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gfgypsyqueen

School Tips And Tricks From The Pros

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With the school year about to begin many of us with newly diagnosed kids in preschools, daycares, and elementary school are looking for some advice. I assume it gets easier with older kids? Maybe? I was hoping that some of the other members who have already delt with the schools can pass along some of their lessons learned. I am hopeful that together we can minimze the learning curves for everyone :)

How do you notify the school? Writing, verbal, letter from doctor, etc?

Do you have a 504 for your child? (A lot of chat about this recently.)

What do you do about crafts?

Do you supply safe snack boxes?

Do you supply all food and drink for your child or just some?

How do you go about educating the teachers and staff? What has worked best?

How do you notify substitutes and other teachers/staff that have contact with your child?

Any other tips and tricks that you have found to be helpful?

-AnnMarie

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My son goes to a relatively small parochial school (max 60 kids per grade, two classes each K-8). He was diagnosed half-way through 5th grade. So by then all of the staff and most of the teachers knew him.

I started out with an e-mail to his teacher, and copied the principal, asst. principal, coach, and school nurse. I explained that this was a new diagnosis and he was still very upset about it and not willing to talk about it too much, but to let him go at his own pace. I gave a little background on Celiac and some website links. I gave some info on OK and not OK foods, advised that he would bring his lunch daily, and that he could not do things like handle play-dough (a little old for that already), papier mache, or licking envelopes. I told the teacher she could forward the info to any faculty/staff that she thought needed to know.

The teacher called me that evening at home and we talked for nearly an hour about specifics. I sent treats for my son to keep at school. One of that teacher's quarterly motivations was allowing kids to earn ice cream sundaes. We talked about what kind of ice cream and toppings he could have to make sure he was included.

After about 2 weeks, my son was ready to talk about it to his class and did so. At that point, I told the teacher she could tell any parents who asked about it (like with regard to sending birthday treats), and to feel free to give them my home number if they wanted to call me about it. A few of them did so.

I saved the e-mail, and edited it for the new teacher the next year, and that's how I start each year as soon as his teacher is assigned. (So far each year the teacher has called me to get more info.)

Do you have a 504 for your child? no - have not felt the need for it

What do you do about crafts? my son knows what is OK - since he is older, not really an issue

Do you supply safe snack boxes? yes

Do you supply all food and drink for your child or just some? all food - drinks have not been an issue

How do you go about educating the teachers and staff? What has worked best? see above

How do you notify substitutes and other teachers/staff that have contact with your child? subs not an issue due to age - he can speak for himself

Any other tips and tricks that you have found to be helpful?

1) Keep him stocked with treats.

2) Contact homeroom moms and sign up to send treats for parties (whole class)to make sure he is not left out.

3) Try to stay on top of pizza parties. On the days the school has pizza for lunch (monthly) I bring him one at lunch time. I always keep some small crusts in the freezer. Occasionally I get a late notice about a special pizza party and so far have always been able to come through.

4) Send reminder lists to teacher about OK candy in advance of Halloween, Valentines Day, and Easter.

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I don't consider myself a pro - fairly new to this, too. (I'll be watching for good tips, too)

My daughter was diagnosed with about two months left in school last year. I notified the school nurse, her teacher, and the teacher's aid. Substitutes were not an in issue since the teacher or her aid were always there. The teacher's aid was also the lunch room monitor for my daughter's class so I didn't have to notify someone else, but I would have if it hadn't been someone already in the know. We did specifically talk about no swapping of food.

I sent a bag of goodies that the teacher kept in her cabinet for "surprise" events. Our school has a "No Birthday Treat" policy because of all the allergies and also to eliminate people trying to outdo each other and having some outrageous things show up at school. (The do recognize the kids' birthdays, but food is not involved.)

I sent all lunches and drinks (she was not drinking much milk for a while). This year she will be able to buy milk if she wants to.

The teacher would give me advance notice of special events so I could check out what food was going to be offered ahead of time. Sometimes she got what everyone else got. Sometimes I brought or sent something in for her. If the teacher didn't know and was unable to get ahold of me, then my daughter got something out of the goody bag. Craft stuff wasn't an issue. The did do some cooking projects. I became the parent volunteer on those days so that I could keep an eye on her. I would let her help make the items (one time it was pancakes - another time is was cutting out cookies) and then have her wash up as soon as she was done. I was also the one to clean up all the mess in the area after all the kids were done.

