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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.

Public Schools Shrugs Celiac
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22 posts in this topic

I am a stay at home mom of 2 celiac daughters and I have celiac myself.  We are in our first year of kindergarten 1/2 day and its been a ride.  At the beginning of the year I swear I did everything I could to prepare the school for my daughter to enter a safe learning environment.  I met with the nurse and provided a safe list and an unsafe list for food and crafts etc.  At the time my gut didn't feel right with her and I now kick myself for not drilling her knowledge but I can't go back now.  Fast-forward to the holidays..  YIPPEE  Not quite.  The gingerbread man visited Kindergarten and shared all of their cookies with the children.

 

My daughter is the only one her class that is gluten-free with celiac.  It is labeled in her lunch box in her file and drilled in her brain.  Peer pressure got the best of her when her teacher gave her a cookie and then she brought the rest home!  At 5 years old I do not blame her.  So when I notified the nurse that my daughter was given poison (gluten) in the classroom she insisted that it was just the flu.  My daughter missed her first 3 days of school because of a gingerbread man foot from the teacher.

 

I am extremely frustrated and need to know how to truly relay my message that this is no joke.  I have provided medical documentation.  Emailed links and images of reactions etc.  I contacted our GI doc and he just offered to write a letter.  I don't know what I am really looking for from them but full of rage because of this incident.  Every other school I ask about says that they can't feed the children unless they check with the nurse.  My daughter really suffered from this slip and I feel like she was the only one who learned a lesson --the hard way.

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I would notify the head, this is unacceptable from them.

My daughter's school has been amazing - it helps that her nurse and teacher are on board and they call me if something is beng offered that is questionable.

 

They were fully informed about it - they have no excuse. I would call for a interview with the head.

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Is this a public school in the US? If so, you need to get a 504 plan on the books!

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I completely agree with StephanieL  :)  I am a public school teacher and 504s must be followed or serious legal repercussions can take place.  Even though it seems like you've done your part obviously the school is oblivious to the needs of your child, so it's time to amp it up by getting a 504 plan in place to show the school you mean business.  I think the most important people to alert of your child's needs are the school nurse, classroom teacher, who unfortunately both don't seem to be doing their job, cafeteria head and aides, and all other teachers your child comes in contact with art, PE, computer and music.

 

I teach music, and although I review the medical alerts and make notes in my gradebook about children and their medical conditions, it's great when the parent sends me a direct e-mail to let me know about their child's needs.  Don't solely rely on the classroom teacher to send an e-mail out to the specialists in the school, if the e-mail comes directly from the parent that always heightens my awareness.

 

I still don't understand that we have all these peanut free zones in schools, but yet why don't we have gluten-free zones  :(

 

 

Is this a public school in the US? If so, you need to get a 504 plan on the books!

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Wow! I'm so sorry mama! That's insane. Definitely get the 504 since they might take that a little more seriously. I'm lucky that my daughter's school isn't as crazy. Although we haven't gotten confirmation yet about the celiac we were told lactose intolerance for sure and we're waiting on more results. The school has been great about being careful of her needs and her teacher especially. I think it works in my favor that the teacher's son unfortunately has an odd disorder himself so she knows what it feels like to have a kid with different needs. Get the 504 and the letter from the doctor if you haven't already. It should help heighten their attention since they won't want to risk a lawsuit.

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I still don't understand that we have all these peanut free zones in schools, but yet why don't we have gluten-free zones  :(

 

That's because the likelihood of dying for peanuts is much higher than a glutening.  There aren't milk or egg zones either.  Each school needs to do what they need for it's students and for some peanuts/nuts will kill students. The same could be said for milk/eggs/fish and on and on. There ARE ways to portent all these kids if everyone would just work together!

You need to find out who the 504 coordinator of the school is and send them a meeting request for a 504 due to Celiac disease.  At that point they have 30 days to have the meeting. I also cc'ed the principal, school nurse and assistant super.  I included a note from our Dr's as well as to what life functions are impacted by Celiac (GI being the main one).  I would have your list of accommodations ready to go when you have your eligibility meeting incase one rolls into the other. 

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that does make sense, but I still wish they did have something  :(

 

FWIW, I would caution about first ccing the assistant superintendent unless your child is part of a small district.  I would keep it in house first out of respect, but if they drag their feet setting up the meeting then I would resend the e-mail and include him/her on the second go round.  In my district the 504 coordinators are the school counselors.  They are the ones who have all the students 504s on file and send updates when needed.

 

If you choose to bring an advocate with you for the 504 meeting, I would e-mail the 504 coordinator and meeting team ahead just as a heads up that someone else will be joining you, so they are not surprised at the meeting.  In addition, you have every right to question who will be at the meeting from the school's side.

