Talking Allergies

My 5 year old daughter has celiac disease and will be entering Kindergarten in the fall. I am hoping to meet with her teacher in the next week or so to go over my concerns and issues that need to be addressed. I am asking for playdough, glue and paint to all be GF. (many common brands are, just a matter of getting the right ones) for hands to be washed before and after snack, tables to be washed before and after snack. No in class baking/cooking unless it is GF. No food brought in for celebrations. I feel like I need to be prepared to fight for my daughter. She has as much right to be safe in a classroom as kids with other protected allergies (peanuts are banned) while still being fully included. Can anyone provide me with some laws or regulations that could support us? I feel her needs are no different than a child with anaphylaxis, special needs etc. Those are all taken into account, so should her celiac disease. Thanks so much.

Is she affected by trace amounts of gluten? Asking because I have seen a wide range of 'tolerance'.

My daughter is ana to tree nuts but has many other food allergies too. We never worried about the other ones at school parties etc because she had to ingest as compared to the tree nuts which only took a trace amount for an anaphylactic reaction. Her old school treats the allergies on a classroom basis and when anaphylactic, students are asked not to bring items into the classroom containing those allergens.

One year, the list of anaphylactic allergies in her class included tree nut, peanut, egg, milk as well as 30+ other foods! All the more reason not to serve food. I would love for schools to stop serving food to kids but that's a battle I'm not expending energy on at this point!

As my child has gotten older, she does not want any fuss made and as long as there is one safe food she is good with that. It bothers me but not her and she doesn't want to inconvenience others and not let them have the yummy treats she cannot eat. I know it is very different than Kindergarten of course.

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

I agree that when children are in the earlier grades and still tend to put fingers and items in their mouths, there needs to be a plan for the avoidance of gluten ingestion.

I think the requests that you have made are reasonable. Regardless of what the school puts into place, you need to start teaching your daughter strategies for keeping herself safe. At that age, I took our daughter to playdates and library activities that included snacks with other moms and kids afterwards. Everyone learned to wait until I wiped down the table, wipe their hands and wait until we portioned out the safe snacks. At first, I brought the snacks to share but soon, the other children wanted to bring safe snack to share! Kids are awsome at wanting to keep their friends safe.

You will be amazed at how many times food is used as a reward, tool in lesson plans or to celebrate everything under the sun. I am all for more parents requesting less food in the classroom!

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

This is so true! A big to all of the kids out there helping to keep our kids safe.

The toughest part about Kindergarten is that for many parents they may not have a clue about cross-contamination, gluten, anaphylaxis etc. Even though we were newly dealing with food allergies in grade 1, I didn't understand another student's gluten intolerance and thankfully the mom educated us. It can be a fine line between overly dramatic (which I did in early-allergy life before I was educated ) and safety. We had to learn that not everyone wanted to learn and that we had to do what was reasonable for our child. Honestly, 98% of parents and classmates have gotten it.

It is not too early at Kindergarten to teach friends what your daughter's signs are that she accidentally had gluten. The teachers have so much going on that it is not feasible, in my opinion, for them to watch for reactions especially if delayed - and especially if there are multiple students with health issues. If it is that serious for a student then ideally they would have an Educational Assistant assigned although that may be difficult to get.

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

With CD it is not about how much a person is percieved to tolerate, but they cannot tolerate any gluten. My MIL has CD and the only symptom is severe osteoporosis after a lifetime of eating gluten. Even a little can cause injury to the intestines.



While I don't have to deal with this, I am interested in the answers. My DH has CD so my boys are at higher risk and, while testing negative, have shown mild signs. My oldest is going in kindergarten in September.

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Hiebs
Me - Allergic to Dogs, Cats, Dairy, Nickle.
DH - Celiac Disease
DS1 - Allergic to Horses, Cats, Dogs - Asthma, Eczema
DS2 - Allergic to Cats - Eczema, Asthma

Exactly my fear!

I feel the same way. Ds's allergies go above what is protected (pn/tn's) which freaks me out. Also it is hard for people to believe as with you that oddball allergies are equally sever as a peanut allergy. I know this is an issue also for all you dealing with milk allergies, it is in the classroom every day in almost every lunch.

