Child with Celiac Getting Bullied at School. Mom Needs Help.

getting bullied for having celiac disease

Confession time. I was bullied mercilessly as a kid. Pretty much from 2nd grade to 6th grade. Even my “best friend” joined in when with others. Mike Perry…if you’re reading this…there’s a special place in hell for you.

And why was I bullied? Cause I was an easy target in the eyes of the bullies. I had long hair. I was extremely shy. I had no confidence. I’m not remotely saying it was my fault (or it’s ever anybody’s fault) for getting bullied, but it made me a target for sure. It wasn’t until middle school that I found my footing and found my friends. But I’m sure the emotional scars are still there.

This leads me to today’s email. It comes from a mom whose 8-year-old has celiac disease, gets food thrown at him at school, and the school is not remotely providing the protection the child needs and deserves. She needs advice from someone who has been there. Here’s what’s going on:

I’m the mother of an 8 year old son who was diagnosed with Celiac a year ago. He was very sick by the time they figured out it was Celiac. Hair loss, neuropathy in his hands and feet, weight loss, stunted growth headaches. The list goes on and on.

I met with the school last year and only asked that they wipe down the tables in the cafeteria and classroom after lunch. I also asked that the teacher have the kids wash their hands. The first week of school a student threw food at him. I went in to the school and spoke to them personally about it. The same student did it again two weeks later. Over the course of the school year there have been 6 episodes of food being thrown and two episodes of taunting him about Celiac in the classroom.

Believe me when I say I have been very present in the school and adamant that they put a stop to it. At the end of the school year, I asked that they move my son with a few friends for third grade for peace of mind and comfort. I knew these friends understood his illness and would never throw food. The school never did this to my dismay. They also haven’t solved the problem with the cafeteria and the constant food throwing. I asked them to hire an aide to supervise their table and they have refused.

Do you have any idea what my rights are or how I can put a stop to this? I’m worried sick about him going back to school in a week. This must be some kind of violation against the Americans with Disabilities Act. Any advice would be so appreciated.

A few thoughts on my end:

  • We have a case here of life imitating art. Back in 2013, Disney had a show called Jessie and in one of the episodes, they make fun of a boy who was gluten-free. And yes…they throw food at him. Sound familiar? The celiac community was so incensed, we started a petition and Disney cancelled the episode right before it was about to air. Here are the details.
  • Sadly, bullies are a way of life. Even in second grade. It is 100% up to the school to put an end to it.
  • A big eff you to the school for not moving the child to a class with a few friends. It’s third grade for crying out loud. Who is being harmed by it?
  • I strongly recommend you read this page on the ADA website. It deals with celiac disease, gluten-free and the ADA.

I wish I had a better answer for you. Mostly I just feel sad. I’ve received similar emails from other parents so I’m hopeful someone out there has some sound advice. Anybody out there?

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33 thoughts on “Child with Celiac Getting Bullied at School. Mom Needs Help.”

  1. Have you filed a police report yet? Throwing food at someone is assault, bullying. Maybe the school will listen if they know you are serious. If you can give us the school contact info, we can all call and tell the powers that be that we are not going to take this BS from anyone!

    1. Based on my experiences…
      Send an email or certified letter to the principal and superintendent explaining that if another incident happens, the police will be contacted for assault. Also explain that the school will be held responsible for their inaction. Recommend that the SRO come to the school to explain to the bullies and their parents that they are risking assault charges if there is another incident.
      Explain that it is a very safety violation because of the autoimmune disease, which can make the child sick for an extended period of time. In addition to assault, I believe this is a violation of Title IV. Explain that you would prefer to work with the school toward a swift and effective solution, but will explore legal action if there is another incident.

