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School & Celiac Disease

ckmom

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ckmom Rookie
ckmom
Posted

My 6 year old daughter is in Kindergarten. We were diagnosed with celiac disease 2.5 weeks ago and I don't know what the school needs to know about celiac disease. She already knows not to share foods since she has a peanut/tree nut allergy. She has a safe snack bag in her class room. But am I missing anything that the school needs to know?

Also, a big thank you to everyone for all of the great info. you have already given my family. We really appreciate all of the help and support - this site is great!!

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Lisa Mentor
Lisa
Posted

I know there is a letter that you can supply to the school on this site. I'm sure that some of the moms can find it for you.

janelyb Enthusiast
janelyb
Posted
My 6 year old daughter is in Kindergarten. We were diagnosed with celiac disease 2.5 weeks ago and I don't know what the school needs to know about celiac disease. She already knows not to share foods since she has a peanut/tree nut allergy. She has a safe snack bag in her class room. But am I missing anything that the school needs to know?

Also, a big thank you to everyone for all of the great info. you have already given my family. We really appreciate all of the help and support - this site is great!!

I've got one that is a pdf file

Open Original Shared Link

ckmom Rookie
ckmom
Posted
  • Author

WOW! What a list. THank You, THank You, Thank YOu!!

I've got one that is a pdf file

Open Original Shared Link

FeedIndy Contributor
FeedIndy
Posted

One thing I had to make sure the school knew was to call me right away if DD forgot her lunch (it happens!), though you won't have to worry about that until next year I guess. She would forget her lunch and eat anyway. I had to reiterate that I was too be called as soon as the missing lunch was discovered so I could bring something safe for her to eat.

blueeyedmanda Community Regular
blueeyedmanda
Posted

Also you want to make sure Art supplies are ok for her to use, some paints and clay's are questionable. Play-dough is a No.

Juliet Newbie
Juliet
Posted

It was also suggested in an article that depending on how your child actually reacts to gluten, you may want to make sure that the nurse is aware of the situation and if needed your child will have access to the private nurse's restroom.

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Amooliakin Apprentice
Amooliakin
Posted

We found it helpful to have a batch of gluten-free brownies in the freezer at school so that if there were any celebrations, like birthdays, she would not feel left out. Also I'd be sure to continually check in with the nurse and teacher about mood changes and such. My daughter's main symptoms are irritability and tiredness, so if she gets gluten in her system and says she feels sick they still may not let her go to the nurse to rest if they think she is just trying to get out of doing the work (my daughter is in 2nd grade). Obviously if she has pain or vomiting there would be no question. But she does not have those symptoms any more, just the crankiness.

I would also talk to the other parents as much as possible and even go in and read a book to the class about celiac. It will make your daughter feel better understood and it will reduce the chance that another child or parent will mistakenly give her a food she can't eat.

Good luck

Juliebove Rising Star
Juliebove
Posted

Arts and crafts can be a real problem. Stuff like pasta, wheat paste and food related things like gingerbread houses. Teachers don't always understand this because the kid isn't necessarily eating what it is they are using. However, I've volunteered to help with some of these projects and it's astounding how many kids will stick their fingers in their mouths while working. I hadn't realized it because my own daughter knows not to do this.

Guest GrimTribe
Guest GrimTribe
Posted
I've got one that is a pdf file

Open Original Shared Link

Bless you!!! I can't wait to tell Steele all the stuff he CAN eat!!!

mommida Enthusiast
mommida
Posted

Make sure you have a quick private meeting with the teacher, your child where you will discuss the urgent need for a bathroom. (Too urgent to ask the teacher sometimes) Make sure there is a liberal bathroom policy that will not be abused.

L.

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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