 

I realize that the school has not been accommodating thus far, but doing the above items will help to keep your relationship with the school hopefully a more positive experience heading forward since your daughter is only in kindergarten and she will be with that staff for awhile.

 

here is a recent thread with specifics of what would be good to include in the 504 plan:

 

http://www.celiac.com/gluten-free/topic/105496-504-plan/

 

good luck!

 

That's because the likelihood of dying for peanuts is much higher than a glutening.  There aren't milk or egg zones either.  Each school needs to do what they need for it's students and for some peanuts/nuts will kill students. The same could be said for milk/eggs/fish and on and on. There ARE ways to portent all these kids if everyone would just work together!
 

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My daughters 2nd grade teachers gives me a heads up when they are having a class party. When they did gingerbread trains I brought in her own special foods. She also has a box of gluten-free cookies at the teachers desk so that when they celebrate a birthday she has a special treat as well. If they are literally giving her foods that have gluten they are extremely irresponsible. I am sure someone in the school bylaws that they have to accommodate kids with allergies. Go over their heads for sure. And shame on them.

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I am sorry that this happened to you.  Schools vary widely with how they treat a celiac child.  At my son's school, despite extensive documentation about how to treat his condition, they gave him gluten and then the principal threatened to call child protective services on me when I didn't send him in sick.  He had already missed a lot of school before getting the diagnosis.  I contacted the superintendent of schools and things improved.  He is still in the same district at a different school and they are still not dealing with it terribly well.  Things will improve over time as they have experience with more of these children.  Meanwhile we pioneers need to educate and advocate for our children.  I wish you the best.

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I'm with everybody else - she needs a 504.  Until you have something in place the school isn't held responsible for keeping her safe.

 

My daughter's school has the nurse as the 504 coordinator.  Also included in the meeting are: Principal, Vice Principal, Teacher, Grade Counselor (school has two) and the Manager of Health Services for the District.  Once we get something in place I really like the idea of contacting the Specials teachers to just stay on their radar.  This is going to be my first of two celiacs in the school so I'm trying to be super helpful now knowing that I have a good decade dealing with these people.

 

You need to find out who the 504 coordinator of the school is and send them a meeting request for a 504 due to Celiac disease.  At that point they have 30 days to have the meeting.

Stephanie - where did you find that 30 day time frame?  I have tried googling it several times (after you mentioned it before), but I'm not finding anything stating so.  Is it state specific?  I got the GI's note with DX in to the school on 11/12 and still haven't had a meeting.  To be fair we had a snow day on the originally set date and then two weeks later we started winter break (two weeks long - which turned into three weeks with more snow days).

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I had success googling the following phrase:  30 day request for 504 eligibility meeting

 

take a look at page 10 of this document:  http://www.advocatesforchildren.org/sites/default/files/library/section_504_guide.pdf?pt=1

 

hope this helps africanqueen!

 

 

 

Stephanie - where did you find that 30 day time frame?  I have tried googling it several times (after you mentioned it before), but I'm not finding anything stating so.  Is it state specific?  I got the GI's note with DX in to the school on 11/12 and still haven't had a meeting.  To be fair we had a snow day on the originally set date and then two weeks later we started winter break (two weeks long - which turned into three weeks with more snow days).

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I'm looking for DOJ stuff too but there is a place in the above document stating 30 days. The one thing I would caution is that I would never include my list of accommodations BEFORE getting the eligibility squared FIRST!  Sometimes schools will see what you need and decide to deny the 504.  Celiac qualifies. PERIOD. After you get the eligibility THEN and only then should you "show your hand".

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I would talk to the principal and the superintendant. I would ask them if they are as lax about peanuts as they are about gluten and point out to them that THEY made your daughter sick because of that laxness. I would get the letter from the doctor, and then ask to review everything you have already given them. Then, I would mention the word "lawyer".

 

I'm not syaing you should sue, but if they fear that you might, they will probably get ALL the teachers and staff together and go through the protocals for all students with medical issues. I'm sure there are other kids in the school with either celiac or allergies. You would be doing all of them a favor by pushing this issue.

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Can we PLEASE stop equating a peanut allergy to being glutened. They are two completely different things. Glutening is BAD. Very bad.  One single glutening is highly unlikely to be fatal. 

 

 

I would tread very carefully. You are already meeting some resistance and I would try the "kill them with kindness" before you start any kind of discussion in a threatening tone.  You have a lot of years to deal with these people and if you have more littles at home that is extended.  It's about being firm with them and getting what your daughter needs with the minimal disruption to the daily inns and outs of the school day.

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Yes, peanut allergies CAN kill, but often they don't kill, but cause severe asthma-like symptoms. And other allergies can trigger asthma too. My step-son had asthma and missed a lot of school. A child with celiac will miss a lot of school if she is constantly glutened.

