals or in celiac disease. There are a number of small children with celiac disease, allergies, and intolerances, whose parents are required to pay the same amount, but do not receive meals, and must send food to school with their children, because the dining facility cannot accommodate. Of course, our family is one of them. My daughter must be gluten and dairy free, while my son is only gluten free. I know that this is somehow illegal, wrong, or unethical, but don't know what steps should be taken. The school claims no responsibility, and will not budge on the payment system to adjust the price for children unable to participate in the meals. The dining facility has claimed for many months that they are working on being able to accommodate, but it was recently revealed that they are actually working on a letter from their attorney to force parents to sign a "release of liability waiver" before serving the allergic children. When I provided the training 4 months ago, all of the staff displayed decent levels of understanding and interest. What can I do to rectify this situation? Who needs to be informed, or who can help "encourage" (force is okay as well, as long as my family doesn't have to get involved in a lawsuit) the preschool to provide an adjusted cost to these families? If the dining facility is requiring a waiver, I am not confident in their ability to prepare, nor determination/dedication to provide "safe" food. (albeit, I understand why) I am the person who initiated the chain of events, and have been pushing everyone along the way to be able to provide "safe" meals for the children, but at this point, I am fed up with everyone involved, particularly the preschool, because they seem to want nothing to do with the situation, and are making me deal directly with their vendor. Advice please?!?! I don't want to ruin our relationship with the preschool, because the teachers are wonderful and my kids really enjoy it there... but for the sake of my family and many other current and future families... I don't want to just look the other way!
  4. I'm living in Singapore and currently a College Student. Not an officially diagnosed Celiac but food intolerance tests shows that I'm intolerant to gluten, dairy and many more. Being gluten free in Singapore have not been easy as it's something fairly uncommon in Asia, but some limited choices are still available. However, I've been contemplating for awhile now whether to participate in a 6-month Exchange program at a University in Kaohsiung, Taiwan. The lack of awareness of multiple food intolerance in Taiwan have been something that I've been worrying about. My friends are going, but food becomes my major concern as I've heard that eating out is cheaper. Does anyone have any experiences being gluten free in Taiwan? Appreciate a reply, thanks:)
  5. DS was diagnosed with celiac disease at age 12 months and is now a healthy, gluten-free 5-year-old in kindergarten at our local public school. We do not have a formal 504 in place, just verbal understandings with his teachers, the school nurse, and the district's head dietitian. He brown-bags it every day for lunch, but is allowed to get gluten-free items like milk and fresh fruit from the cafeteria. I specifically addressed the issues of Play-Doh (I prefer he never use it because I am worried it will get under his nails and find its way to his mouth) and papier-mâché (which they say they never use). I did not, however, think to address the issue of ice cream cone crafts. Apparently this week the kindergarten class made a Christmas craft by covering a sugar cone with green icing and sticking little candies all over it. On Friday they brought home their creations. I am hopping mad that (without DH and I being consulted or notified) they had DS make a delicious treat that every OTHER kid can eat, but he can't. DS says he did wash his hands afterward (apparently all the kids did, as you can imagine how messy this project was), so he wasn't put particularly at risk. (This is a kid who would NEVER risk eating wheat in a million years... one of the advantages of being diagnosed so young. So there was no real risk of him sneaking a taste.) I am mad because to me it just seems insensitive, even cruel. Especially when they make gluten-free sugar cones. On the other hand, DS does not seem bothered at all. He just enjoyed making the craft (he loves all art projects) and he is actually as excited to watch his (non-celiac) big brother eat the treat as any other kid would be to eat it themself! Am I overreacting here? I feel like this is a sign that this informal verbal understanding is not enough and we need a formal, written 504. But is it really as big a deal as I think it is? What do you all think?
  6. New to the forum, new to celiac momdom. Anyone out there have advice on sticking your celiac teen on a bus for a sixteen hour drive to Universal Studios for a chorus adjudication trip? I just don't see how this is going to be possible. They will stay four days then return home via another sixteen hour bus trip. Universal does not guarantee gluten-free meals and I can't exactly pack a week of food. And she can't exactly drive to a store while she is there. I'd hate to have her miss out on the experience. And I can't have her eat nothing but baked potatoes and grilled chicken salads all week. What is with that and restaurants offering only those items gluten-free btw?