As she goes into first grade, I will be notifying her teacher and the class parent (so that I can be told what is going to happen at any of the parties and if I feel the need - then be one of the volunteers to work at the party).

My daughter (age 6) has accepted this pretty readily and knows quite a few of the items that she can and can't have. If she doesn't know, she knows to wait until I have checked it. You'll be surprised at how quick they will take control of their own diet. Every year, the school does a walk-a-thon benefitting a local children's hospital. Her teacher was not there. The aid was distracted. Someone passed out Oreos afterwards as a treat to all the kids and she told them she couldn't have it because it had gluten in it. I can't tell you how proud I was!! (Of course, she DID tell me later that it wasn't fair - and of course, I let her have cookies for a snack after school :P )

We don't have a 504. Quite frankly, I didn't even know about it - so I've been following that thread to learn a few things. I don't have plans to go a get one right away but I will keep it in mind should I feel the need arise.

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My daughter isn't celiac but has allergies to wheat, gluten and other foods. I don't know if a 504 would apply to her or not.

What I do at the beginning of the year is type something up stating her allergies and spell out that not only can she not eat these things, but can not come in contact with them. She doesn't have life threatening allergies, but contact with them can cause a rash. And then of course there's the accidental part where the kid gets something on their hands then sticks their hands in their mouth without washing. I don't think she would do this but I've sure seen a lot of other kids do it.

I have to send in all of her food. At the beginning of the year, I send in some treats that are safe for her for birthdays and such that I didn't know about ahead of time. For parties I know about, I make special food for her. If there is a project involving the allergens, I try to come up with suitable things for her and any other kids that also have allergies and food issues.

I think with some kids it might get easier when they get older. They will realize that eating this stuff will make them sick and they won't want to get sick. They will also be better able to read labels and recognize where the danger lurks. But with some kids it might get harder. They like to push limits and see if just this one time they won't get sick. My daughter just turned 9 and is begging me to let her try things she is allergic to. She has a friend with all of the same allergies but the two kids are affected differently. The other girl does not get as sick as she does. And she just got taken out of special ed. Her allergies affected her so badly she fell behind in school. I don't want to go through that again.

One thing I am happy about at her school is that they do not allow sharing of food. That way I know she won't be getting anything at school that she shouldn't have. However... Some of the teachers will pass out treats for all the kids and then tell them they can have them if they are able to. This is upsetting to me because it is up to the kid to determine what is safe for them, and then if it is not safe, to dispose of it. Even though I try to be there for all the parties, not all of the parents know of her allergies or can seem to remember them even though I've told them. So her desk will get covered with pretzels, cookies, cupcakes, etc. while they are passing out the treats. This is very upsetting to her because she wants to eat them and can't.

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Hi there, I realize that I don't have a child, but I figured I would put my two cents in since I went through all 12 years of school + preschool with celiacs.

Elementary School:

-You should definitly be in contact with the teacher, cafeteria staff, and nurse at the school. Make sure they are all well informed and know who the child is. If at all possible introduce your kid to the lunch staff and nurse, it will make them a lot more comfortable if they know they can count on them and tell them if they are having any stomach problems that they might not want to tell their classmates about..

-While talking to the teacher make sure they know that flour in the air can affect the child. Pretty much the only times I ever got glutened in elem. school where from cooking and art projects.

-Make sure the kid has plenty of safe candy/cookies, it seems like when I was in elementary school every other week was a birthday party or suprise snack from the teacher. I didn't always have something and sometimes felt left out. Eventually my mom and teachers got better at making sure I had a special box with treats for me.

-When you have class parties and everyone is supposed to bring something, sign up to bring something other than plates or soda, chances are 89% of the kids are going to bring some form of wheat, If you bring a bag of candy or gluten free brownies, your child can at least know they can pig out on that.

*****Go over with your child what they can and can not eat. I memorized from day one, "I have celiac disease, I can not eat wheat, oats, barely, or rye," and knew how to spot them on a food label. Teach them that if they ever have a question (especially when they aren't old enough to read) to go to one of those people that can help them, or to ask the teacher to call you.

