Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Do I Notify The School
0

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,142
    • Total Posts
      919,559
  • Topics

  • Posts

    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,174
    • Most Online
      1,763

    Newest Member
    Mnoosh
    Joined