  7. Hello, So based on blood tests and discussing symptoms with a GI, we have both come to the conclusion that I almost certainly have celiac. I am a 17 year old junior in High School. This week and the following are finals weeks. Gluten causes me a great deal of headaches, lack of sleep, lack of focus, as well as irrational depression. ( I do not know if the depression is a separate factor but it sure doesn't help.) But I have a Biopsy scheduled a few days from now. (right before the end of finals week.) And I am having a miserable time trying to study and get homework done now. I have a presentation to make for my english class, and it is way harder than it should be. I normally have an outstanding work ethic in school, but i just simply can't focus on anything. I have terrible short term memory loss as well. I am a very good student and can't afford to fail these finals. I am so damn depressed about all of this. I don't know what to do, I have been trying to tough out the symptoms I'm feeling until the biopsy, but it occurs and an unfavorable time. And I am receiving no support from my parents, just insults like "oh you're glutens making you act all illogical again huh? Deal with it, get your finals done." I have never worked so hard in my life before. I just would like to ask, what do i do? I have absolutely no idea how to cope with this, my most important year in High School is going down the drain because of this unforgiving disease. I almost just want to give up.
  8. I have 2 children about to be tested for celiac disease. My dx was in 1983. Winter weather is delaying the testing, but dr gave ok to start gluten-free diet as one is showing typical symptoms & one of my other children was diagnosed at age 21 (3 other adult children, never tested). As long as tests are run soon (next week) he says this won't affect results/conclusions of upcoming labs and tests. The testing for celiac disease has changed dramatically since 1983. But managing it is still the same. But managing CHILDREN with celiac disease is new to me. They are only 6 and 8 yrs old. I'm prepared and knowledgeable of gluten-free homes/kitchens. The kitchen is gluten free and we're implementing rules for those (husband & daughter) who still consume gluten. I'm not sure how to manage this when they are away from home, though. My biggest concern is at school. How can cc be managed in a school lunchroom (crumbs on tables, little kids eating habits)?? Kids with peanut allergies are seated at their own table. Is this plausible for celiac disease? What if there are no other kids at his school? Similarly, when parties are held in classrooms and desks are arranged touching each other (groups on 4)... do I ask the teacher to rearrange her classroom?? Will I have to make waves to get the help my kids will need? (I'm uncomfortable making waves :s) Will they understand the how important 100% gluten-free is, since symptoms are not like an outward allergic reaction?? ANY advice would be appreciated!! (I will begin by pulling myself together and giving a listen to you all!!)
  9. My son has been diagnosed with Celiac and he is getting glutened. Best I can tell, it is coming from his 1st grade classroom at school. Everyone is aware of his Celiac, there are doctors notes/diagnosis on file, we have met with the teachers, nurse and principal but there no 504 in place. Here is the problem, I believe. The students eat snacks everyday in class. They do this while sitting in the front of the class on the floor, they are allowed to walk around eating, and to snack through out the day whenever they need. According to the teacher about 90% of the students have gluten snacks. There is one student who carries crackers with her most of the day setting them down on shared tables and leaving crumbs behind. The students rotate through out the day to different tables, all of which have had someone eating gluten at them at some point during the day, without being cleaned. We take every precaution with my son's snack and hygiene in the classroom. He brings his own food, he eats at his desk, he lays a paper towel down to place his snack on, he washes his hands before he touches his food, he always brings his lunch and his lunchroom hygiene is very good as well. I think he is getting glutened from all of the crumbs and snacks laying around the classroom. Have any of you had any issues with this or dealt with the teachers/administration regarding classroom snacking problems? Thanks for any advice you have.
