A 504 Plan for Celiac. What is the Right Thing to Do?

celiac 504 plan

This email poses a great question. Do I do what is right my MY situation? Or do I do what may not be necessary, but will make it easier for others in a similar situation in the future?

She needs a solution in 48 hours so time’s a wastin’. Here’s the email.

Greetings Dude,

Long time listener, infrequent commenter, first time caller.

My 13 year old daughter has Celiac Disease, no one else in the family does. We keep a Gluten Free house, and Mom and Dad stay GF while we’re out with her. She was diagnosed 4 years ago, and our lives have adjusted pretty well, although not without the usual trials and tribulations. (Curse you NASCAR! and Kelloggs for canceling GF Rice Krispies!)

My wife and I have a topic that is specific to my daughter’s education, but falls under the larger topic of “What accommodations do Celiacs need or want? We are talking to my daughter’s school district about creating a 504 plan; this is an official document that officially records her disability and the accommodations that the school district MUST make for that disability. If it states something must be done to accommodate the student and the school district fails to do that, they are open to legal and other penalties.

These documents are really meant to talk about what the school district needs to do once, then to make sure they keep doing it. It’s not a “the school district will make their best effort to make these accommodations” document. It’s a “Do this or else you are open to legal action” document.

So we looked at a sample of a 504 plan for another student with Celiac Disease. In her document, there was a long section of what the cafeteria was required to do to safely prepare a Gluten Free meal. New utensils, hand washing and new gloves, separate toaster, etc. It was very specific and just the kind of policy you really hope is in every commercial kitchen that offers separate GF options. The thing is, my daughter has always brought her own lunch, even before she was diagnosed, and her sister, who is non-celiac, doesn’t eat the cafeteria food either. (They’re food snobs, what can I say?). I can’t see us ever needing the policies around the GF cafeteria options, so the question is, should I have them included or not?

On the leave-them-out side, we are part of a typically under-resourced urban school district, and requiring them to spend extra resources on something we don’t need and won’t use seems really wasteful. Also, the stuff we want in there, field trip accommodations, snack food locker on campus, no bathroom restrictions, etc., we really want in there and want it to be followed to the letter. If we have a big section that we just ignore, does it make it easier to ignore the rest? Finally, we’re a go-along-get-along kind of family, and if we don’t need something, why ask for it?

On the put-them-in side, if we don’t mention the cafeteria, then do we make it harder for the next kid with Celiac Disease. “Well, Jenny (not her real name) has Celiac and didn’t ask for any of this cafeteria stuff, so why do you need it?” It’s not the kind of thing you want to amend. And they should do it because, well, it’s the right thing to do.

Right now, we’re thinking about putting in a “for activities as required” clause. So we can list everything, field trips, snacks, cafeteria, then say “We don’t require the cafeteria part”. That way it’s part of the official document, but the school district doesn’t have to change their cafeteria for us. But, we’d thought we put it out there for Dude-Kingdom to comment on, if you thought it was interesting enough.

After your reading the last letter you posted, from 2014, we’ll be long past the decision point, but I thought it still might make for an interesting discussion.

I love everything about this email.

I love the fact the parents stay gluten free with her.

I love the fact that she cares enough about the future celiacs and not just her situation. Note to most people: The world would be a better place if we ALL behaved this way.

I love the fact that she also does not want the under-funded school to waste resources on something that does not apply to their daughter.

I love the last zinger she gave to me about taking too long to get back to emails. Well deserved 🙂

And I love the fact that she answered her own question pretty much as I would have. The cafeteria clause NEEDS to be in there to protect future celiacs. But at this point in time, there is no need to follow through on it for their daughter.

I think this is a win-win, but never being in the same situation, I could be completely and utterly wrong. It wouldn’t be the first time.

What do you think folks…what would you do?

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56 thoughts on “A 504 Plan for Celiac. What is the Right Thing to Do?”

  1. This is a great question and I think they absolutely have the right idea. My only other suggestion might be, when they add the clause, to explain why they are not requesting cafeteria accommodations and that future celiacs requesting a 504 may very well need them. That way it will be documented and there will be no question in the future as to why they waived this particular part.

    Also, I hate that the 504 refers to celiac as a disability. I understand why it falls in that category, but I still hate it!