      1. Based on my experiences…
        Send an email or certified letter to the principal and superintendent explaining that if another incident happens, the police will be contacted for assault. Also explain that the school will be held responsible for their inaction. Recommend that the SRO come to the school to explain to the bullies and their parents that they are risking assault charges if there is another incident.
        Explain that it is a very safety violation because of the autoimmune disease, which can make the child sick for an extended period of time. In addition to assault, I believe this is a violation of Title IV. Explain that you would prefer to work with the school toward a swift and effective solution, but will explore legal action if there is another incident.
        Also, put an IHP in place. It is stronger legally – because it is medical

  2. Does he have a 504 plan? The nurse who did our daughter’s was very knowledgeable about celiac disease and gave her teachers lots of information about it. Then it becomes the law that they have to do the accommodations. As far as asking the school to wipe the tables, could you just send a small package of wet wipes in his lunch box so he can wipe his own area? And I’m not sure it’s necessary for the rest of the class to wash their hands. My daughter doesn’t even wipe her area at lunch. She just eats over her lunch box and doesn’t touch anything else. My advise to her has been that she can’t control others but she can control herself. If she doesn’t put her hands in her mouth and always washes her hands before she eats, that’s much more manageable. And her numbers are fine now. Down from 130 at diagnosis to 5.1 most recently. And definitely keep bugging the principal and then the district if they don’t address the bullying…

    1. I agree with Jessica also. Even if he has some Clorox cleanups for more intense cleaning instead of wet wipes, it is better for him to be able to control the situation. Making everyone wash their hands is putting him at the center of an “undesirable task” (especially to a child), so if you can remove that burden, I think it’s a good idea.

    2. Yes! My youngest who has Celiac and Crohn’s Disease does this . I do pack her a little pkg.of wet wipes and she often times uses it for her table spot. She is in special ed so she is already looked after but elementary school definitely was the worst for trying to get the school to work with me even with an IEP. Sometimes you have to go over their heads to get results.

    3. Thanks for your feedback Jessica. He is on a 504. The tables would be wiped even if I didn’t ask them as they do so in between classes. I do send him with wipes and he has become very knowledgeable about cross contamination, but unfortunately the food being thrown is actually landing in his food. It’s usually goldfish or cereal being thrown. One child grabbed grilled chicken out of his cup and threw it back in. The students also seemed to discuss it in class frequently and he was embarrassed. He doesn’t want to talk about it or have special accommodations. While I hoped the kids would wash their hands in class since they also eat snack there, the hand washing in class was done due to other food allergies in the classroom and not my sons. I send him with his own lunch everyday and ask him to keep everything in the lunch box. After 6 episodes in the cafeteria and persistent taunting in the classroom (which I can’t even understand why they know he has Celiac as he doesn’t discuss it), I have met with the nurse, VP and Principal with no luck. At the end of the school year, I thought it would help to move him with a friend so he could just sit next to this person in peace. I also asked they brainstorm a solution to the continued food throwing in the cafeteria and get back to me. My sons doctor also sent a detailed letter. Nothing has worked. I’m now scheduling a meeting with the Superintendent. Thanks again for you feedback.

      1. Kim, how awful! What if they were throwing peanuts at a child with a peanut allergy? I think meeting with the superintendent is right on! And if that doesn’t help can you switch schools?? A private school? A charter? Good grief! Throwing the food in his lunchbox and the school won’t do anything? Sigh.

      2. Meeting with a Superintendent might help. Public schools are responsible and liable for the safety of the children who attend them. If your son is getting his food contaminated, then he is not being kept safe. Make sure the Superintendent knows you will legally hold them responsible for your son’s safety when he is at that school.

  3. I agree with Jessica,

    having all the children wash their hands (which should be done anyway), only signals out your child even more. The 504 plan will help bring awareness to the teachers, aides, and principal (as well as the school nurse). They are required to make accomodations if reasonable, but I found that there wasn’t much that was necessary except allowing extra bathroom breaks if needed. However, having a sit down with everyone to go over the 504 alerted the administration to the seriousness of the situation and the expectations I had for the classroom. As far as the bullying is concerned, if not addressed by the teachers, and then not the principal… you take it to the super-intendant as well as a local child advocacy group in your area. And police report will definitely get you the attention. However, it might not be the attention you our your child is looking for.
    Start with a 504
    Explain your expectations
    Explain under no circumstances that food bullying is not different from any other bullying, and can’t be tolerated
    Explain if situations do not improve, further action will be taken.