Middle School

-Once your child goes to middle school, they are NOT going to want you to come in with them and talk to all their teachers and the lunch ladies and anyone else. If at all possible I would try and get emails for the teachers and email them only. Then they are going to know that if Susie says she needs to go to the bathroom, she NEEDS to go to the bathroom. Every once in a while you will get a teacher that only allows a certain number of bathroom passes per child, if that is the case you want to make sure you have told the teacher the circumstance without completely humiliating the child. (I'm not embarrassed by that anymore, but in middle school it could have killed me.)

*****By this time I pretty much knew all that I could and couldn't eat. I could read labels and spot trouble by just looking at some foods. This was the age when I started going out with friends, groups of us would get dropped off at restaruants and then go to the movies. Just make sure they know how to deal with restaruants and people.

High School

-OK, while I was pretty much on my own in high school as far as informing people about celiac, I won't lie and say this was the easiest time in school I had. By far, high school was one of the worst times eating-wise for me personally. Up until just about half a year ago I really struggled with several things.

-Not very many people bring lunches to school, this made it sort of annoying to bring one, and brought up a lot of questions from everyone. It seems like every lunch hour was about my disease and what I could and couldn't eat.

-High school is also the time for fast food. Friends are getting cars and fast food runs are all the rage. Make sure your teen knows safe foods at all the fast food places.

-I felt my disease was a burdon to my friends and family. If everyone wanted to go to subway, I would agree, and just not eat anything. Even though I could have ordered a salad, I felt left out and often times would sacrifice eating. Make sure your kid doesn't do that. I was constantly hungry.

-In high school I sort of made a joke of my disease, and at first it was OK, but slowly some of my friends felt it neccisary to ask me if I wanted a bite of the cookie or pizza, every day at lunch. That was not fun, at all. Because I was diagnosed so young my friends had never seen a difference in me with gluten and without. Eventually I had to explain to my friends that it really was a serious thing and I even showed them a picture of me back when I was sick. They were all really supportive after that, they even got the green bracelets to wear and one makes me cookies sometimes.

*****I'm honestly not sure how to avoid some of those problems. I think that some of those self-consious/awkardness things will come with the age and go with age. Just makes sure they know like the back of their hand what they can and can not eat. Help them to realize that they do have options, they just need to know how to look for them and ASK QUESTIONS. If I would have know that for all four years of high school, I probably would of had a more successful food time.

In general, always make sure they have some sort of snack with them. I try and make sure there is fruit or trail mix I can eat if I start feeling bad.

Hope that is slightly informative,

Taylor

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One thing I am happy about at her school is that they do not allow sharing of food. That way I know she won't be getting anything at school that she shouldn't have. However... Some of the teachers will pass out treats for all the kids and then tell them they can have them if they are able to. This is upsetting to me because it is up to the kid to determine what is safe for them, and then if it is not safe, to dispose of it. Even though I try to be there for all the parties, not all of the parents know of her allergies or can seem to remember them even though I've told them. So her desk will get covered with pretzels, cookies, cupcakes, etc. while they are passing out the treats. This is very upsetting to her because she wants to eat them and can't.

I don't know how well you know the kids in your daughter's grade level, but I have a suggestion:

Ask the teacher to pair your daughter up with another girl who will help her to deal with the issues surrounding parties and other events. In every classroom there are always a couple of kids, usually girls, who are like little moms. They take it upon themselves to watch out for the other kids, especially those with any special needs. I've seen it with students who had food allergies, Asperger's Syndrome, a hearing impairment, selective mutism, etc. Kids like this LOVE to help out, so once you or the teacher explains the situation, this child will take her job very seriously.

At party time, have the teacher show the two girls which foods are off limits. Then when the treats are being passed out, either both girls or just the helper can assist by making sure that no forbidden foods are put on your daughter's desk. It's so hard for kids to assert themselves when they have to do it alone and with grown-ups, but when another kid enters the mix, it is so much easier.

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Hi again, no problem, anytime.

I also wanted to point out that your kids are really lucky compared to when myself and others were going through elementary school and even some of middle school. Back then if I wanted to eat a sandwhich it was on a plain flavored rice cake, and if I wanted a snack it was the bite size plain rice cakes, and if I wanted dessert it was a chocolate flavored rice cakes. Those were the only three kinds they had too, thank you very much.