    1. Celiac is a disability. There are varying stages of damage depending on multiple factors like age of diagnosis, length of active disease, gene type, etc. I went 30 yrs undiagnosed. I was diagnosed with 4 other autoimmune diseases (secondary) before finding the root cause, celiac (the first autoimmune disease). I am now 3yrs in and haven’t responded well despite living as a recluse. My daughter also has celiac and when she gets glutened, like me, she is down for weeks. Diarrhea and abdominal issues were symptoms looked for in children to diagnose until last ten years, still are in the south. I NEVER had diarrhea. Ever. In fact, I had constipation. I didn’t know any different because that was my normal. Nobody ever suspected celiac despite anxiety, fatigue, exhaustion, precocious puberty, endometriosis, pain, leg cramps entire childhood (Dr said “growing pains”), headaches, low iron (but not enough to say anemic), overweight (yep, if I ate what other kids did I would of been 300lbs!), lymphaedema (started after menses in legs but wasn’t diagnosed until my 2nd year after celiac dx!), add (didn’t take meds), speech deficit, the list goes on. I couldn’t get a Dr to even do any test past lab work until I lost 50lbs as a 33yr old and diarrhea was up to 20+ times a day. Even then, diarrhea was from a secondary dx of collagenous colitis which is still not in remission!! Once discovered, I aged 10 yrs, my body gave out, and I was told if I made it past my first year of tx, I was lucky. My body had compensated my entire life but once dx, I couldn’t any longer. I nearly died. I still have not recovered nor built up anymore reserve. Too much, too long. I can tell immediately now if something has gluten because I entered stage 4 and extremely sensitive as well as learning my gluten symptoms. I didn’t even know I had allergies to chocolate, corn, soy, nuts, tree nuts, beans, soy until 6mo into going GF! I cringe when I speak with other celiacs who eat out or share a gluten kitchen because they don’t have symptoms. I feel like they have been deceived and celiac has been played down to them in a dangerous way by their treatment team. I never felt GI symptoms until the colitis. My daughter has celiac. She has chronic constipation we are working through, however, her main symptoms were not GI but asthma, seizures, and sick with upper respiratory infections at least 2x per mo (which I don’t think they were at all). Since going gluten free she has been truly sick once. Never took another puff of the 2 daily inhalers or took allergy meds or an antibiotic since! Trust me on this, celiac is not well understood, and every time you are glutened, damage is done to your body, wether you feel it or show it physically or not. Disability, yes! If you go by feeling symptoms only, I truly believe people will die years before their time. If not treated like a disability then ALL celiacs, stage 4 type 1 and 2, who have 5 yrs left, can’t get help. Celiacs with stage 2 can’t get help to prevent entering stage 3 & 4 and developing secondary autoimmune disease(s)! Lupus and RA are a disability. Everyone understands it’s serious, Drs. Understand process. Celiac does just as much damage. Maybe more because symptoms are so vague, Drs. Don’t even consider testing for it. I think doing entire 504 is a must. I also have to homeschool because our 504 (with her taking lunch and me going everyday to school with her to help staff still wasn’t followed, people don’t get it, they don’t have resources) at brick and Mordor school was too difficult. I should of fought harder but I was so ill then that I had to priotize my energy. People will never get it though until some of us force the 504 to be enforced. My time is short, I am going to be selfish and skip getting glutened daily while trying to teach my local school how to accommodate my child. Sorry, but I have to focus on her only with my time left. I encourage others, especially parents who aren’t sick, to fight for our safety. Thanks.

  2. My daughter has a 504 plan (she is in 2nd grade). They don’t even have a cafeteria, don’t allow food at classroom birthday parties, only allow fruit/vegetables at snack time and classroom parties and I still find it important. My biggest concern is the art room. This year the 5th grade classroom were using papier mache and because I had worked with the art teacher in advance she knew that the papier mache could not be made in the art classroom (she made it at home so that there was no flour floating around) and also DOUBLE cleaned the art room after the 5th graders were done. In addition, the 2nd grade classes have a growing science experiment which (usually) includes growing wheat and rye. The science coordinator orders the supplies for the experiment in the fall (for spring). By having a 504 plan in place in advance any issues were completely avoided (they grew Kentucky bluegrass instead:-). I think it is very important to have one for your kid and for future celiacs.

  3. I have had 504 plans for both of my children for other reasons (and they are both gluten intolerant so I get it). 504 plans are specific to your child’s needs. If your child brings a lunch everyday (as did mine) then don’t concern yourself with accommodations for the cafeteria. Someone else may need those accommodations and by law the school has to provide. Therefore, not having accommodations for the cafeteria will not impact someone else who may need them. Also, any time you need to change/add an accommodation, you can, by law. Another thing I did was send in GF snacks to have on hand in the classroom so my child could participate if there was a party etc. I also met with my child’s teachers or sent an email at the start of each school year to discuss his 504 to make sure they understand. Even though the 504 plan is in my child’s record and the teacher has it, I still made it a point to discuss it. Makes a difference. Good luck!

