Celiacs Disease And Schools

[SoulKitten]

Hello Everyone!

My name is Shy, and I am currently a 3rd Year law student. I am specializing in Children's and Education Law, with a focus on Special Education Law.

I am preparing to write a paper on Celiacs Disease and special education. This topic is near and dear to my heart because I have Celiacs.

My first thesis is that children with Celiacs could greatly benefit from special education or Section 504 protections (Section 504 is a civil rights statute that protects kids with disabilities - for example, making it federal law that a school must have handicapped access or a ramp for a child in a wheel chair).

If a child with Celiacs is classified under special education or 504, accomdations can be made for the child missing a lot of school, depression or to establish procedures for lunch time or "pizza parties" (How horrible is it for a Celiac's child to deal with the never ending PIZZA PARTIES?!).

This is where you come in! I'd love to interview parents of Celiac children and get your opinion on what challenges your child faces at school (if any), what changes would be beneficial, any experiences you have had with your school district that relates to Celiacs and special education (or accomodations) and any other story you'd like to tell.

I can be contacted via email at celiacpaper@yahoo.com

Once you contact me, I can send you specific questions or we can just chat and see what happens.

The second part of my paper has the thesis that a nutritionist or dietician should be available to be part of the IEP team. This is especially important for children with Celiacs and also autism (Fiengold Diet), ADD and diabetes. If you have any experience or thoughts on this, I'd love to hear about that too.

Thank you so much for your time. If you are interested in helping with my paper, please EMAIL ME.

celiacpaper@yahoo.com

I can't check all the boards for replies, so this is the best way to go! THANK YOU!!!!

[TriticusToxicum]

Bump for a good cause

[CarlaB]

Thanks for bumping Richard, I'll send her an email. Even though she's not reading the responses, anyone responding might want to post just to keep this fresh. It sounds like it could benefit many in the future.

[2kids4me]

i emailed a response

bump

[Kibbie]

I e-mailed a responce... I'm also a teacher too so I should be able to answer a bunch of school related questions too

[2kids4me]

i wanted to add this for parents with celiac kids. It is part of the response I snet. Kids with celiac should be covered under administrative policies.

They are covered under the School Act already, at least here in Alberta.

We are in the Livingstone Range School division. Because it is not a learning disorder but a food related illness - the responsibility of the school is outlined under "severe allergies protocol" . Any learning diffculties would be assessed under other guidelines. My daughter has Aspergers as well and an IEP. A child will an illness like celiac would not necessarily need an IEP. My son is diabetic and celiac and is covered under administrative policies covering children on medication as well as severe allergies and he does not need an IEP. Hope this helps

[2Boys4Me]

Sandy- I can't find the severe allergy protocol on line. I found the Alberta School Act, but nothing about allergies. Can you provide a link, or the gist of the protocol? Does it cover Celiac? Your kids would probably be covered because of the diabetes and Aspergers, but what about plain ol' celiac? Ty's school had a teacher with gluten intolerance and she never got any special treatment at meetings or anything. She was very appreciative when we sent her a piece of Ty's birthday cake though. (She's on mat leave now.)

[2kids4me]

This is the link - it is in pdf format. It's an administrative policy. The way its worded - it initally looks like it only covers anaphylaxis. BUT read the first page - it includes "certain foods" that cause life threatening illness . They do not have a policy specific to celiac cause then they would have to have list of specific illnesses and they would miss one for all kinds of food intolerances etc. By keeping it "general" it is better all around.

Gluten is damaging to a celiac and causes significant illness for the individual.

Open Original Shared Link

There is a great guidline for celiacs in school - there is a link to it on this site. If you cant find it - let me know....but it seems ot work better with schools if you remind them of their own policies

*** this is for Livingstone range , but I suspect all schools have similar protocols

[2Boys4Me]

Thanks! Today is fun lunch day and I will have to go fight the staff for the microwave. I do get a funny look from time to time, but I just say, "I have to heat this fun lunch, it'll only take a minute." I have never booted anyone out of the micro, but I'm sure it's only a matter of time.

[GraceA]

Thanks! Today is fun lunch day and I will have to go fight the staff for the microwave. I do get a funny look from time to time, but I just say, "I have to heat this fun lunch, it'll only take a minute." I have never booted anyone out of the micro, but I'm sure it's only a matter of time.