Haha, but in all reality, there were very few gluten free products on the market, and being the only celiac in my family, it was difficult to buy a lot of specialty products for me that we had to order through the Gluten Free Pantry magazine, it was easier to just make do without the special foods, it wassn't like I was missing them, I didn't know what they tasted like. So having a cookie or a slice of bread was a rare occurance for me. For my 10th birthday I asked for a bread machine so we could more easlily make the bread, it was the greatest present ever!!!

Luckily now you can just run to publix and pick up anything you might need to satisfy your kids needs. Hopefully he or she won't feel as left out as I did in some instances because their food will be more "normal", and won't be a rice cake.

Oh and just so you know, I can hardly look at rice cakes any more.

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from a preschool parent:

This last year was a nightmare. We are in a federally funded preschool who must provide meals, they were serving innappropriate stuff like baby rice cereal to my nearly 4 yr old and that is where I drew the line. I demanded to take over suppling the food. We all agreed but then the teacher started to question the nutrutuonal value of some of the foods I sent in (for example Dora or Einstein cereals). Then they tried to go back on our agreement but someone else told me or I figured it out that it was the cereal that made that teacher upset (she never spoke to me about it ever). We met last week for my son's next year and they agreed over the summer I was doing a good job of providing food and matching it to their menu (which my son could care less and the other kids didn't care but it was that Teacher again); so we went back to our agreement with only 2 changes they are concerned about calcium so they are gonna provide calcium OJ, fruit and veggies...and I provide the side dishes and main dish.

My son has an IEP not 504 due to some other disabilities he has.

And so far I have not had to worry about treats because outside food from parents is not allowed.

I checked their soaps, tooth paste and craft supplis and they are already using the right stuff. Play dough they did remove from the room but I have given them a gluten-free recipe should they ever want to add it in.

I've given handouts to staff and told them the seriousness. They keep any subs well informed of my sons allergies. They are also listed on the outside of the fridge and cabnet at the class.

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Thanks for all the ideas and suggestions! Does anyone find sending in a book or video about the allergies or Celiacs to be helpful. I am thinking about sending in some books this year-provided I find some good ones. The 1st grader has the nut allergy. The 2 yr old has dairy, shellfish, and now it looks like we can add gluten to her list.

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My dd has multiple food allergies (see below). We do not have a 504 plan because the school has been very good about it. Kindergarten was a nightmare for us because the teacher was not on board. Carleigh had the same teacher for 1st and 2nd grade and she was able to have NO reactions either year. A few times there were tears over treats that she couldn't have and didn't want the ones listed. Here's how we handle things.

1) Letter to teacher as soon as I got the name spelling out the allergies. There are 4 other students with peanut allergies so those kids were together ALL year at the table for 1st grade. They were TOTALLY sick of each other. In 2nd grade, the teacher knew all the kids and parents. There were a bunch that were responsible enough not to send in any peanut products/traces for snack. So then they could rotate seats with those kids. The teacher also included in every weekly letter sent home "Be kind to our peanut-allergy friends and do NOT send in any peanut products for snack or otherwise." It worked for the most part. There are parents who are never going to get it, though.

I recorded an Arthur show that dealt with peanut allergies and gave it to the teacher for the kids to view. The teacher said it was a good thing for the kids and it helped them to understand the allergies that some of them have.

2) Treats - I asked her what she wanted in the box and she wanted Enjoy Life cookies so I spent a bundle for a case of the little 2-packs of the cookies. When those were gone, she wanted Jolly Rancher candies. For the teacher/party related treats, I would always provide something as close as possible. They frosted cookies a few times. I provided the cookie for her, told them what frosting to buy and voluteered at the party to make sure that she had clean frosting on her plate and her own knife. They had root beer floats - I provided her ice cream. I was at every party to monitor and help (3 of the allergy parents were, mostly). The teacher was pretty good about giving us notice to plan things. At the end of the year, there were some impromptus that came up. That's where the tears came in.