  10. Celiac.com 10/29/2008 - Equality. That’s all any parent wants for his or her child. In this case I’m talking about food at school. Are you completely frustrated that you can’t get a gluten-free lunch for your child at school? According to a recent survey by the American Celiac Disease Alliance, many parents of celiac children may feel the same way. The survey conducted during the summer of 2008, found of 2,200 respondents, 90% had to regularly pack gluten-free lunches for their celiac child. I used to be one of them and was stuck feeling like I was banging my head against a wall trying to get a few hot lunches for my child. That goal of equality saw me through a journey — years in the making — that would eventually pay off. Just before my celiac daughter’s kindergarten year began, I thought I covered all my bases. I talked to the school nurse, Emma’s teacher, and the head of the cafeteria about her condition and her diet. I found there was very little she could have at school except beef tacos, which she loved. Eventually that one menu item, which made my daughter feel just like the rest of the kids, vanished; a near tragedy for her, sheer frustration for me. I would ask myself “Why do the schools have to serve up so much food with gluten?” I also didn’t feel like I was taken seriously by the cafeteria employees. I housed some small gluten-free food items in the freezer at school in case of emergency. That expensive food was thrown away, with no one even realizing they did it. That told me, they weren’t paying attention. And I was done. It seemed as though Emma was destined for cold lunches until she graduated from high school. Honestly, school lunches may not be the perfect meals for our children, but suddenly many parents feel an urgency to feed them school food when their celiac child starts to feel left out. The good news is: times may be changing. Sherri Knutson, Student Nutrition Services Coordinator for the Rochester, Minnesota School District, and her staff have developed a monthly gluten-free, menu for students. “We’re making it come together…to meet the needs of the student,” Knutson said. It is more like students! As many as 20 children every day order from this menu which actually mirrors the “regular” monthly menu, including gluten-free chicken nuggets, spaghetti and hamburgers WITH a bun. Knutson says they started slow in 2004, offering only a few gluten-free options each week and then expanded from there. Offering the menu comes at a cost – to the district. Officials with the US Department of Agriculture (USDA), which oversees the school lunch program, say schools cannot charge parents more for specialized, expensive diets. A regular school lunch in that district costs $2.05, but the gluten-free lunch costs about double. Knutson’s district essentially “eats” the cost. “Cost is not one of the factors that should impact [implementing this diet in schools].” But she admits they look into finding ways to cut costs, like baking their own gluten-free goodies. Now word is spreading about this groundbreaking menu. Knutson says she is getting calls from school districts across the country asking her how she does it. Her answer is simple, start small and do what you can. She also asks parents to be understanding and patient; accommodating the gluten-free diet is very new for most school districts. My conversation with Knutson was enlightening and empowering, but back at home I was struggling with my own district. There were times in the last four years, where I wondered if the district even cared about my daughter’s health and nutrition needs. After months of many unanswered emails and phone calls with my district nutrition department in late 2007 and early 2008, I finally called my school board member to get some attention. That one phone call got the ball rolling. In the six months since, I have had several meetings with key employees in the district and school. My district also appointed a coordinator for specialized diets who works directly with schools that have special food requirements for certain students. In October of 2008, I saw a first draft if it’s two-week, gluten-free menu. The nutritionist I work with tells me it is just the beginning. I am so pleased and proud of them for finally taking some much-needed action. It is amazing how far you can come with a lot of work, tenacity and passion for equality. If you are in the same situation that I was, I urge you to take action. If your school cook won’t help you, go to the district nutrition director, if they won’t help you go to the superintendent, if they won’t help you go to the school board, and if they won’t help you, contact the education department in your state. That group may oversee statewide compliance of USDA rules. I was able to get this done without a 504 plan for my child. Simply put, a 504 plan is detailed paperwork which gets you the needed accommodations for your child and their diet. You may need to create a 504 plan to push along the lunch changes for your child. Watch for much more on this important issue in upcoming posts. I cannot guarantee you will get drastic changes in lunch offerings from your district, so if you are still in a slump, check out the American Celiac Disease Alliance. Serving specialized diets in school is a hot topic right now and the ACDA is trying to advocate for all of us. Your child has a right to eat school food. And this is one food fight – worth getting in on! *For much more information on the Rochester, MN School District’s Gluten Free menu, see this article I wrote for FoodService Director Magazine in September 2008.