Gave my son's teacher a microwave for the classroom. She can use it too and not have to fight staff in the teacher's lounge!

[Generic]

I'm currently trying to get my daughter diagnosed, finally got a referal to the G.I. and a referal to the dermatologist (think she may have DH too). She has no classic symptoms other than she gets some D. and they can't tell me what the rash is.

It has been nothing but an up hill battle with the DR. Never mind that I have celiac and was diagnosed 18 years ago, so I know what to look for. She has been on a gluten free diet since June and when she accidently eats some gluten the rash pops up again and she gets some stomach upset.

I want to get her a 504, since the school has been getting down right rude with us. The lady in the office actually tried to refuse her excuse note! Even though the Dr. faxed an excuse note, I had to bring a hard copy since "any one could have faxed it over". That really peaved me off.

My mom went through this same b.s. with me and they denied her a 504 for me. Things were different back then.

[wonkabar]

I want to get her a 504, since the school has been getting down right rude with us. The lady in the office actually tried to refuse her excuse note! Even though the Dr. faxed an excuse note, I had to bring a hard copy since "any one could have faxed it over". That really peaved me off.

I'm sorry you're having such a hard time. I can understand your frustration and irritation as I have a 3 1/2 year old on a gluten free diet and would be most irritated if I were being treated poorly and the preschool was not being supportive of his needs. That being said, I'm a special ed teacher and can completely understand why your school would not accept a faxed copy of the letter. (My pharmacy won't accept faxed prescipritons from the doctor anymore due to "various issues".) There is a tremendous legal liability on our schools and typically policies like this are created b/c of people who tried to manipulate the system and have been dishonest. That, of course, is *not* you, but unfortunately there are people like that. That by no means excuses rude, insensitive behavior. And, unfortuntely, the district is not legally obligated to "honor" anything if the child isn't deemed eligible for services through a 504 Plan or IEP. You might want to look into the specific laws of the ADA (Americans with Disabilities Act) and see if a medical condition like Celiac Disease would be included in that. As a special ed teacher, I'm thrilled to see that a law student is focusing her thesis on this subject. I think it's awesome and long overdue!! I hope things work out for you!

My district was in court quite a few years ago with a family who moved around from district to district without disclosing previous school records and lied about their daughters Dx. This was b/c they didn't want their child to receive services. They didn't like the stigma or believe that their daughter truly needed the help...denial! So there are people who will go to extremes to get what they want and that includes blatently lying.

[vampella]

BUMP.

Had a meeting with Emmah's preschool today. not of much use, not sure why they had me come in.

Then the teacher tells me I can not watch her 100%.

well that would explain her CC yesterday at the halloween party and the big D last night. I'm gonna have to build a big bubble around her. From now on they like it or not, Iam going to these parties.

SO ANGRY. you are doing a great thing.

Char

[Mamato2boys]

BUMP.

Had a meeting with Emmah's preschool today. not of much use, not sure why they had me come in.

Then the teacher tells me I can not watch her 100%.

well that would explain her CC yesterday at the halloween party and the big D last night. I'm gonna have to build a big bubble around her. From now on they like it or not, Iam going to these parties.

SO ANGRY. you are doing a great thing.

Char

Char, I'm running into that type of attitude too. Maddening, isn't it ?? My son's halloween party was today. I'm hoping they followed the directions I gave them. He's beginning to grasp the concept that certain foods will make him sick - but only if he's told that (he's only 3), so he's still totally dependent that the adults around him will keep their eyes open for him.

[2kids4me]

What upsets me on behalf of these little ones - is the attitude towards celiac. If the child was diabetic or had a peanut allergy - they would be watching that kid !!

My children are older and able to understand what gluten does to them - so they can "talk back" whne offered something with gluten. the teachers all seem to take it seriously as well.

Correct me if I am wrong but it seems that if a young child has celiac and is in preschool - it is Like "oh, a littel wont hurt, poor thing has to without this special treat and they hand it over...??? What small child has the capacity to say no and explain it ? Why should they have to. grrrr

Has anyone used the celiac and the school sheet to give to teachers? or do they ignore that too?