3) Cafeteria - Our lunch ladies are given sheets that have the kids pictures on it and all the allergies listed. They are posted on the wall right next to them at the beginning of the serving line. The child has to say identify himself/herself and then the ladies make sure that what they pick is ok. There are 2 lunch lines and 1 is always peanut free and labelled with the no-nut sign. All that said, Carleigh was only able to eat the hot dog lunch once/month because they just couldn't accomodate all the allergies. I call ahead and let the lady know and we figure out what she's having, lol. It was usually hot dog (no bun), fruit, carrot sticks, popsicle and water. She would set her hot dog aside and wrap it. So, I pack her lunch every day except for that. Much healthier, anyway! ;)

I think I may ask the teacher if she could use the microwave occasionally for nachos, pizza etc. this year.

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Hi there, I realize that I don't have a child, but I figured I would put my two cents in since I went through all 12 years of school + preschool with celiacs.

Elementary School:

-You should definitly be in contact with the teacher, cafeteria staff, and nurse at the school. Make sure they are all well informed and know who the child is. If at all possible introduce your kid to the lunch staff and nurse, it will make them a lot more comfortable if they know they can count on them and tell them if they are having any stomach problems that they might not want to tell their classmates about..

-While talking to the teacher make sure they know that flour in the air can affect the child. Pretty much the only times I ever got glutened in elem. school where from cooking and art projects.

-Make sure the kid has plenty of safe candy/cookies, it seems like when I was in elementary school every other week was a birthday party or suprise snack from the teacher. I didn't always have something and sometimes felt left out. Eventually my mom and teachers got better at making sure I had a special box with treats for me.

-When you have class parties and everyone is supposed to bring something, sign up to bring something other than plates or soda, chances are 89% of the kids are going to bring some form of wheat, If you bring a bag of candy or gluten free brownies, your child can at least know they can pig out on that.

*****Go over with your child what they can and can not eat. I memorized from day one, "I have celiac disease, I can not eat wheat, oats, barely, or rye," and knew how to spot them on a food label. Teach them that if they ever have a question (especially when they aren't old enough to read) to go to one of those people that can help them, or to ask the teacher to call you.

Middle School

-Once your child goes to middle school, they are NOT going to want you to come in with them and talk to all their teachers and the lunch ladies and anyone else. If at all possible I would try and get emails for the teachers and email them only. Then they are going to know that if Susie says she needs to go to the bathroom, she NEEDS to go to the bathroom. Every once in a while you will get a teacher that only allows a certain number of bathroom passes per child, if that is the case you want to make sure you have told the teacher the circumstance without completely humiliating the child. (I'm not embarrassed by that anymore, but in middle school it could have killed me.)

*****By this time I pretty much knew all that I could and couldn't eat. I could read labels and spot trouble by just looking at some foods. This was the age when I started going out with friends, groups of us would get dropped off at restaruants and then go to the movies. Just make sure they know how to deal with restaruants and people.

High School

-OK, while I was pretty much on my own in high school as far as informing people about celiac, I won't lie and say this was the easiest time in school I had. By far, high school was one of the worst times eating-wise for me personally. Up until just about half a year ago I really struggled with several things.

-Not very many people bring lunches to school, this made it sort of annoying to bring one, and brought up a lot of questions from everyone. It seems like every lunch hour was about my disease and what I could and couldn't eat.

-High school is also the time for fast food. Friends are getting cars and fast food runs are all the rage. Make sure your teen knows safe foods at all the fast food places.

-I felt my disease was a burdon to my friends and family. If everyone wanted to go to subway, I would agree, and just not eat anything. Even though I could have ordered a salad, I felt left out and often times would sacrifice eating. Make sure your kid doesn't do that. I was constantly hungry.

-In high school I sort of made a joke of my disease, and at first it was OK, but slowly some of my friends felt it neccisary to ask me if I wanted a bite of the cookie or pizza, every day at lunch. That was not fun, at all. Because I was diagnosed so young my friends had never seen a difference in me with gluten and without. Eventually I had to explain to my friends that it really was a serious thing and I even showed them a picture of me back when I was sick. They were all really supportive after that, they even got the green bracelets to wear and one makes me cookies sometimes.

*****I'm honestly not sure how to avoid some of those problems. I think that some of those self-consious/awkardness things will come with the age and go with age. Just makes sure they know like the back of their hand what they can and can not eat. Help them to realize that they do have options, they just need to know how to look for them and ASK QUESTIONS. If I would have know that for all four years of high school, I probably would of had a more successful food time.