  11. The key to gluten-free cooking is simple: take a little bit of homework on your part, a dash of extra effort, and dump in a whole lot of creativity - voila! You're a gluten-free gourmet! But some of the greatest culinary challenges are for those meals-on-the-run, which seem to be the most common kind sometimes. Kids with Celiac Disease has extensive menu suggestions for all meals and snacks, but the following is a short excerpt of on-the-go snack ideas: Chips There are many flavors of gluten-free chips available at grocery stores! string cheese Taquitos, quesadillas, tacos, tamales (made with corn tortillas - they travel well) Nachos Corn Nuts Raisins and other dried fruit Chex mix There is a gluten-free cereal available at many grocery stores or health food markets thats just like Chex--make the mix as you would Chex mix. Popcorn Cheese cubes with toothpicks in them and rice crackers Fruit rolls Lettuce wrapped around ham, cheese, turkey, or roast beef Rice cakes (check with the manufacturer; not all are gluten-free) Hard-boiled eggs or deviled eggs Applesauce Apples dipped in caramel or peanut butter (if youre sending apples in a lunchbox, remember to pour lemon juice over the slices; that will keep them from turning brown) Individually packaged pudding Jello Yogurt Fruit cups (individually packaged cups are great for lunchboxes) Fruit snacks (like Farleys brand) High-protein bars (e.g., Tigers Milk, GeniSoy) Nuts Marshmallows Trail mix Combine peanuts, M&Ms, dried fruit, chocolate chips, and other trail mix items for a great on-the-go snack. - Beware of commercial trail mixes--they often roll their date pieces in oat flour. The occasional candy bar or other junk food treat (see the next chapter for information on safe junk food)
  12. My son was just diagnosed with Celiacs Disease this summer. I am a school administrator and a school board trustee in a different district. Did you know you have the option to have the school's cafeteria have gluten-free food options? Let me know via posting if this interests anyone or if there are similar posts. Thanks.
  13. Hello! I'm new here I don't have celiac disease (confirmed by biopsy), but I am gluten intolerant and thus have been put on a gluten free diet. Actually, my gastroenterologist told me to go gluten free a couple years ago, but I didn't want to bother because I thought it was too big of a hassle and that I don't really need to do it...then the turning point came last week when my endocrinologist (I have hypothyroidism) increased my medication yet again and I remembered the possible connection between gluten intolerance and other autoimmune diseases/thyroid disease. I am actually a professionall trained ballerina, I study in Russia, but I became so ill from the hypothyroidism (and maybe the gluten intolerance) that I had to return home on medical leave and I am only cleared to go back to Russia in January! Oy. Anyway, something clicked and I decided to finally take the initiative to do what I was supposed to do two years ago and go gluten free! I have to be healthy to dance So I am new to this - it's been less than a week! But within the first day I noticed an obvious difference - and I must say I am stunned. I am also pleasantly surprised that I am having an incredibly easy time with this! My mom said that the fact that it is so easy for me might suggest that my body really does need to be gluten free. I also think it's because I already don't eat many processed foods to start with, so I guess I didn't have to go through as big of a 'loss' as many others do. Anywho. I have a bit of a dilemma and I would really appreciate your suggestions on this! I currently walk to work but I am now upgrading to RUNNING to work! This is awesome and I am so proud of myself It does bring with it a small issue - lunch - but luckily it can be worked around and remedied! On Monday mornings I will walk instead of run so that I can carry a backpack with lunch food for the week and work clothes for the week, and walk home to bring it back on Friday afternoons. As such, I am trying to make a list of foods I can keep at work to fix myself a lunch. The catch is that the items need to meet the following criteria: Very limited fridge space, but plenty of cupboard space Gluten free obviously Peanut/tree nut free (not allowed at the school) I DO have a microwave. I am in walking distance from a supermarket that I can go to if I must, but I am trying to save money so would rather not make a trip there every day. And I am trying to avoid snack items and focus more on actual real food (I don't like snack products so much). I figured I should invest in a microwave rice cooker and possibly a microwave pasta cooker in light of some of the items I