I feel for all you guys with this problem in school

Link to site about celiac and school:

Open Original Shared Link

Preparing the School for Your Child with Celiac Disease

[Helena]

I agree that there is more awareness of peanut allergy these days than celiac disease, but parents of severely allergic children often get the same types of responses. People don't get that, yes, a little tiny bit of the food could cause a reaction. And they don't understand the difficulties with ascertaining cross contamination risks. I guess this is why (in the US) a 504 plan is so necessary for any child with special needs--you really can't rely on individual teachers to get it.

[wonkabar]

I agree. Unless you or your children are affected by an allergy or other issue with food, some people just don't get it b/c it's not part of their reality. I'm not saying it's right, but it's the truth.

My son has a peanut allergy and, needless to say, there isn't anything with peanuts in the house. A couple of weeks ago we had friends over and my neighbor, who I love dearly, brought a pb and j sandwhich for her daughter. I almost had a heart attack when I saw her eating it. When I made a comment about NOT going near my son and making sure that she thoroughly washed her hands and disposed of what was left, she said she knew and that's why she was sitting at the table with her daughter. It never occured to her that bringing the sandwhich into my house was the actual problem. I never took my eyes off of my son or the kitchen table. I am positive that she meant absolutely no harm and didn't even think of the severity of the situation b/c her daughter doesn't have any food allergies. I was taken back and surprised though that she did remember he had a peanut allergy but still brought the sandwhich anyway. Needless to say, next time I'll be reminding her about the peanut allergy and telling her she can't bring anything with peanuts into my house. But, again, she's not affected by it so it didn't even occur to her that it was a problem. I think more people are like my neighbor rather than just being uncaring and disinterested.

Moral of this story.............frequently remind people of these things. That includes, family, friends and TEACHERS!! I was always on top of these things with my students, but I always welcomed reminders and info from parents b/c the bottom line was they knew more about their child's medical history than I did! Kids with celiac disease should have a 504 Plan to address these needs. People take things a lot more seriously when there's a legal component to it.

[Fiddle-Faddle]

I agree. Unless you or your children are affected by an allergy or other issue with food, some people just don't get it b/c it's not part of their reality. I'm not saying it's right, but it's the truth.

My son has a peanut allergy and, needless to say, there isn't anything with peanuts in the house. A couple of weeks ago we had friends over and my neighbor, who I love dearly, brought a pb and j sandwhich for her daughter. I almost had a heart attack when I saw her eating it. When I made a comment about NOT going near my son and making sure that she thoroughly washed her hands and disposed of what was left, she said she knew and that's why she was sitting at the table with her daughter. It never occured to her that bringing the sandwhich into my house was the actual problem. I never took my eyes off of my son or the kitchen table. I am positive that she meant absolutely no harm and didn't even think of the severity of the situation b/c her daughter doesn't have any food allergies. I was taken back and surprised though that she did remember he had a peanut allergy but still brought the sandwhich anyway. Needless to say, next time I'll be reminding her about the peanut allergy and telling her she can't bring anything with peanuts into my house. But, again, she's not affected by it so it didn't even occur to her that it was a problem. I think more people are like my neighbor rather than just being uncaring and disinterested.

Moral of this story.............frequently remind people of these things. That includes, family, friends and TEACHERS!! I was always on top of these things with my students, but I always welcomed reminders and info from parents b/c the bottom line was they knew more about their child's medical history than I did! Kids with celiac disease should have a 504 Plan to address these needs. People take things a lot more seriously when there's a legal component to it.

How on earth is your neighbor to know that you don't allow peanuts in the house if you didn't tell her?

I have SEVERAL friends with multi-child families where one child is allergic to peanuts and the other is not. They do not have peanut-free houses, and, knock on wood, so far everybody is alive and healthy. I'm not saying that you should allow peanuts in your house, I just don't think it's reasonable for you to expect that they would have any inkling that they should not bring it in the house unless you make it very clear. You can't expect them to know these things if they haven't been through it themselves.

I consider myself to be reasonably intelligent and sensitive, and there is no way I would know this sort of thing without a parent telling me point-blank. Nobody in my family or my husband's has a life-threatening allergy to anything. My husband IS allergic to tree nuts, but his reactions are relatively mild.

Unless you have lived with a lifethreatening allergy in your household, or researched it very thoroughly, there is no way you can truly understand what it's like unless you are a mind reader.