    I’m sorry you have to go through this. My daughter’s school and classrooms have been amazing. And her friends always stand up for her. We are hitting tweens, and with the hormones rising… she needs all the support she can get. Feel free to reach out to me at ANY time. GDude has my info and I give him permission to share.

  4. The 504 plan is a start. I was getting resistance from a HS principal for ADHD, etc. So I went to the national American Disability Acts website and they have a cut and paste letter you can use.

    They cannot deny you. Their are also Child Advocates in your area. Schools tremble in fear when they come in. Use it, know your legal rights and don’t be afraid.

  5. Let me start by saying that I am so sorry that you and your son are enduring this. This disease is so difficult to manage, and the social aspects are always challenging. The bullying is absolutely inexcusable and disgusting. I’m sending hugs and positive thoughts to you both. And the good news is that the law is on your side.

    Call the ADA information line and speak to a DOJ attorney. https://www.ada.gov/infoline.htm; 800-514-0301. They are exceptionally helpful as advocates.

    And while none of this is your son’s fault, I agree with giving him more tools to give him back some control — some clorox wipes so he can wipe down his table may give him a sense of comfort if nothing else.

    Also, your 504 is an important legal document. I drafted one on my own to take to the school so that they did not just give me one that they wrote. Then we discussed what needed to be included; don’t sign it unless you are in agreement and they include all the elements that you feel are important.

    If the principal is not protecting your son, call the school board.

    Also, your state department of education should have resources to assist you.

    Get help behind you and beside you so it’s not you and your son versus the school. They need to be educated about their obligations under the law, let alone as adults who are tasked with protecting, valuing, and teaching our children.

    Also, consider getting together with the parents of the kids who are his friends and are supportive. Give them a chance to ask questions and let them know that you need their help, and how much you appreciate the support of their children. That may go a long way to shoring up advocates and support for you.

    And if the school ever gets its act together, consider asking his teacher to present to his class. My son and I gave a talk to his class when he was 7 or 8, explaining his celiac disease, what happens to his body with gluten, and how he has to change his diet. We gave the kids the opportunity to ask questions, and it gave me the chance to gently confront the kids who snorted and laughed while we talked. It led to discussions of the problems that everyone faces (the kids had lots of ideas — I have an allergy; my aunt has a cane; my mom has a …), and to talking about understanding, empathy, bullying, community, etc. It helped a lot, and really made the celiac disease no big deal. But it was only effective because we had the support of the teacher and principal.

    I wish you both the best of luck, and a much better school year.

  6. I agree with the Clorox wipes and a 504. This will help get things started.
    Sometimes you have to go drastic for them to realize this is not ok. Threaten to call the local tv station. Threaten to call the police because it is assault. Lastly contact the Superintendent. You have been multiple times to the principle. It’s time to move on to the higher authority. As a former teacher I am shocked that the principal hasn’t done anything yet. So your next step is to set up a meeting with the Super. Let him/her know that you will take all actions necessary to get this to stop.
    I am so sorry. My heart aches for you. Hang in there!

  7. Jessica’s suggedions & Ami’s are just awesome. Every single response above has fantastic ideas and resources too.

    I definitely think your son can control his area at lunch without the whole class being required to change routine. It does make him stand out. Lunchbox is valuable tool, physically for preventing cross contamination, and personally by giving you a POWERFUL OPPORTUNITY to make his good spectacular!!

    Can you make his food more interesting, to where other kids WANT what he has? Be creative, si his food is great, not weird or seen as completely different.
    Make safe GF treats he can share with his good, close friends (if food sharing is allowed, most prevent it for the exact reason to safeguard kids with allergies & Celiac!). If the other kids knew his food WAS normal, and even great, they may not see Celiac as worthy of taunting/teasing, as sad as that sounds. They dont understand is part of it.