In general, always make sure they have some sort of snack with them. I try and make sure there is fruit or trail mix I can eat if I start feeling bad.

Hope that is slightly informative,

Taylor

:rolleyes:

Taylor,

I was so glad to read your post. My son just got diagnosed and he is going into 6th grade so it was great to hear a kid's perspective on this. He is being really good about it.

Reading about your high school experiences made me realize that we need to pay attention to what is happening socially when he is with his friends. He is so skinny now I would hate to think that he goes hungry.

Anne

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How do you notify the school? Writing, verbal, letter from doctor, etc? I email my kids new school early and got a call from the principle that day. What I email to them was this

SchoolGFList and

CelKidsSchool.php

you can print it off also but there is a lot of printing.

Do you have a 504 for your child? (A lot of chat about this recently.) I would not relie on the school to go gluten free right.

What do you do about crafts? Most craft are ok but find or make play dough for your child to play with at school.

Do you supply safe snack boxes? Yes if it is a young child and for older kids I pack it in the lunch boxs if they need or want a snack.

Do you supply all food and drink for your child or just some? all the time. the drink is good to freeze and use it to keep things cold.

How do you go about educating the teachers and staff? What has worked best? The hand outs and just talk to them.

How do you notify substitutes and other teachers/staff that have contact with your child? The hand outs have a sub papers that the teachers can fill out for your child.

Any other tips and tricks that you have found to be helpful? Talk to your kids let them know what they can and cant have. Be nice to the school personal and just be available to everyone.

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Hi, thanks for all the great ideas everyone. The daycare has been midly receptive to the allergies. At least it is not a NO WAY answer. I'll be in providing a brief education for the next few weeks. The elementary school will be another issue.

Jodele, Any chance you can send those attachments? I couldn't get them to open.

Taylor, Thanks for the perspective from someone who went through school. I know my 6 yr old is already showing signs of just wanting to be like everyone else and not have this nut allergy.

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Great info THANKS!

We haven't been officially diagnosed yet but from my DD's blood work I am sure the biopsy will cme back positive. She hasn't started school for this yr yet (she is going into 2nd grade) Her school has a meet the teacher day this Thursday I was wondering if I should bring up her gluten-free bneed now letting her know that the gluten-free diet will probably be in affect when she starts school or with in a week of her starting school.

My Dd knows they are testing for something in food that makes her tunmmy hurt but she doesn't know the extent of it all yet. so I don't/haven't talked about the details with her or around her until we get the official diagnoisis. I am wondering if I should call the school now so she isn't around when I talk about it. Then of course once it is officail I will get them every bit of info they need.

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What I found very helpful this year was to meet the teacher and give a brief summary type of letter. Open house night is very chaotic at our school. Then find out when you can schedule a meeting BEFORE school starts. Be childless for the meeting if at all possible. Bring all of the info you will need to the meeting. Bring books about celiacs for them to review if they are interested. Ask how food and crafts fit into the class schedule so you know what and when to supplement. Good luck

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Hi there,

My daughter is now entering grade 1, so I have had 2 years of working with her teachers. I started each year off with a brief 1 page letter which included:

1. short definition Celiac Disease and gluten

2. crafts: no lick and stick stickers (needs to use glue)

: a personal choice- but I allowed her to use all other craft materials, provided that the teacher supervised her afterward to ensure a thorough handwashing. I also requested that the tables be cleaned prior to snack/lunch to avoid cross-contamination.

3. I requested to be notified in advance of special days (pizza, hotdog....etc.....) so that I could send her a gluten free version on that day.

4. I also gave her teacher a ziploc bag of 'gluten-free' treats (halloween size baggies) to keep on hand for those times when other children bring in desserts to share with the class.

5. I also sent 1 gluten-free cupcake that was kept in the staff refridgerator freezer (clearly marked as gluten-free and with her name on it) If a child was celebrating a birthday and brought in cupcakes, the teacher just thawed hers out!

6. I clearly stated that she was not to be given any food or drink unless they were provided by or approved by her parents.

She has had 2 wonderful years of school. The teachers have been wonderful and the parents in her class have come to know her and about gluten-free. Each and every birthday party she attended the moms were more than willing to serve gluten-free snacks and ice-cream. I just sent my daughter with a cupcake and pizza (usually).

Good luck with everything and enjoy this exciting time!

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