have come up with, listed below. So, anyone care to add to the beginnings of what I hope will be an extensive, creative, and impressive list? 100-cal packs of popcorn Packets of grits Gluten free oatmeal Cream of rice Bob's Red Milk gluten-free Mighty Tasty Hot Cereal Knorr Bouillon Yogurt Beef jerky V8 cans gluten-free cold cereal Milk Almond milk gluten-free Bars (KIND, NuGo, Luna, etc.) Tuna Avocados Baby carrots Fruit Applesauce/Buddy Fruit or other similar Rice, buckwheat (I can invest in a microwave rice cooker) Potatoes, sweet potatoes (I can make those in the microwave, right?) Are there any other self-stable veggies I can cook in the microwave? That's all I have for now! I am so sorry this post was so long, I just wanted to introduce myself properly since it's my first post
  14. If you have a lot of tension and you get a headache, do what it says on the aspirin bottle: Take two aspirin and Keep away from children. The transition from summer to back-to-school is paradoxical. On one hand, summer means sleeping in, adventuresome vacations, evenings free of homework and obligatory assignments, and a chance for parents to take pleasure in their kids carefree, relaxed summer schedule (or lack thereof). On the other hand, mantras like, Im bored, Are we there yet? Theres nothing to do here, and the non-stop sibling bickering that seems to escalate when one child dares to breathe the same air as another has some parents singing, Its the most wonderful time of the year a good four months before Christmas. But its not always the most wonderful time of the year. For parents whose children cant eat gluten, sending kids to school can create an entirely new dimension of anxiety that extend far beyond the typical back-to-school blues: What will he eat for lunch? What if there are birthday parties and my child cant participate? Will kids make fun of him? Will the teacher take time to understand his condition? What if he eats the Play Doh? How can I make this easier for him? This is harder on you than it is on your child If your child is newly diagnosed with celiac disease, or is new to the gluten-free diet, I know youre thinking, Oh, no its not! She just doesnt understand how hard this is. When I speak at conferences and tell parents this is harder on them than it is on their kids, I inevitably have one or two - always the parents of newly diagnosed celiac kids - who respectfully (and usually temperamentally) disagree. They tell me I dont understand. Believe me, I do understand. But also believe me that this is harder on you than it is your child. Its harder, because of the very nature of being a parent. We love our kids so intensely that every pain they experience hurts us ten times more. Nothing breaks our hearts more than to know that our children may experience heartache. But remember, one of our most important jobs as parents is to teach our children how to deal with unpleasant experiences and emotions. As Anne Bronte said, If you would have your son to walk honorably through the world, you must not attempt to clear the stones from his path, but teach him to walk firmly over them. Tips to make it easier Give your child control of his diet. Yep, even if hes just two years old. Anyone who has heard me speak or has read either of my books knows that Im an absolute nag about telling you to give your child control of his diet, because if he doesnt control his diet, his diet will control him. Educate your teachers and principal. Set a meeting with your childs teacher(s) and principal to explain your childs condition and diet. The best time to do this is a day or two before school starts for the year. The teachers are usually at school setting up their classrooms, but theyre not yet distracted with new students, parents, and classroom responsibilities. Provide the teachers, principal, and the school nurse, if you have one, with clear, concise written materials explaining celiac disease and your childs diet. Some people find it helpful to give the book Kids with Celiac Disease to the school, so that the nurse, teachers, and principal can more thoroughly understand the condition and diet. Make sure they understand the severity of accidental gluten ingestion. Remind them that they should contact you if there are any questions, rather than taking a chance. Lunches: use good judgment. Most of the time, the people in charge of preparing food for children in a preschool or school setting are already used to dealing with lactose intolerance, peanut allergies, and other dietary restrictions. Talk to the dietitian or person in charge of food preparation. Go over the menu plans, discuss the foods your child can and cant have, and talk about the importance of using clean utensils to avoid