    1. Would anyone be willing to send me a copy of their 504 plan? I’m in the process of drafting one up and am having a hard time 🙁

  4. An other student with celiac disease may require such accommodations in its 504 plan. The plan for your child could certainly reference the dietary requirements of a kitchen providing food for your child, and it seems an oversight to not have hammered out that information and understanding in it, as you appear to be an excellent advocate for only for your child but for your neighbor’s child(ren) and the school system as well. Who’s to say that there may be a occasion where that school kitchen would benefit from having those requirements known and understood.

  5. Even though your daughter’s district has low funding this is a change they will need to make sooner rather than later. Celiac disease and gluten sensitivity aren’t going to go away and while your child doesn’t need the special cafeteria accommodations another child surely will. I think it’s great to bring it to their attention now so that the district can start planning to make those changes.

    Side note… Good for you for thinking of not only your child’s needs but those of future school participant’s as well. Sometimes as parents we feel like we have to battle to get what our children need in school. Just know that your efforts aren’t wasted and parents who interact with the school later on this same matter will be very appreciative that you’ve paved the way.

  6. I completely understand your predicament and your position. My daughter is also in an underfunded urban district, while my son is in a parochial school. I worked with my daughter’s school in developing the 504, writing a draft on my own, then reviewing it with the school social worker who is tasked with coordinating these plans. I also met with her vice principal and the cafeteria manager, as my daughter does not eat in the cafeteria either (the line is, apparently, too long). By documenting as comprehensively as I could, we covered all of the bases that we could think of. This has come in handy with unexpected things like science experiments, overnight school trips, class excursions, etc. By talking with the administration and cafeteria staff, I could explain the details more personally, and let them all know that Laura would not be eating in the cafeteria right now. I reached an informal agreement that if she was to change her mind, I would give them a heads-up to allow them time to prepare. It also gave them an opportunity to ask questions and walk through what-if scenarios. It’s been a fairly smooth process, but one that required learning and flexibility on both sides. The willingness of the school staff to work with us has made things much better, less contentious and easier for my daughter. At 13, she is mortified to be different, and hates the ideas of “accommodation”; nevertheless, this is her reality.

    As for my son, the diocese claims that they do not need to accept a 504 plan. I have not yet pursued whether this is true because his principal and cafeteria manager have both been willing to work with us to make safe food for him when they can (I usually supply the cafeteria with the food, that they then prepare). It’s a much different and less formal process than with the public school, but it seems to be working for now. I can’t say that this will continue, or that this is the best approach to take, especially given other kids who may come behind him. However, I’ve taken the ‘one-battle-at-a-time’ attitude for now. They do have fewer resources and coordinating staff than does the public school, so I’ve tried to be more flexible. Again, I can’t say that I recommend this approach, but sometimes we parents/advocates have to give ourselves a little room to breathe too.

    1. In my state private schools do not have to accept a 504 or IEP, but all publicly funded schools do.

    2. Private schools that do not accept any public funding are not required to develop or follow 504 plans or IEPs. That being said, many do.

  7. Personally, I think listing it, with the qualification that AT this time it is not needed, but may be in the future, would be ok. Or just leave it out. 504’s are designed to be VERY specific to each individual child.
    My son has a 504 for ADHD, but so far the school has refused to include the Celiac stuff on it or to give my daughter a 504. I will be fighting this. Most of the time it has not been an issue, but we have had problems. And our biggest problem is that they will not allow my children (8 and 9 now) to use the microwave at all, and the teachers are not allowed to do it for the students either. So they have been limited to sandwiches for the entire school year, ugh!

    I wrote out a VERY detailed letter explaining the Celiac and gave copies to the kids teachers, as well as the nurse, principle, and each special area teacher (art, P.E. etc). Both kids have their own bottles of soap, and the teachers are supposed to contact me ahead of time about parties, or call me the same day of a parent brings in treats without telling the teacher first. (personally I think that elementary schools have gone WAY over board in allowing SO many treats, but that’s a different story).

    I will yet again be trying to get a Celiac 504 for both kids next year.

    1. Look for an advocate program in your area. They can help you navigate the problems with the school, or at the very least explain to you what your legal rights are. We struggled with getting my son assistance early on (also for ADHD, not Celiac) and talking to an advocate really helped. They told me exactly what to say when I contacted the school about his needs so that the school had no choice but to listen. Not sure where you’re from but in the Twin Cities the organization I used is called Pacer: http://www.pacer.org If they can’t help you I’m sure they could direct you to an organization that can. Good luck! 🙂

    2. Val –

      we too have had the microwave issue and so far haven’t gotten anywhere, but I am pushing for it next year. So this past year has been a year of GF bread sandwiches, meat and cheese roll-ups and some chili and things put in a thermos. I am hoping for a better program in the new building.