I am having a nervous breakdown the past month as Jr.K creeps closer. I have no idea what to do. Due to the fact that almost all foods eaten (bread, crackers, yogurt, sour cream, margarine, even some freaking cereal (kellogs frosted mini wheats) now have gelatin in them, marshmallows, gummy treats, jello, hummus even if made without tahini, and on and on and on ) will still have at least 1 of ds's allergens in it trace and cross contamination is a HUGE issue for me. DS is not aware enough of his allergies to care for himself at all yet.

I am just sick about this and the school has decided to wait until Sept. to have the meeting they said we'd have. Sure things will be fresh in their minds but I have no idea how they plan to accomodate his level of severity of allergies as well as his multiple allergies. There are many ana. kids at this school, the teachers have yearly training etc. BUT from the sounds of it many have some tolerance level to their allergens as well as most seem to be just to pn/tn which the school is pn/tn free (aware). . DS has had ana reactions to trace amounts of all his allergens, add in he has so many and his situation is very different. I know I can't ask the classroom to be free from all his allergens so that means DS being in a classroom with sticky fingers containing his allergens.
STRESSSSSSSSS!!!!

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DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

Divvamomma - do you know how your child's school has handled other student's with celiacs or food allergies other than peanut? As for laws, it depends upon where you live. And it seems it depends on the division/district and/or school and how they interpret the laws.

Do you have product names for the school of gluten-free supplies? Does the school supply everything or do students? In my experience with 5+ Kindergarten teachers, lots of glue is used (parent supplied), some paint (school supplied since usually use liquid tempera) and no play-dough. At my kids' school, it depended on the teacher --- some asked for $ and bought everything (usually younger teachers) whereas others gave a supply list and it was up to each student. If the teacher buys it then there is control whereas if each student buys it there is none.

A teacher can ask for a specific brand but no guarantees that is what students will bring - especially if it is more expensive and/or hard-to-find. e.g., one teacher asked for a specific brand of water-colour paint for grade 1 and I searched and finally found it at the 4th store and got it. Then it was not even touched that year! For my next child, when they asked for a specific brand I honestly didn't bother. If we had been told it was for medical reasons, absolutely we would have complied but unfortunately not all will do that.

BC - I wonder at what point medical conditions qualify for an Educational Assistant. Do you know any teachers or administrators personally at his school or in the division/district whom you could ask? Many school administrators are at the schools at least 2 weeks ahead of the first day of school - are yours the same? Does each child have his own snack in J-K? When my daughter entered K, the family of a student with Peanut allergies gave us a list of suggestions which really helped - looking at your son's allergens on your signature, I don't see fruits or vegetables --- perhaps they could be the only healthy J-K and have just those for snacks! (hopefully my daughter's allergy twin isn't in his class...)

Educational Assistants are provided for many different reasons and I envision that there will be more in the future given the increase in food allergies and celiacs. Your son using his sister's toothbrush is a good example for the school of the severity of his allergies. I know you have mentioned more as well. Real-life situations will go farther, in my opinion, with the schools than just words.

Hiebs - regarding traces of gluten, I have only spoken with 3 people - a child, a teen and an adult - about Celiacs so I know very little. The child was in grade 1 and she always brought her own food to classroom celebrations, and would never eat at our house but she often came to our house that had lots of gluten and they did not seem worried about classmates having gluten products. In contrast, with kids with anaphylactic allergies, they would also bring their own food to events but would not let their 6 year old hang out at a house with their allergens without them and definitely concerned about classmates eating their allergens.

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me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

[quote="walooet"]Divvamomma - do you know how your child's school has handled other student's with celiacs or food allergies other than peanut? As for laws, it depends upon where you live. And it seems it depends on the division/district and/or school and how they interpret the laws.

Do you have product names for the school of gluten-free supplies? Does the school supply everything or do students? In my experience with 5+ Kindergarten teachers, lots of glue is used (parent supplied), some paint (school supplied since usually use liquid tempera) and no play-dough. At my kids' school, it depended on the teacher --- some asked for $ and bought everything (usually younger teachers) whereas others gave a supply list and it was up to each student. If the teacher buys it then there is control whereas if each student buys it there is none.

A teacher can ask for a specific brand but no guarantees that is what students will bring - especially if it is more expensive and/or hard-to-find. e.g., one teacher asked for a specific brand of water-colour paint for grade 1 and I searched and finally found it at the 4th store and got it. Then it was not even touched that year! For my next child, when they asked for a specific brand I honestly didn't bother. If we had been told it was for medical reasons, absolutely we would have complied but unfortunately not all will do that.[quote="walooet"]

At my daughter's school there are no other kids with celiac and I don't think there has been. Peanuts are banned of course and I have no idea what they do regarding other allergies. Worth a discussion for sure.