I think it is commendable of your neighbor to have sat with her daughter while she at the sandwich so that she made sure it didnt end up anywhere but her daughter's mouth or the garbage can.

[wonkabar]

How on earth is your neighbor to know that you don't allow peanuts in the house if you didn't tell her?

I have SEVERAL friends with multi-child families where one child is allergic to peanuts and the other is not. They do not have peanut-free houses, and, knock on wood, so far everybody is alive and healthy. I'm not saying that you should allow peanuts in your house, I just don't think it's reasonable for you to expect that they would have any inkling that they should not bring it in the house unless you make it very clear. You can't expect them to know these things if they haven't been through it themselves.

I consider myself to be reasonably intelligent and sensitive, and there is no way I would know this sort of thing without a parent telling me point-blank. Nobody in my family or my husband's has a life-threatening allergy to anything. My husband IS allergic to tree nuts, but his reactions are relatively mild.

Unless you have lived with a lifethreatening allergy in your household, or researched it very thoroughly, there is no way you can truly understand what it's like unless you are a mind reader.

I think it is commendable of your neighbor to have sat with her daughter while she at the sandwich so that she made sure it didnt end up anywhere but her daughter's mouth or the garbage can.

I agree that it would be completely unreasonable for me to expect anyone coming into my house to know that my son has a peanut allergy and that they are subsequently not permitted to bring peanuts into my house. I also agree that it is my responsibility to inform anyone he is with that he has several food allergies. However, she does know about his peanut allergy, epi-pen and various other food allergies; these are people we socialize with all the time! That is why I was so taken back by her bringing a pb and j sandwhich into my house. I don't expect anyone to take responsibility for my children and that is exactly why I am so proactive and vigalent in terms of keeping people informed of my son's medical history and keeping my son safe. Bottom line is, she knew about the peanut allergy and should not have brought the sandwhich into my house...I don't care how commendable it was that she sat at the table with her daughter. This was not a question of intelligence or sensitivity on her part. My point was simply that some people don't understand the severity of an allergy unless they are affected by it even when they DO KNOW it affects someone else. I thought that it was implied in my post that she did know...clearly it wasn't. I hope this gives greater clarity to the situation.

I personally would never have peanuts in my house regardless of the fact that the rest of us are not allergic. This is a personal decision and not a risk we're willing to take.

I honestly don't believe you meant to come across as harsh, it's very difficult to "read" someone's tone, but you did.

[2Boys4Me]

Sorry - I don't mean to butt in, but I think maybe what Fiddle-Faddle was trying to say is: Does your neighbour know that peanuts are off limits in your house? Has she ever been told that peanuts are not allowed inside. For example, I have a friend with four kids, one is severely allergic to peanuts. She has a peanut free house. I know that because she told me. Another lady has 3 kids, one with a severe peanut allergy, but she does allow peanuts in the house.

It's one thing to be aware of the allergy and quite another to know the house rules of no peanuts allowed.

Maybe that's what Fiddle-Faddle was trying to say.

[Fiddle-Faddle]

Thanks, 2boys4me, that's exactly what I was trying to say.

Wonkabar, I apologize for sounding harsh.

.

[wonkabar]

Thanks, 2boys4me, that's exactly what I was trying to say.

Wonkabar, I apologize for sounding harsh.

.

No sweat!

Yes, she does know that we don't "do peanuts" in our house. She's a dear friend who I know did not intentionally put my son in harms way. I just think she either forgot or, more likely, just figured it was okay as long as she was sitting at the table. Her daughter doesn't have any allergies or food issues, but they are very protective of her none-the-less. That's what was so shocking to me. She's also very cognizent and supportive of my son's issues with gluten and always makes sure she has stuff for him to eat and watches what he eats when we're at their house. So it was, again, equally as surprising to me that she brought the sandwhich. I will obvioulsy reiterate the fact that we don't have peanuts in our house under any circumstances.

Unless someone is directly affected by an allergy, or a medical condition like Celiac Diesase, it's very difficult to fully comprehend the magnitude of it's effects. This happens all too freuqently with friends, family and at school. People don't do these things due to a lack of intelligence or sensitivity; it's simply the result of a lack of knowledge and understanding. My very best friend in the whole world accidentally brought over pb goldfish for her daughter one day. Her daughter doesn't have any food related issues so this was a force of habit for her. *BUT*, as soon as she pulled the bag out of her diaper bag she realized what she did and that her daughter couldn't eat them at my house. She ultimately threw them away. This is my best friend who knows everything about my kids, but her life isn't effected by an allergy so she did something that was second nature to her. Now she won't even give her daughter pb when I'm over with my kids.