    Definitely stop requiring the class to be different due to your son. That may give way for teasing. Automatically they must do things they wouldn’t need to otherwise, this stands out. Your son need not be different. His food can be normal looking (or even better than what the others bring.)

    I’m being repetitive, sorry. I just hope that my loint can be heard that your son need not srand out due to Celiac, unless it’s in a positive way.

    I’m sorry this has happened. It’s horrendous that school personnel haven’t helped. Follow advice above, it is spot on. 2nd & 3rd grade is so young, I truly hope this year goes better and your son is given the respect he deserves. Best wishes!

  8. This breaks my heart. My Celiac 9 year old was bullied for months last year. It was terrible. Like your son, she was ganged up on, but also had a circle of friends who stood up for her. I talked with her friend’s parents regularly and the kids met up outside school to show support. After months of the school not getting a handle on it, we ended up switching classrooms. The last months of the year were better, but if they weren’t, I would have switched schools.

    I agree with the 504 and Clorox. Organize some parents to volunteer to better supervise lunches. Get the superintendent and police involved. Show the school and your kid that you are taking this seriously. There is a guy who comes to schools for assemblies that we haven’t had yet, but maybe showing the video to his class might help:
    http://www.kyledine.com/

    This book is geared towards girls, but my daughter found the message incredibly powerful and read parts over and over, like a mantra: Stand Up for Yourself & Your Friends: Dealing with Bullies & Bossiness and Finding a Better Way by American Girl. Might be worth copying pages and whiting out the AG branding.

    Hang in there. You are not alone.

  9. Hello, I am sorry you are going through this, although not fair, I have pack my child’s lunch everyday (that has celiac), and I asked the teacher when snacks are brought in to let me know, and I pack a separate snack. This way no one needs to worry about what type of food and who has handled, or having the tables cleaned. (Eat on the provided lunch packs from home). In situations where unsure about food, do not eat, and quitely can have a gluten free granola bar that is in backpack. People are just unaware of the effect this has. If your child can deal with this, than it will not be an issue for other children. It will never get better if you ask for special circumstances (mine is now just started high school). The behavior you have experienced is unacceptable and should be punished, but everything will be better in the long run if you can take care of these items yourself and not put extra requirements on others.

  10. Way to go Celiac community! These posts are spot on! The only thing I have to add is that you should have the school nurse on your side. He/she is the ticket to keeping your son safe, and if he/she’s not proactive in this, then he/she’s not doing his/her job. The nurse knows (or should know) how debilitating this disease is, and how important being completely gluten-free is, and should have some ideas for your 504 too. If you do not get a proper response from the nurse, definitely call the head of the school district’s health dept. The school needs to be responsible for nipping this reprehensible behavior (both children and the administration) in the bud. They’re not doing ANY of their kids any favors by letting this continue.

  11. Agreed on the 504.
    If this was my child I’d be filing a police report. They have been spoken to repeatedly and have shown they don’t care. Legal recourse may be needed on both general bullying and harassment as well as assault charges. Seek legal assistance and do not give the school/district any lead warning that you are doing so; do not give them time to construct the layers of BS they’ll spin and spew to defend their inaction and failure to protect your child.

  12. I have no experience with the possibility of filing a police report. I can speak from the education perspective as I work in education and regularly deal with special education and 504 plans.

    HOWEVER, since you already have a 504 plan in place it is time for you to contact the Office of Civil Rights with the US Dept of Education and complain about the violation of his rights as a student with a disability. Trust me – the last thing any school wants is an OCR complaint. Here is the link to file a complaint: https://www2.ed.gov/about/offices/list/ocr/docs/howto.html?src=rt

    These complaints are a pretty big deal at the school level. The school will be required to respond within a specified period of time. Be sure to share the documentation of all you have done to resolve this at the school level first. No child should have to endure the bullying your son is experiencing. If the school will not protect him, then it is time to for you to bring in the feds, so to speak.

    Now, you may also find a similar office at the state level in your state department of education. You can check there also.

    Good-luck! You are your child’s most important advocate.