The parents are requested to purchase certain items (glue sticks) and the school provides most of the other items (crayons, markers, pencils, paint etc). I have the names of gluten free brands (UHU and Elmer's are safe) and I have already checked the paint the school buys/uses. It is safe. So I think all I am asking is for either the parents to be asked to buy the safe glue or for the school to buy it and add it to the fees. I also want gluten free playdouhg and new toys or none at all. I also want my daughter to have her own markers, pencils, scissors etc. I am very worried about cross contamination. One crumb ingested would be enough to cause her to have a number of symptoms, mostly delayed. The biggest concern of course is the intestinal damage that begins to occur and brings on all sorts of nasty issues. I want tables and hands washed before and after snack in the hopes of limiting the cross contamination. I am not asking for the child's individual snack to be GF. I am hoping to eliminate the food at celebrations and the in class baking.

Thanks for your words of advice and support. It always helps talking to other parents who have experienced this and "get it".

"She has as much right to be safe in a classroom as kids with other protected allergies (peanuts are banned)"

Im going out on a limb (as a daughter who's mother died of complications due to unmanaged coeliac disease).....but I really believe your requests are over the top for a non lifethreatening condition. (peanuts presumably being banned as its well documented that as little as 1/2000th of a peanut is able to cause lifethreatening anaphylaxis).

I guess i also come from a place where NO food bans are in place even though at least 2 of the things my son reacts to with anaphylaxis are part of nearly every food that other students bring in (sunflower and barley).

We have managed really well with strict hand washing, strict supervision, no food sharing (including 'celebrations'-the only food consumed is what is provided by the parents)

The only exception to this in kinder was the banning of 'peanut butter' due to its stickiness and ease of transportability from one child to another (and given that small traces are needed to produce anaphylaxis.)

good luck! (please dont take offence to what I have written-Im only trying to provide another view point)

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twin boys-
c-eosinophilic oesophagitis
j-avoids peanut, sunflower, pineapple all ana-sensitised to maccadaemia.pecan.Passed barley (previous ana) last year...out grew egg ana and peanut at 3 years..became re sensitised with ana at 6 years to peanut.

It's always to get another perspective! If you get this thought from some within our community, you can expect to get this from some outside of our community.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

I am sorry your mother died of untreated CD. But that is exaclty my point! CD IS dangerous to a person's health. I will not risk anything to protect my daughter. If it means Johnny can not bring cupcakes to school then darn rights I will fight for that! Johnny can have cupcakes at his party at home.

What exactly do you think is "over the top"?? Seems pretty simple to me.

I think that due to the many food allergies AND celiac disease that NO food should be brought into the classroom unless it is that indivdual's snack or lunch. Egg allergies, milk allergies can be just as severe as peanut allergies. Celiac disease has many MANY symptoms that can occur and LONG TERM DAMAGE that can lead to other things like cancer. I know I am probably living in a dream land but it doesn't hurt to try. As I said, my daughter has just as much right to attend school and stay safe and healthy as anyone else.

I think that many people don't understand the pain associated with celiac disease, nor do they understand that there are long term issues such as malnutrition due to the inability to absorb nutrients from their food.

Know what you are up against and know that you will have to provide some of this info to back up your requests.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

i've just skimmed over the replies so far, so forgive me if this is repetitive.

Are there any recommendations / guidelines put together for kids with CD from gastroenterologists like there for those with allergies (Anaphylaxis in Schools and other Settings - put together by allergists and stakeholders)? I agree that the requests you have made will likely be seen as over the top, and I would worry about how your child might be targeted by other families who will be upset - much like the situation recently in Florida. The guidelines for allergies emphasize that it is a shared responsibilty, not a situation where the school has the ultimate responsibility to protect the child.

Experience from many of us has shown that requests for no food to be brought in for celebrations is COMPLETELY IGNORED!!! Especially in the era of fashionable cupcakes (grrrrrr).

