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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Do I Notify The School
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4 posts in this topic

Does anybody have a sample letter or tips on how I notify the school about Nicholas' gluten-free Diet? We're finishing up the tests and he will start the diet next week. He is Special Needs with an IEP so he goes to school 11 out of 12 months of the year(No school in August for him) We have an IEP meeting next week and I need to know if his gluten-free diet should be included in his IEP somehow. He does not have the celiac disease diagnosis because his biopsy was negative, he will get it after a 1 year FG diet with improvement of his symptoms though.

I am asking the Dr for a letter stating that his gluten-free diet is medically necessary because I know otherwise I'll probably have a tough time with the school. What else do I need to do to orepare for this.

THANKS!

Maryanne

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In addition to the letter from the doctor stating that he needs to be on the gluten-free diet for at least one year (it can be updated next year if he needs to stay on it), you should also include a letter stating what a gluten free diet entails. Lists of foods and ingredients your son cannot have, and lists of foods he can have. Also included should be non-food items such as play-dough and licking stickers/stamps and such. You should stress how important it is to strictly adhere to the diet and that he should never be allowed to "trade" food with others. With a doctors note you should not have to have the official diagnosis. It sounds like they are using the diet as another test, so it should be enough.

You will probably still have to monitor him in school fairly closely, since substitutes will not usually be adequately informed and class parties happen with sometimes no notice.

Will you be sending lunch or will he be having the school lunch?? I have always sent a sack lunch, since my kids were always picky and never liked the school lunch even before going gluten-free. So that has been easier for us to stick with what we were already doing, rather than try to get the school to maintain a gluten-free meal for them everyday. But by law the school has to comply if you have doctors orders for a gluten-free diet.

God bless,

Mariann

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Mariann,

First off I need to thank you for being such a great help to everybody here. You are always quick to respond to my posts no matter which folder I have posted in and I have gotten so much information from you. Everytime I start reading something new I don't even have to scroll to the bottom to see it's from you. Thank you from the bottom of my heart for helping me as much as you have so far and taking away 90% of my concerns :)

As for your question - yes I am going to send in a sack lunch. Nicholas is a picky eater, but the school has several items to choose form daily so if he were able to eat them he would find something he liked but I thought without a celiac disease diagnosis I had no leg to stand on.

I just bought him an insulated lunchbag with a matching backpack from LL Bean and I found a 10 ounce insulated non-breakable bowl so I can send in gluten-free mac and cheese and gluten-free spaghetti so he's not reduced to PB&J on gluten-free bread every day :) That made my day. I wanted to ask them if they could accomidate him every friday though for Pizza day - with a gluten free pizza - would the school have to do that if I ask - or are they only required to provide a gluten-free meal of their choosing - weather it's something my son would like or not? I would love to ask for gluten-free lunches, but I have visions of them trying to feed my 6 yo a grilled chicken breast on lettuce or something else totally inappropriate for my child's taste.

I am just not looking forward to this with them. I think it's going to be a battle which I don't want to have to do. I had to battle them last year just to get them to provide a car seat for him during the summer session when he had to ride on the big bus (He's a 28 lbs 6 yo - the size of most 2 yo's During the school year he was riding on a small bus with all of the other Pre-School Disabled kids in car seats and they wanted to put him on the big bus without a car seat!!!) There's already a bad taste in my mouth from that battel so I just am trying to brace myself fo rthis one too.

What has everybody else done for theirt kids for lunches? What kind of lunches are the kids who get gluten-free meals served at school?

Maryanne

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Maryanne:

Even if the school would be required to provide your son with a gluten-free meal (which is a big if), they would not be required to provide him with the gluten-free meal of his choosing (i.e. they could choose to do a chicken breast as you had asked).

I am assuming that Nicholas attends public school, or at least a school that receives federal funding. A lot of the answers to your question will be affected by whether that assumption is true.

I would recommend that you contact either ROCK (Raising our Celiac Kids) or GIG (Gluten Intolerance Group) as I think I heard/read that they have sample letters you can use for school accommodations. You might find this helpful.

In addition, if you find that your local school authorities (principal, teacher, etc. within the school) are not taking you seriously, I think you shouldn't hesitate to (1) give them a chance to correct this; but if they don't, then (2) elevate the matter to your school district (superintendent, board, etc.).

Good luck,

Kim

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