  13. I’m a junior in high school, and I was diagnosed with celiac in 6th grade. It was very rough when I was first diagnosed, and some kids made fun of me. However, I brought my own lunch every day so that there was no cross contamination, and brought my own snacks. Throwing food is absolutely unacceptable, and those children should be punished with detention or something similar, but don’t file a police report; that’s absurd. They’re in 3rd grade. I know it can be hard, but as someone currently in the public school system, a lot of what you were asking of the school is not feasible. While you could ask for your own child to move classes, you can’t ask for his friends to also move classes, do you realise how difficult that is? You have no say in what class his friends are in because you are not their legal guardian. Moving his friends along with him would mess up classes for many other children too. Hiring an extra aide just for one child is completely unreasonable and much too expensive. The school does not exist for only your child. My advice is that you make sure that your child washes his hands, packs his own lunch, and bring clorox wipes if necessary. Or, if you can’t deal with that, home school him. Having celiac sucks, but it’s not the end of the world, and it isn’t a disability.

    1. It is good to hear from a kid with Celiac but I have to disagree. Plenty of students have AIDS just for them, if that’s what they need. The school must step up and take responsibility for the mean culture that exists and figure out how to fix it long term. In the meantime they have to keep this child safe from bullying.

    2. “Having celiac sucks, but it’s not the end of the world, and it isn’t a disability.”? For some Celiacs it is a disability, depending on what symptoms they have and the severity. Until the root cause of CD was figured out many children died from what was then called “wasting disease” and adults sometimes also met the ‘end of their world’. Fortunately today death is rare, but some do suffer serious disabilities. You are strong and obviously dealing well with CD, but that’s not always the case with every Celiac. Unless you know the whole story with all the details and history it’s best to empathize and try to understand, even when it doesn’t make sense to you and not generalize or judge what they are going through. Stay strong. You’ve been diagnosed early and should be able to avoid some of the more severe symptoms suffered by those who were not diagnosed for many years.

  14. I am so sorry that your child’s school is not being cooperative with you! I’m an educator and feel like trying to communicate directly to the teacher is always the first step. I can’t fix a problem that I’m not aware of. Like it or not, we don’t always catch or see everything. If the teacher doesn’t act on your concerns, move right on up the line to administrators, then the superintendent. In the meantime, request that a 504 be put in place that requires the school to follow what that plan states. If the school doesn’t comply, then get a lawyer. Trust me, that will make them try to work with you, but let that be the last resort. You might even request your child be moved to another class or even seek premission to attend another school. The best thing you can do is setting up his 504 plan. Best of luck and I’m sooooo sorry you are going through this.

  15. Absolutely you need a 504, even if your son doesn’t want one. Teachers or other education professionals sharing with students or parents that your specific child (i.e. a teacher blurting out to the whole class “Mark can’t have gluten”) is receiving accommodations or what the accommodations is a violation of student confidentiality. A 504 plan is legally binding, and there can be serious consequences for not following a 504 plan.

    I second just sending him with clorox wipes so he can wipe his desk. I’ve had great success with it, and as a teacher I come into contact with my students and colleagues who eat all sorts of gluten. I have never gotten sick at work because I’m very careful about what I touch after I wash my hands.

  16. Wow! I cannot believe that is happening. Kids are allowed to throw their food in the cafeteria and it is landing in your child’s food? That is absolutely unacceptable. I am a teacher with celiac disease and I have been in many elementary school cafeterias and never has food throwing been tolerated. Students would get a minimum lunch detention the next day. If it continued that should be a required parent conference with the child’s parent that is throwing food. Unfortunately, this is sounding like bad classroom and school management. Those behaviors should not be tolerated. I sure hope the super intendent is able to solve the problem. However, if this is the culture of the school you may want to consider other options.

  17. So sorry you are going through this. Since you do have a 504, you can escalate. The superintendant’s office should be able to give you the contact info for the inidivdual over the district’s 504 plans. Calldaily for a meeting to review the 504 (and ways it has not been followed) until it happens. We’re big on the squeeky wheel.