cross-contamination. If you feel comfortable with the persons understanding and acceptance of the diet, give them the opportunity to accommodate your childs special diet. You always have the option of sending in your own meals if you think its not working out. If you are interested in your childs legal rights to reduced-cost school lunches, see Kids with Celiac Disease under Section 504. Talk to the adult lunchtime supervisors. Kids will swap food. Its an age-old tradition, and its not likely to stop with your child. Aside from the likelihood of getting gluten, your child may end up hungry. Sometimes your childs goodies are better than the other childs, and it makes your child so proud that shell gladly give them all away, to be left with nothing. So the best you can do is explain to your child why she cant trade food with her buddies, and make sure the lunch area monitors are keeping an eye out for swappers. Out of snack and lunch ideas? See Kids with Celiac Disease. Its loaded with snack and menu ideas, many of which travel well in lunch boxes and bags. Give the teacher a stash of gluten-free treats. A large bag of Halloween-sized individually wrapped candies works well, and because theyre individually wrapped, the teacher can keep them in a cupboard without the threat of ant invasions. Let the teacher know that these treats are to be used any time there is a special event during which treats will be served. Make sure the treats are your childs favorite; you dont want him feeling like hes being short-changed. Get a schedule of classmates birthdays and scheduled holiday parties. Teachers are glad to provide you with a listing of everyones birthdays. This way you know in advance when there will be parties. You can coordinate with the other childs parent, or send your child in with her own cupcake or treat. If theres a surprise event, your child always has the stash of candy youve given the teacher. On your childs birthday, bring a popular gluten-free treat for the entire class. Its best not to risk celebrating your childs birthday with gluten-free cupcakes. Its possible that everyone in your childs class might like your homemade gluten-free cupcakes. On the other hand, there may be one kid who, for whatever reason, takes one bite and spits it across the classroom, declaring, What IS this stuff? You can bet your child wont forget that incident for a very long time. Its best not to risk it. Instead, bring in ice cream bars or ice cream sundaes. Or, if you cant do frozen foods, bring cutely decorated candy bars or goodie bags filled with candy (brands that everyone knows). It will bring your child immense pleasure to share treats with the class that she can eat too (and kids like that stuff better than cupcakes anyway!). Of course, you will want to be sensitive to any of your childs classmates who might have peanut or other allergies, and choose treats that everyone in the class can enjoy. Ask for liberal restroom privileges. Many teachers restrict the number of times children are allowed to go to the restroom, or they ask children to wait until a more appropriate, less disruptive time. Let the teacher know that your childs condition may require a hasty trip to the restroom, and that he should under no circumstances be restricted from going. You may even want to establish a little code between your child and her teacher, so that he can inconspicuously dismiss himself. Its a little less embarrassing than having to ask. Consider talking to the parents at the parents-only back-to-school night. Most schools have a back-to-school night for parents only. This is a great time to talk to the other parents about your childs condition and diet. Not only will you be helping them to understand and accommodate your childs diet, but you will be educating dozens more people about celiac disease - something we should all be doing on a regular basis. Dont be mad when people dont accommodate your childs diet. Its going to happen. Someone will have surprise treats for the class that your child cant eat, and the teachers secret stash will be empty. Or someone will decide its baking day, and your child will be the only one not sampling the goods. Dont be annoyed, offended, or angry. These people arent intentionally trying to leave your child out, nor are they being insensitive. They simply forget sometimes! Most importantly, remember that your child is learning from your reactions. He will be in situations like this for the rest of his life - teach him to be gracious, politely declining the treats offered to him, and to accept the fact that this is just one of those little stones in his path of life that hell need to learn to step over...with a smile and the knowledge that people generally mean well.