  8. Thank you for this timely post. We are in the same boat, and at this point I have not bothered with the 504 plan, as working with the school and teachers has worked fine. I pack a lunch every day for my 2nd grader for a couple of reasons. One, her food is made at one of the other buildings in the district that then gets brought to each building. That just seems like one more place/set of hands/etc to have it get contaminated and messed up. Secondly, she too says the lines are too long and she is an incredibly slow eater. Thirdly, I have heard from other parents that do have the 504 in place and do use a “hot GF lunch program” that at times there were mistakes, or they forget to prepare their daughter’s food, etc. That child has gotten both sick from errors or cross and contamintion as well as not being prepared a meal for a day. I just don’t want to deal with that issue.

    But, I have talked with the elementary school before that they do need to be prepared for this – that more children will be diagnosed with celiac disease and accomodations need to be made. I have no concern AT ALL that the school district is not willing to comply – but more like they don’t know what to think about. The science and art classes are perfect examples!

    This post has encouraged me to work on the 504 plan for my daughter. This fall she will be in a new building, new teachers, etc, and it is a perfect time to work on getting this all set. And what a great way to educate and advocate for future celiacs in the district! Thanks for the push to get this done.

    1. and to clarify – the 504 put in place by other parents were at a different school district – not mine.

    2. I believe you are wise to get that 504 in place now. While today’s teachers are fine. Next years or the following could be a total nightmare or simply clueless,

      A 504 is NOT a confrontational document. It is meant to help all parties protect a vulnerable person. Think of it as a way to clarify for everyone how to protect this precious child.

  9. My understanding as a federally funded teacher (Title 1) private schools do not have to respect 504 plans unless they also take federal money, such as Title 1 money. Since I work in an under resourced school (but also have Celiac’s) I would not ask a school to provide resources that are not needed, such as cafeteria accommodations. I understand the desire to help future Celiacs but I think that should be dealt with in the future. Since we do have students with Celiac’s I see the difficulties it raises. Believe me, asking for an accommodation you do not use is much resented. I know the cafeteria could not understand having a GF breakfast available and throwing it out when it was not needed. The easier solution was to have frozen GF food ready as a backup.

  10. Betsy in Michigan

    This family sounds like they have the right idea. 504’s are individual to each child, however it doesn’t hurt (for themselves and others with celiac) to mention the lunchroom piece, should it be needed in the future.

    Wrightslaw.com is the best resource for legal information about 504’s. The site is very searchable; here’s just one pertinent page: http://www.wrightslaw.com/blog/?p=2831

    FYI; 504 is a Federal compliance issue, therefore not optional for any schools, even private. If you are getting what is needed, however, it may not matter. Looks like there are also some decent online sources regarding celiac and 504’s.

    1. Betsy from Michigan

      Sorry – to clarify – the part of a 504 plan that no one can ignore is that a student cannot be discriminated against (or refused admittance to a private school). But they usually don’t need to make the kind of accommodations that a public school must. There are all sorts of arcane exceptions; depending on what services a private school offers they may have to follow certain regulations. As with many individual education issues (and the gluten free life!), it requires a lot of research.

    2. Betsy in Michigan

      Sorry – to clarify: the part of a 504 plan that no school in the U.S. can ignore is that a student cannot be discriminated against (or denied admission to a private school). Generally a private school doesn’t have to provide the services of a public one, but there are all sorts of arcane rules depending on what services they do offer; they may have to follow some regulations. As with many individual educational issues (and the gluten free life!), it takes a lot of research.

      Here’s the Wrightslaw page about allergies:

  11. If your school refuses to accept a 504 for celiac, I encourage you to call the federal government’s ADA hotline, which is staffed by real, live specialists. 800 – 514 – 0301. They are helpful and encouraging, and can point you in the right direction about the law and how it applies. If you have a legal advocate in your area, all the better, but the force of the U.S. Department of Justice can sometimes be enough to sway a stubborn administration that refuses to accept that people with celiac are protected by the ADA.

  12. I completely understand not wanting to “burden” an already stressed school, but I completely think you should. I am a teacher and this is the first year any child at our school had an official 504 for celiac disease. By mid-year they were serving several because they had finally been trained on food sensitivities in the kitchen. That one child helped pave the way for other students and helped me as well since the kitchen servers (some of them) now know what I am talking about when I ask questions about the food. Plus having a 504 will help with any special events or activities in the classroom. It won’t stop parents from bringing glutenous cupcakes and such, but if it is a school sponsored event they may starting incorporating choices for students who cannot eat gluten. Also…looking ahead towards college, some colleges require you to purchase a cafeteria plan, but do not have dedicated gluten free food or areas. I’ve read where some parents had to really battle to get those expensive charges dropped from the tuition because their children did not eat the cafeteria food. Having a 504 plan from elementary through high school, may make that transition a little easier. You never know what situation may come up in the future. At least they will take your child more seriously if you have a plan in place.

