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New Here And Need Help With School Policy

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I really have tried to refrain but this is beyond frustrating.


1) Are you in the US? That could change things vastly. 


2)  It sounds like there is a PACKAGED facility warning the school is talking about. I haven't heard of ANY school ever saying anything about home made stuff. This policy is not helping anyone really as when they are that ridiculous no one pays attention. I would get a 504 plan going and address it there. 


3) The school has to offer accommodations that offer the LEAST RESTRICTIVE environment for ALL students.


4) Would it be okay with you who have kids with Celiac to make them go eat by themselves in an area away from everyone? I doubt you would think that was very fair or kind.  Please think before making suggestions that are damaging to these kids-they have enough to deal with.


5) Celiac is not a life threatening food allergy.  YES they all need to stay away from the offending food. Yes it is a life long dietary change.  Your kid touching something that had gluten on it and rubbing his/her eyes is not going to put them in the hospital, in the ICU or potentially kill them.  They have the same management and should be taken EQUALLY seriously and they are BOTH covered by Section 504 of the ADA here in the US and having Celiac does qualify for a 504.


But it won't kill your child with one exposure.  That is the reality of food allergies.  We manage both and we manage them the same and they are both addressed in our 504 BUT I have to look at the accommodations differently.  I wouldn't ask for a gluten free classroom because the repercussions are vastly different.


Should one be taken as more serious- NO.  


Does one have very different consequences- YES.  


Should they ALL be protected- ABSOLUTELY!

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I'm in the U.S. 

The form that was sent to me states that no food from a facility that uses peanuts, tree nuts, or sesame are allowed in snacks or lunches. This is in addition to the no PN/TN/sesame and no "may contain" statements.


I thought I was reading more into it than what they intended, that's why I asked for a meeting. Nope, that's what they meant.

The flours that I purchase, Bob's Red Mill- from their dedicated gluten-free facility, all have the "facility" statement and cannot be used, so the crackers, breads, tortillas and anything else I make that uses flour are out. I'm really trying very hard to be straightforward about this and don't want to ignore it or "sneak" around it- although they did not mention home kitchens and I did not inquire as to whether they also meant homes. I'm currently operating as if we need to have zero cross-contact from home.


We don't know if he has celiac. His gene test was negative, but from what I've read/been told the antibody blood test and biopsy are the gold standard. Perhaps more genes are involved than the ones currently known? He is unable to tolerate enough gluten to do a challenge. Cross-contact causes serious intestinal bleeding, I don't even want to think about what would happen if he ate a slice of bread or (God forbid) the 4 daily slices for 1-3 months. He would bleed out. His allergist said that as interesting as it would be to have an "official" diagnosis, there was no way that she would do the test and is calling it a severe non-IgE mediated allergy.

Will touching gluten (or rice) put him in the hospital? No, but ingestion will. 


I'm looking into what a 504 is. I've never dealt with it as our requests for accommodations were met at his previous school without question. Hoping the 504 applies to private schools...

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StephanieL, my kids were forced to eat secluded for "accommodation" of their gluten allergy in US schools. I don't recommend it, but it was the only way they could "tolerate" school and not end up hospitalised AGAIN for their gluten/wheat allergy.

HappyPlace, I hope you can successfully negotiate for your son's health. We ended up consulting with Allergic Girl (Sloane Miller) to help navigate the schools and doctors. She has written a book as well if you want to get a feel for her approach. Getting accommodation for our children in the US was hard and fraught with many doctors, doctor bills, hospitals and emergency surgery. We let our oldest suffer for far too long trying to accommodate the needs of others, and I don't recommend that approach if you can avoid it. Hopefully, your doctor can intervene in an effective manner. In the end we moved to Australia where the ease of accommodating our children makes me wonder why it had to be so hard in the US.

My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

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Happy Place- Have you ever heard of FPIES?  I Am wondering if that is the issue at cause here. It is basically what you are says, a non-IgE mediated condition. Not having the genes for Celiac is pretty much a no, it isn't Celiac. There are *some* cases without the gene but they are kind of like unicorns ;)


As for the facility warning stuff-  This is a BS policy and isn't helping anyone. I am not sure if you are up for the fight or can find other ways of keeping your kiddo safe but the policy is off.  I am wondering if the school gets that just because it doesn't say shared facility doesn't mean it isn't.  As I have said, those are all voluntary and no one HAS to disclose shared lines/facility.  Maybe if this could be explained to the school they would consider changing this terrible policy!  So much of this depends on how much of a fight you are willing to make and I don't envy your position :( I am very sorry you are having to deal with this.  Who have you spoken to at the school? I would think of getting a letter from the allergist expelling the facility warning to the school and how a buffer zone between your child and any nut allergic child would be the most sensible resolution to this.  Again, the policy is terrible!


Now for the bad news- I am sorry to say that unless your private school receives public funds (through a school lunch program or somewhere) they are not bound by 504. If they get ANY public funding though they MUST make accommodations through a 504.


weluvgators- I am sorry that happened with your kids and that makes me sad.  We have a plan in place where my DS eats at a desk at the end of his table with some space and only "buyers" sit next to him.  All hot lunches provided by the school are nut free but not free of his other allergens so we also have a buffer zone as well. I know that doesn't work for all families :(

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Does school provide all lunches for all students?  I seriously cannot fathom their assumption that all homemade lunches fall within this policy.  It is physically not possible for this to work if parents are sending in outside food for kids.


That being said, I'd fight it, but I'd also fall under the "ask for forgiveness and not permission" route and just feed my kid the best I could while following the *intent* of the rule (I wouldn't sent in nuts or nut butter).


Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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@StephanieL: I had not heard of FPIES. I've looked at it briefly and it doesn't "feel" like a fit because he has never had any vomiting with it, but I will ask about it at his next appointment. I'm sad to here about the 504- I don't think the school receives any public funding. :-(

But, I had to laugh at the unicorn reference, my allergist said that when she was in medical school, one of the things they taught was that when you are in North America, you should be looking for horses not zebras. She told me that after being flummoxed by my head to toe hives (I used to scratch myself until I was scabby) and no nasal symptoms- she was absolutely positive that I had a food allergy. After doing an elimination diet to no avail and being on mega doses of 2 different anti-histamines, I finally talked her into testing for environmentals - trees, weeds, grass, molds, etc. I tested positive for 110 of the 120 things she tested for. From then on, she called me her zebra. 


@BlessedMommy:switching schools is not an option this year for many reasons. We are planning to move after this school year though so it might be better next year (fingers crossed). I can't imagine it getting worse but, I hope that's not being naive.


@africanqueen99: The school doesn't provide any lunches and the parents take turns bringing in the daily snack. I've seen snacks go in that ARE "made in facilities" but don't have the statement on the package - thats just from the experience of working with the TN mom last year. I don't know if this years allergy child eats it or not. But, I don't want to bend the rules. I think that a plan that includes all of the details would be safer for all concerned.

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