  15. Celiac.com 02/12/2010 - A recent study to research thepredominance of celiac disease in healthy school children in IrbidCity, Jordan was conducted using ELISA, a common serological test forthe presence of EmA antibodies which are associated with celiacdisease. Serum samplesfrom the children were analyzed for the presence of IgA anti-tissuetransglutaminase antibodies (tTG). Samples that tested positive fortTG, were then analyzed for IgA anti-endomysium antibodies (EmA).Positive EmA results indicated the presence of celiac in thechildren. Using 868 boys &1,117 girls ages 5.5 to 9.5, the study measured the positiveserology of the children's weight and height, Body Mass Index (BMI)as well as blood samples from the children to determine theprevalence of celiac disease. The researchers found that 16 of the 1,985 children tested, had positive EmAantibodies, and were also positive for celiac disease. The resultsfurther indicated that both boys and girls with positive EmAantibodies also showed significant height reduction compared tochildren without the presence of the antibodies. However, only boyswith positive antibodies showed significant weight reduction. The studyconfirmed that celiac disease is widespread among Jordanschool children. It also concluded that children with celiac diseaseare prone to lower height, weight and BMI compared to children withnegative EmA antibody results. Sources: http://7thspace.com/headlines/334475/serological_screening_for_celiac_disease_in_schoolchildren_in_jordan_is_height_and_weight_affected_when_seropositive.html
  16. Celiac.com 05/12/2006 - Dear Colleagues in the Celiac Community: We would like to provide you with a progress report of the Celiac Management Clinic (CMC) at Stanford Medical Center. Realizing that many physicians and gastroenterologists have a limited understanding of the frequency of Celiac Sprue in the population and the subtlety of the clinical manifestations of this disease, we instituted the CMC at Stanford Medical Center in January 2005. This clinic is staffed by Dr. Gail Pyle and myself. A large number of patients who carried the diagnosis of Celiac Sprue have chosen to be seen in consultation--the majority of these did have Celiac Sprue, as estimated from blood antibody tests and the small intestinal (duodenal) biopsy. For many of these patients, comprehensive emphasis on gluten exclusion has been very effective in eliminating symptoms and the malabsorption of nutrients. However, both in this patient group and in those healthy gluten-free Celiac volunteers who participated in the trial supported by the Celiac Sprue Research Foundation in collaboration with the Palo Alto Medical Foundation on pre-treatment of grocery store gluten with a special peptidase(1) there was a surprising discovery. Fully half (~50%) of those presumed to be in remission from the disease had malabsorption of important nutrients. This major finding was a surprise, and it gives us pause concerning Celiac Sprue therapy. Is gluten exclusion not optimal or is it insufficient therapy for this large proportion of Celiac Sprue patients? The concerns about the effectiveness of long-term dietary therapy in Celiac Sprue have prompted us to reassess our approach to this disease. For those of you who reside within reach of Stanford Medical Center, we invite you to visit us at the Celiac Management Clinic for an up-to-date assessment of the status of your Celiac condition. If you are the one out of every two healthy Celiacs with malabsorption, we will take a comprehensive approach to determine the reasons and to facilitate your return to complete remission. If strict gluten exclusion is insufficient to achieve this, we offer other approaches. Indeed, by the end of this year or the beginning of 2007 in collaboration with the Celiac Sprue Research Foundation, we expect to be able to determine the effect of an oral pill therapy for those who continue with malabsorption of nutrients. Stanford accepts most PPO insurance and MediCal and MediCare outpatient coverages. Those who suspect they have Celiac Sprue based on symptoms or blood antibody tests will be seen by Dr. Gray, and those with biopsy-verified disease will be seen by Dr. Pyle. For an appointment, call 650-723-6961, and please state that you wish to see us at the Celiac Management Clinic. Sincerely, Gary M Gray, M.D. Professor of Medicine, Emeritus (Gastroenterology) References: Pyle GG, Paaso, B Anderson, BE, Allen D, Marti T, Chaitan Khosla C, Gray, GM. Low-dose Gluten Challenge in Celiac Sprue: Malabsorptive and Antibody Responses. Clinical Gastroenterology and Hepatology, 3: 679-686, 2005. Pyle GG, Paaso, B Anderson, BE, Allen D, Marti T, Li Q, Matthew Siegel, M, Khosla C, Gray, GM. Effect of Pretreatment of Food Gluten With Prolyl Endopeptidase on Gluten-Induced Malabsorption in Celiac Sprue Clinical Gastroenterology and Hepatology, 3: 687-694, 2005.
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