  13. Need to include classroom arts and crafts activities (having the teacher wash down all desks after the kidlets make gluten-containing crafts–macaroni collages, etc). And substitute corn- or rice-based macaroni and other pasta for craft time.

  14. AS a parent of a disabled child (not Celiac), I say follow the pattern that you have read. Include EVERYTHING NOW!

    Your child deserve to have safe foods!

    They school district is required to follow only what you specify in that document. Guessing about what MIGHT happen in future and leaving out some things on the hope she won’t need it is playing with a bunch of people who are too busy to take time to understand.

    Think of this as a contract between you and the school on behalf of your child. She may never need every term and condition. Some are there for “just in case” situations that need to be in place BEFORE the situation arises.

    This will follow your child everywhere, even into college. You are planning for her future for a long time not just this moment, this school building, the next few years.

    We put things in that we thought would never be used. When we needed them, it was important that we had planned ahead.

  15. A 504 document is a personalizes one. The district can not use a blanket document for any reason. A 504 dicument is about your child’s need only and can be updated at the parent’s request. Do what is right for your situation and speak up if it needs to be changed. Another child with the same condition will still have to go through the same steps and create their own document.

  16. I am a Kindergarten teacher at a Title 1, urban school. I am also the mother of an 8 year old with Celiac. When I had my child at her home school (a small rural school), they refused a 504 (my daughter also has ADHD and is on the spectrum) saying they could just do a nurse plan. I went higher up and the head person in the district made the principal agree to a 504. I ended up switching her to my school, not trusting the school she was at to uphold the accommodations. I chose not to pursue a 504 at my school. I am in a unique position where I have a refrigerator, freezer, and microwave at my disposal. She can also eat in my classroom so she’s not around everyone else’s lunch. Her teacher is extremely accommodating with classroom materials and snacks. The cafeteria provides her with gluten free bread products. They will also let me look at any ingredient listing.

    Question….I was under the assumption that in order for the cafeteria to provide special meals, the family must qualify for FARMS (Free and reduced meals), which we do not. A paying student has the option of bringing a meal or paying for whatever they get from the cafeteria. Now, starting this week actually, every child in the district is being provided with free lunch, regardless of income status. So does that mean that they need to start providing special meals (not just a sandwich everyday)?

    Good luck! Some school systems and individual schools can either be extremely accommodating, or very resistant to it.

  17. I’m a case manager so I work with a lot of schools and parents on IEPs and 504s. Another thing you might want to put in is home ec class. Is she going to be required to cook other foods (maybe at home), is she going to be excused from class on cooking days, how do they need to clean the room to make it safe for her to return after other classes have cooked? Do the schools go on trips overnight, if so how are her foods going to be taken care of, will the school/camp/trip provide them or will you be required to? While these aren’t exactly cafeteria issues, they are food related. You will best know if these might happen in your school/district. Good Luck.

  18. What a pleasure to meet this family. They also address the dilemma that I often face: not being Celiac but having discovered that Gluten-Free saves me a huge amount of health issues means I am always balancing on the edge of what wouldn’t immediately harm me as a one-off but would be very bad for a Celiac… Especially when eating out. Mostly I go the Celiac route (makes me feel guilty but it is for a good cause ) but if there seems to be a sympathetic attitude I will discuss the issues with the chef or waiting staff. Your family are doing the best possible things and are a credit to the Celiac and Gluten-Free community!

  19. I do believe the 504 is just for the person it specifies. If you do not need the cafeteria at this time just say it, but request keeping it open for future. The safest way for any celiac to handle this is to definitely bring their own food prepared in their own safe environment. I’ve heard people with 504’s speaking about their issues and it gets ugly sometimes. I am the type of person who would take responsibility for my childs’ food over allowing strangers to do so.

  20. We started with an Individualized Health plan, which was helpful but not legally enforceable. We switched to a 504 plan — I have copied the bullet points of our proposed plan below. The school adopted all of these points with some minor wording changes. Note that many of these points talks about the accommodation and emphasizes communication with parents. We have found that regardless of the written plan, communication with teachers is essential to know what is going on in the school, so that we can know what needs to be adjusted.

    My daughter currently does not wish to purchase a lunch in the cafeteria, but there is a point in the 504 plan that includes providing gluten free lunch options, with collaboration between parents and food service providers. The cafeteria knows that my daughter does not currently wish to buy lunch and we have agreed directly with that staff that we will notify them if she changes her mind. It’s a conversation that happens outside of the 504 plan because the food service professionals are extremely accomodating.