    We keep meal bars with our son’s teacher just in case he drops his lunch or something happens. He has a huge list of allergies and it is in his iep that the district can not supply any food and only water. He uses his lunch box as a barrier and is dilligent about washing his hands. In your case, the bigger issue is that the child throwing food has not had consequences it sounds like.

    While our son doesn’t have a Celiac diagnosis, he is severely allergic to wheat and exposure causes cerebral ataxia. We had plenty of incidents in Kindergarden last year where oh they’re dried noodles, they’re fine or class parties with wheat all over. I cleaned the classroom myself. We also inquired about hand washing but it was not followed through. He came home with hand prints (hives) on his arms from playing after lunch last year, so we understand. All he can do is wear long sleeves and pants everyday, use wipes on everything and wash his hands every chace he gets.

  18. first, I am so proud of the mom. 2nd: the school is liable, we’re talking legal action. 3rd: that’s what the superintendent and the school board are there for. If mom has met with teacher, and principal, then it’s time for a meeting with the superintendent, if that doesn’t make a change, then the school board and hire a lawyer. NO CHILD should be bullied, shamed or be subjected to that kind of ABUSE. Good luck MOm and young son. I too had a child with a disability no one could really see, and it’s a tough place to be.

  19. Fight, fight , fight for your child’s rights! If used properly, the 504 puts the power in your hands, not the school or district.

    My son has a rare bone disease (fibrous dysplasia) and was diagnosed ADD at 5 years old. He’s had 5 surgeries by age 16, 3 of which required him to be in a Spica cast for months afterwards. We had to home school him during those times, so between the disruptions and his severe ADD he struggled when he was in school. We had serious issues when he was in the sixth grade, in danger of flunking and having to repeat school year. We went rounds with the teacher who refused to cooperate with our requests until we called for a conference with the teacher, principle, nurse and a school district representative. The teacher started the meeting telling us what our son had to do. We cut her off and told them all we were not there to hear what their plan was. We told them we had a 504 started and the meeting was to determine a plan forward satisfactory to us, not them. The school district rep, much to the principle and teacher’s dismay, interrupted and said,” I didn’t know you had a 504 plan, let me get the proper paperwork from my car and we can work this out right now.” It was a tense meeting and I’m sure the principle never wants to see me or his mother again, but with a new plan in place he finished the school year with good grades and is now in the last year of the masters program for Psychology at CSUF. Don’t be afraid to push, challenge and if necessary yell. And if that doesn’t work get an attorney. Your child’s future is more important than any adults ego or agenda.

  20. When my daughter was about that age she was diagnosed. She experienced some teasing and harassment. I went to the school with some gluten-free goodies and I sat in a circle on the floor with the kids and taught them about what we just found out. They all tried the food. It diffused some of the unknown that the kids were lashing out about. The culprit of that whole thing eventually bought herself a gluten-free cookbook and made my daughter gluten-free treats.
    You don’t face bullying with more fighting. You won’t win. If your child is at a school that this kind of conversation is not permitted, then yank your kid out of that school and find a school that supports peace and actual teaching.

  21. I am a public middle school teacher. If I am understanding the situation correctly, the child has a 504 plan in place. The parent has requested reasonable accommodations for her son and the accommodations are necessary to maintain his health and well being. Other than writing up a 504 plan, the school is not showing due diligence in providing a safe space for the child to eat his lunch and they are not showing due diligence in preventing bullying from going on. As a parent, I would contact the principal one more time requesting that the 504 accommodations be followed, that a safe lunch space is provided for the child and that the bullying is addressed. Let the principal know that if things don’t change, then a lawsuit will be filed for failure to provide safety to the child and for failure to follow the 504 plan. Don’t be afraid to sue. We had a family sue my school district because their daughter, who was on a 504 plan, wasn’t provided with swimming during her phy. ed. class. The family won the case.

    1. You rock, thank you Lyn! There is NO excuse for abuse, especially in the school system! Children should feel protected and safe in school.

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