My son is ana to dairy and nuts (dairy is to trace amounts), and he is now in Grade 5. I have never requested that food not be brought in, although the teacher has (and it is ignored). I have considered what is written in those guidelines I mentioned above, and food bans are not part of the scenario, even for anaphylaxis. The cleaning of desks, hand-washing are definitely part of it, as are considerations like a safe place for the allergic child to eat (in early grades he ate at a desk, on a separate tray, with his desk pulled away from others, or at a separate table). When other parents have brought in cupcakes etc, I always had a "safe stash" left with the teacher so she could give my ds a safe option from home, or she alerted me ahead of time so I could send in his own cupcake. Food celebrations like Hallowe'en, Valentine's Day, movie popcorn days etc ... I always volunteered in class those days so I could ensure he steered clear of unsafe items. He has managed on his own since Grade 3.

As a result of this co-operative effort, my ds has never been bullied because of his allergies, his classmates are really protective, and parents - while they doubted his allergies at first - have come to learn and understand that serious allergies doesn't always mean that the child can't even be in the same room as a peanut (which is still a commonly held belief ... but is not true. And if only the parents of the girl in Florida had known this...) And importantly, no parents are upset with us over imposing a ban on all celebrations, which is a very touchy issue. I also realized early on that label-reading is a learned skill, one that took us several years to master, so we cannot reasonably expect 200 sets of parents to catch on in a matter of days.

I'm not sure the need for GF playdoh / glue is necessary considering that it should not be anywhere near the food, and is not likely to be ingested. If you prefer it, you might offer to purchase it for the classroom as a gesture. I know we have a latex-allergic child, and while the school asked me about latex-free first aid kit options, the Mom actually donated those to the school in case he ever needed something.

My ds has a classmate with CD, and her Mom hasn't made any specific requests at all. Like my ds, she brings all her own food to school, and is only allowed to eat what is sent from home, and it's that simple. We have always been the Moms to volunteer on pancake day! She is in Grade 6 now.

I was very nervous when my ds was entering kindergarten, and I quit my full-time job right beforehand so I could be available at all times. I knew that banning milk was not an option, and Allergic Living and Anaphylaxis Canada have taught me that it's important for children to learn, from a very young age, to be responsible about their own allergies. With dairy, it's an absolute necessity given how ubiquitous it is in schools. He is always going to be in a world where milk is everywhere, so he has to learn to live in it, and not feel like he is in absolute danger at every turn. (AL had an amazing article several years back about the anxiety issues that allergic children face when they hit the late tweens / early teens, which can translate into severe nutritional issues ... and the article did mention how parents might be contributing to it. It really impacted how I have been approaching it with my ds.)

That being said.... tomorrow night is our last school council meeting of the year, and it appears there is a drive on for a MILK PROGRAM???!!! Why? Why? Why? Drippy milk cartons on lunch tables just might be my first real battle... Ds has never had a reaction at school. His 5 ana reactions have always come as a result of eating out, or mistakes made at home.

Good luck!

My mum died from a rare small bowel carcinoma due to years of not following a gluten free diet and not having ANY medical follow up after 18 years of misdiagnosis of what was classically coeliac disease. She didnt die from contact with trace amounts of gluten in her every day living life.

I love what mumtobunches has written-she's written MUCH better than what I was trying to say.

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twin boys-
c-eosinophilic oesophagitis
j-avoids peanut, sunflower, pineapple all ana-sensitised to maccadaemia.pecan.Passed barley (previous ana) last year...out grew egg ana and peanut at 3 years..became re sensitised with ana at 6 years to peanut.

I understand what you are saying. We have taught our daughter to only eat what we send her in her snack bag. When the girl next to her wants to grab her spoon and trade, that's a tough one. GF playdough would reduce cross contamination. When a child plays with playdough, then goes to the blocks there is now a posibility of gluten on the blocks. My daughter plays with blocks then picks her nose. Chances of cross contamination and her getting sick are increased. Yes she is being taught to keep her hands out of her mouth etc but she is barely 5! As I said, nobody would bring in peanut butter playdough. I am not out to ruin celebrations but there are ways to celebrate without food! Every birthday does not require in class cupcakes. The mess, the time wasted, the nutritional void in junk food. Again, not necessary. Efforts are made to include children with special needs in regular classroom settings. Why should my daughter be required to go eat at a table all alone?? Ridiculous. If a few simple changes could be made to eliminate soy/egg/milk etc whatever your child is allergis to wouldn't you try to make those changes? I am not asking for all food to be GF. That is impossible. I know that. I am asking for reasonable measures to be taken to protect her health. If things can be done they should be done. Period. I now realize what I am up against. Thanks for the heads up I guess?