    Other plans may include far more detail about HOW food is prepared. My feeling is that regardless of the amount of detail in the 504 plan, the best way to ensure your child has a truly gluten free lunch is to communicate on good practices with the people preparing the meals — that level of specificity doesn’t necessarily need to be in the plan itself. You might want to ask that the district food services manager be included in the 504 meeting or meet with that person separately.

    Plan points:
    • At least 48 hours’ notice provided for in-school or school-sponsored activities that the student is registered for in which gluten containing food or other items (for example, art supplies or other teaching tools) will be utilized. Parents will notify school of student’s participation in school-sponsored activities which may reasonably be expected to involve food.
    • Student must not ingest gluten and must avoid touching food containing gluten.
    • Encouragement of proper hand washing to avoid incidental ingestion of gluten (e.g. from surrounding students’ snacks). Hand sanitizer is not sufficient for the purposes of potentially removing gluten.
    • Food items or items containing gluten (e.g. Play Dough) not to be used as a classroom learning tool – non-gluten substitutions can be made for classroom and parent can provide input/assistance.
    • In instances where food items are provided by the school, the same snacks are provided to all children whenever possible. If not possible, gluten free option(s) available. Collaboration with parent welcome. Parent is notified of all food that is provided to the student.
    • Gluten-free lunch options made available to child. Collaboration between parent and food services professionals will take place.
    • For all snacks otherwise provided by parents, parent will provide gluten free snacks for student.
    • Student permitted to go to the bathroom as necessary.
    • Student should be allowed to rest in nurse’s office as necessary.
    • Student included on allergy/medical conditions notification list given to school and transportation staff.

    1. I have a daughter that currently has a 504 plan for Celiac disease. Due to the many absences that she has accrued, the principal has marked her truant even when a note has been handed in. My daughter’s pediatrician has sent a detailed letter explaining that the nature of the condition is that she may have extended absences due to the pain and complications of the condition. Apparently this is not enough for the principal..Has anyone else run into this problem? We have had to go to a Truancy hearing already with the local courts.

      1. Betsy in Michigan

        Wrightslaw is the best resource online to help you determine your legal rights. Here’s one of their articles: http://www.wrightslaw.com/blog/when-schools-punish-sick-children-who-miss-school-a-game-plan/. What is the educator’s excuse? They’d rather have some kid puking, or having a migraine, or passing out in class? Does the truant officer go to haul kids out of the hospital? I just can’t even figure what universe they’re in, where a doctor’s explanation doesn’t suffice. You might want to look into virtual online schools anyway….! Good luck.

    2. Thank you for your sample plan.
      You might want to change it to: 48 hrs WRITTEN notice. My other child has a 504 for other issues and the teachers were frequently calling late in the day while i was driving home and couldnt write anything down, to discuss tomorrows event or the event in 2 days. For research and contacting manufacturers purposes, our timeline changed to “a minimum of 72 hrs written notice explaining the purpose of the food event. ” That way I could offer substitutions for the entire class that still met the same goal.

  21. I am replying as the mom of a celiac child who has a 504 plan and as a mom who has partnered with 2 other moms & the school district to bring safe gluten free lunch to our school district. First, as many pointed out the 504 is a great tool but is specific to each child and their individual needs. Adding a comment about one day needing safe food at school is a nice-to-have but not going to necessarily impact the school or any other child IMO. Especially if you’re not asking for gluten free lunch, the 504 will probably not be seen by the Food Services people.

    Regarding lunch at school, in my understanding, schools which receive funding through the USDA Child Nutrition Programs are required to make special dietary accommodations for children with Celiac Disease. The USDA considers celiac to be a disability and a 504 is not required to receive such accommodations. In the state of CT (and presumably other states), there is a special medical form that is required to be completed by you and your physician to initiate receiving meal accommodations. Those interested should contact their State Dept of Education and ask for the form. Once in receipt of that form, and if your school receives funding through the USDA school nutrition program, the school needs to work with you. At that point, it is best to really partner with your school food services and any other families in your district w/ similar needs to come up with a plan for food that you feel is prepared and delivered safely. Being a friend and partner as the school navigates new territory is really in the best interests of your child and others needing safe gluten free meals now or in the coming years.