 

The OP said she had "done everything she could" to insure her child would not be given gluten, and yet they did not heed the instructions they were given. It is my opinion that something more should be done.

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I had success googling the following phrase:  30 day request for 504 eligibility meeting

 

take a look at page 10 of this document:  http://www.advocatesforchildren.org/sites/default/files/library/section_504_guide.pdf?pt=1

 

hope this helps africanqueen!

Awesome!  Thank you so much.  We are past the original 30 days, but we had that cancelled due to snow.  I sent the nurse an email on 12/20 (first day of winter break) asking to get on the books in early January because "the longer she goes without a formal safety plan the less secure I feel sending her to school."  Today is the first day back at school since I sent that email.  Yes, it's been a long break!  Too long.

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Yes, peanut allergies CAN kill, but often they don't kill, but cause severe asthma-like symptoms. And other allergies can trigger asthma too. My step-son had asthma and missed a lot of school. A child with celiac will miss a lot of school if she is constantly glutened.

It is the most likely to kill. THAT is why schools are so aware of it. 

 

Africangueen99- DO call the school on Monday!  You are SO right about "the longer she is without a plan".  She's lucky to have a Mom like you for sure to be getting this all in order for her!  So many things slip through the cracks with vacations and then weather related time off (we had 3 weather days off in a row!  Unheard of in my time!!)  I had some 504 questions that came up before school let out and I mentioned them that day and sent a follow up to the principal, nurse and DS's teacher yesterday.  It's so much to keep up with at times but SO worth it!

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I will be meeting with the school Principal on Monday in regards to a new school food policy. Very frustrating it's taken my daughter's health to get this accomplished. I appreciate all the helpful hints to keep her safe. Not sure why a 504 was never mentioned in the beginning of the year by the nurse. I had no clue this even existed. Thanks again so much. Wish me luck!

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Most schools don't inform parents of the existence of 504's because they do take some time/money for the schools to do in the way of meetings and they don't get any funding for them. 

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Tell them you will make a law suit if they don't abide by these orders. In one school that I sub teach in they have a big poster in the class and in the teacher's room of food allergies of the students. Make one yourself and hang it in the teacher's room. I am sorry this is happening. Also I know that if schools cannot serve your student, it is your lawful right to attend another school. I don't know how to go about that. I just know it is law in CA.

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It's not likely to get better.  Even though I spoke to everyone at the school and put things in writing, I only had one teacher who actually "got" it.  Actually he was afraid to give any of the "food allergy" kids any food at all.  All kids with a food issue were lumped together and he didn't want t be respsonsible for them so he put me in charge.  This included one kid with a life threatening peanut allergy.  At each school party I had to sit through her harrowing tale of how peanuts almost killed her.  It was a tense time for me.  I went to great lengths to ensure that the food was safe for all of these kids but...  It also wasn't very exciting.  One kid had a corn allergy also couldn't have yellow dye #5.  And my daughter and another girl had multiple food allergies.  There was one girl with celiac.  Mostly I had to stick with things like fresh fruit, Enjoy Life Foods or candy from the health food store with vegetable colorings.  It was somewhat of a sad time for me because all these kids were isolated from the others and when we did projects like the Christmas sleighs, I knew that ours couldn't look as good because we couldn't use the graham crackers or pretty candies.  Yes, I know there are gluten-free graham crackers but at the time I couldn't find them in any stores and there wasn't time to mail order.  They only gave me 2 day's notice for this project.  So while I knew that I was keeping these kids safe and they wouldn't get sick, it also wasn't the same.  I also freaked a couple of times when kids noticed that our stuff was different.  They ran by and grabbed things from our table, rendering them unsafe. So I had to dump out those bowls of things.

 

Throughout the years, my daughter has been requred to make things with wheat pasta, touch M & M's (dairy and nuts), and Twizzlers for math and science things.  She was really peeved over the Twizzlers.  Had to do with teaching fractions.  And the teacher herself had a dairy allergy so I thought she would get it.  Nope.  Daughter was told if she didn't pass out the Twizzlers to her group, she would fail. 

 

Best I could do there was to tell her that she had to was her hands well afterwards.  She does not have celiac but food intolerances and so much as touching wheat would give her a rash.

 

Now sometimes I got advance warning and I could send in suitable substitutes for things.  But quite often there was no warning at all.  Some parent brought something in or there was a substitute or something.  Daughter refused to eat any food that hadn't been sent in by me but...  There were still many times when she had to have contact with things that she shouldn't.

 

Jr. High got better.  That was when she had to make the car with wagon wheel pasta wheels.  No gluten-free pasta like that, that I've ever seen.  She's in High School now.  They have not had to use food in the classroom so far.

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it might be a bit of a stretch but might that teacher who threatened her about the twizzlers be guilty of assault?

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