    1. Hi Karen, I’m also in CT with a 12 yr old son with celiac and ADHD. The school board has told me last year (when he was entering 6th grade) that they had no options for gluten free hot meals or microwave use. He lost 20 lbs last year due to spacing out in the cafeteria and skipping his packed lunch (lack of appetite from ADHD medicine).
      He gained some weight back this summer but is worse on the ADHD issues. We think there is something else going on physically as well and are pursuing tests. He’s emaciated and has no muscles. I’m very concerned that he will be wiped out this year.
      I did not know he did not need a 504 and that he should be given gluten free options. The town board of Ed said that they offer nachos and salad. That won’t do for him.
      Any recommendations?

  22. As someone who develops and monitors 504 plans, a plan that is developed for one child will not effect a plan developed for another child. The accommodations are put in place for the student to access the school and curriculum. It can also be revisited at any time at either parent or school request, so no need to put in things that are not required at the moment.

  23. Nancy Stansbury

    I have a grandson and a niece who are both confirmed celiacs at age 10. One is just graduating from high school, and the other will be a senior next year. To not impact their school districts (grandson was only one of two in the entire school in elementary grades), both of them made the decision to bring their own lunches every day. My grandson even made his own dinner when they had a banquet after middle school graduation.

    Both my daughter and sister felt it was important for them to take responsibility for their disease as it is a lifetime commitment. They have both thrived, and never were accidently given gluten.

  24. Thanks so much to the entire Gluten Dude Community for your helpful responses. This has been so encouraging. My husband and I now feel armed and ready for our 504 meeting tomorrow! My daughter has already gotten one eye roll from a teacher about having to attend a 504 meeting about Celiac. I can’t wait for my opportunity to educate that hipster teacher that Celiac isn’t an imaginary disease. He’s not gonna know what hits him tomorrow. Dude best step off. Here comes Momma! And a big thanks to Gluten Dude for helping us get this done in warp speed!

  25. What you do to defend her right to be treated with utmost care so she remains well and can learn unencumbered will teach her that she has value.

  26. My son already has a 504 plan for ADHD, but we are adding the celiac component to it after he went to his science class a few weeks ago and they were doing an experiment with graham crackers. So as a middle schooler, he had to sit on the sidelines and observe — feel left out of the group. We were quite angry. If the teacher would have let us know the day before we would have sent in GF graham crackers so he could participate. Luckily my son is older so he is taking more responsibility for himself – if he’s not sure he doesn’t eat it until we can check it. But we are still adding to his 504.

    I agree with what others have said – these 504 plans are very individualized for each child so I don’t feel you need to include accommodations that you don’t need – it won’t affect future families.

    1. As the parent of a special needs child, I have to say that assuming one can make changes for accommodations on an “as needed” basis is short sighted. One teacher tried to suspend our child for something with the claim that we “should have realized this would come up and planned for it”. She knew it was part of the disability and choose to wait for it to happen.
      We did plan ahead – it was in the 504 and IEP. She simply decided that all parents are too foolish to plan ahead and put things in until they are actually needed.

      If we had not planned ahead, he would have been treated false.

      Special needs are challenging enough for children without having to wait and see. WORSE, with Celiac the child could end up very ill for several weeks thus missing a lot of education even if he managed to attend school. (I would have become ill from spending an entire period in a science class where gluten was being used even sitting on the “sidelines”.)

      “he had to sit on the sidelines and observe ” – he was denied educational opportunity that day. He was deprived from participating in the lesson. It is not just “sitting on the sidelines” and “feeling” left out. We never know what light bulb moment will come from a lesson. Sometimes everything comes together in a single moment of insight upon which advanced understanding is built. And your child missed out.

      Give teachers a chance to accommodate EVERY child.
      Most teachers would be upset by a child being forced to miss out on a lesson that they carefully planned.

      What happens to your child when a test question asks something that needed hands on time to really understand?

      If you sent in GF graham crackers, how are you certain that the previous class did not contaminate the lab tables, sinks, and door handles with those crackers? And a day before notice would not be sufficient for me to locate truly GF graham crackers – I mean not those LOW gluten processed things that one finds in stores. There are many ways to perform science experiments without needing to expose children to poison.

      Celaic was declared a disability by the ADA for just this reason. Everyone deserves the right to access an education in the U.S.A. Teachers need to plan for and accommodate EVERY CHILD in lesson plans.

  27. Amanda Robertson

    I had NO idea that a 504 plan for Celiac was even an option!

    My 7 year old was diagnosed in May of 2014, and her school has been extremely accommodating, but 504 was never mentioned. I thought it was strictly for academic situations. I wouldn’t even know how to go about getting her a 504 plan in place for something like this, but it’s definitely something I’m going to look in to.

  28. GD-

    Great post. Discussion here is awesome as a reference for those who come across this in the future and need to create an advocate for their kids. I say get the documentation in place with all options available but act on the ones you will really use. Don’t blame her for not eating the caf food, it was pretty dreadful in the day. Uh we won’t say what day that was right GD…

    Jersey Girl

    “I’ve got thick skin and an elastic heart”

  29. Someone may already have suggested this but I really like the idea of having topics but INSTEAD of writing out all the cafeteria needs I would say something like this: Cafeteria – at this point in time, student doesn’t eat cafeteria food. If that changes, we will need to change the 504 to address those needs.

    The good thing about that approach is – what if a future celiac kiddo actually needs something slightly DIFFERENT – you don’t know exactly what their needs might be.

    Go parents!

  30. This has been a great post and a really great series of responses from parents and teachers. Thank you for all the information.
    I know the 504 is a legal document that outlines accommodations that the child might need in school. But where do you begin when its a new school and you don’t know the curriculum to understand where the dangers may lie? What happens when you have a “Sideline observation of experiments containing gluten is not acceptable alternative” in the 504, but the teacher specially tells the child “it’s ok you can just observe the lab”?

    1. “Sideline observation of experiments containing gluten is not acceptable alternative” in the 504
      “the teacher specially tells the child “it’s ok you can just observe the lab” – This is a violation of federal law! It is actionable!
      The teacher is depriving the handicapped student access to the same educational opportunities by planning an activity that specifically excludes the child with a documented special need.
      Every child has the right to hands on learning that labs provide. It is discrimination to plan labs which include substances which are known dangers to the health of a child.

      I suggest that you be specific with what WILL HAPPEN and be more general with the requirement. SO write the above this way,
      “All classroom activities which include gluten including but not limited to parties, celebrations, experiments, labs, etc require 72 hours’ prior notice to (child’s) parents. All such activities must be modified to be gluten free for (named-child) and/or the entire class depending on level of contamination possible by introduction of gluten containing substance into the classroom environment. Where a lab table is shared, all experiments at the shared table must be modified to be gluten free.”

      You might want to consider putting in that the lab table behind your child must be gluten free. Depending on the form of gluten, there may need to be an accommodation that the entire room be made gluten free and ALL experiments be gluten free for the entire year. I get sick from a room where flour has become micronized in the air. I would expect that any classroom where flour is stirred into such a state be changed so that my presence in the room be safe.

      I would also expect an exemption from required attendance in any classroom where flour is a critical part of the program. If a Home Economics class is a requirement of graduation, then the classroom would have to be 100% gluten free all day, every day for the entire semester when I was required to attend class. I would expect to receive and exemption from such a class.

      You have to be more aggressive about protecting your child. If my child (who is legally handicapped) were ever told to “observe”, I would expect my child to remove themselves from the classroom, go straight to the office and ask to make a phone call to me. I would immediately drive to the school to address the situation with the teacher and principal! This is as serious as any infraction for which a child would be suspended. It must immediately be corrected to raise awareness to prevent future infractions.

      Politely and aggressively standing up for your child shows your child that they have value. It also teaches them how to stand up for themselves with this lifelong challenge.

  31. my boss required IRS W-4 several days ago and discovered a company with a lot of sample forms . If others need IRS W-4 too , here’s”https://goo.gl/lE3OR5″

  32. I don’t understand the comment above about the boss requiring an IRS W-4. I’m hoping I’m missing the connection that a 504 and a W-4 somehow combine to provide a tax credit or tax break specifically due to Celiac disease. Please explain.

    The current allowable tax break for Celiacs is too labor intensive and conditional to begin to use, in my opinion. Anyone want to rally for a flat tax credit for those diagnosed with Celiac disease to help with the cost of special food (of course include other diagnosed food avoidance managed diseases). 😁

  33. My son who is 8 and has Celiac has been denied a 594 Plan. They said it is not a life changing activity. How can I fight this? HELP!

    1. There is precedent for this and it is life-affecting in that if I child does not get gluten-free food, their body cannot function normally. I found that Celiac Disease is considered a disability and schools must be compliant for Americans With Disabilities Act. The key phrase for disability accommodations is the “loss of function”. Therefore I had the GI doc write a letter stating medical need for special meals and/or accommodation with that phrasing in it. The school district provided the form for him to fill out. We successfully implemented a 504 plan that is inclusive of the district providing safe food, food prep, table space, classrooms, etc. My twins started with this in kinder and are now in 2nd. This link really helped me form my ideas and plan for what we needed : https://celiac.org/wp/wp-content/uploads/2016/05/ACDA-Model-504-plan.pdf
      ALSO- here are key people I bugged to make it happen: The principal of the school, the head of nutrition services for the district, the school nurse, and the health programs coordinator for the district. This is recognized as a disability and therefor they MUST comply to demands that meet the needs of the child in the public school. Private schools do not need to comply.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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