***************************************************************************************************

The original point I was trying to make in my original post was that even people we are close to can't fully comprehend food related issues unless they are directly effected by something of that nature. (I was also letting other moms know that I understand their frustration and irritation.) So, in order to safeguard our kids who have medical conditions that warrant explicit attention such as Celiac Disease, a 504 Plan is the way to go. This holds the district legally responsible for ensuring that the child's needs are being appropriately met regardless of anyone's opinion.

I applaud this law student's efforts for giving Celiac Disease the well deserved and needed attention within our school communities. Not all school staff and teachers are rude and uncaring; these people are the exception not the rule. Over the years I've worked with *many* wonderful teachers and support staff who have walked the extra mile for their students and never thought twice about it...I was one of them.

[almostnrn]

I just don't know how you all do it! I am the only celiac (at this point anyways) in my family and as an ADULT its difficult to explain, understand, not get stuff cc, etc., I can't imagine how it is for a child to cope with. I also remember how difficult it was to let my little ones go off and be independant in pre-school and this was without food concerns or allergies. My hats off to each and every one of you!!! I really believe that your vigillance will make a difference for the celiac community and the kids to come. I know, it doesn't make it easier now but there will be another parent with a child that has been diagnosed down the road and because you have taken the time to really educate the people with whom your kids come in contact with it will continue to get better. Secondly, I wish there wasn't such a misconception about allergies. So many people think of it as a rash or a stuffy nose and don't get that it could be life threatning. My 9 year old daughter has a friend with a severe milk allergy. Needless to say, her mom doesn't have to sweat it so much when she comes to our house to play...we GET IT here, lol. Hats off to all of you! I know you are just caring for your kids and protecting them but in the process you are helping the celiac community!

[Guest nini]

I think I've been really lucky with the caregivers in my daughter's life. When she was in pre-school, they saw how sick she was before going gluten-free, and then how quickly and dramatically she got better and they were more than willing to do whatever it took to keep her healthy. Our school district with elementary school so far has been great. We have an IEP plan in place with the school nurse's help, and the county dietician for the lunch program and the schools cafeteria manager both met with me to coordinate safe menu plans for my daughter to be able to supplement her lunch from home with hot veggies and fresh fruit and other items. My daughter's kindergarten teacher had severe allergies and was extremely aware of all the issues surrounding this, and her current first grade teacher has a grown son that has always had severe food allergies, wheat being one of them. So she doesn't do many (if at all) food activities and she asks me ahead of time if they are going to do something. Like when the class won a pizza party, I was able to provide my daughter's pizza for her and she didn't feel left out.

The school nurse has been amazing in this journey, she's been more than willing to learn all about celiac/gluten intolerance and wheat allergies and so far she said she suspects at least two other kids in the school have it and she's suggested to their parents that they get the children tested. Hey, it's a start, right? The county dietician said that there is one other child in the county that buys gluten free lunches and I was surprised and impressed that they already had an extensive list of the cafeteria menu items that are gluten free, verified. Including such kid favorites as cheese nachos and tater tots!

[*~jOaNnA~*]

Well i'm a student with celiac disease and last year I missed 28 days of school due to celiac disease and no one understood what was going on, i didn't even know at the time. I was sick all the time and people were just blowin' it off and sayin' you need to be in school when in fact whenever I went to school I would occasionaly go on myself. The school even questioned whether to let me graduate or not. I did, but I was so sick even during graduation activities like the senior trip to a theme park, graduation practice and such. If I wasn't really sick then why would I INTENTIONALLY miss things that I'm suppose to remember for the rest of my life? Principals and assistant principals even questioned my doctors notes. They thought I was missing school just not to go. It was so hard waking up each morning trying to get motivated to go to high school when in between putting on each peice of clothing your running to the bathroom, and then KNOWING that it's going to happen at school too.

Before I found out what was wrong with me and why I was constantly running to the bathroom, graduation was right around the corner and the girls had to wear all white and our robes were white. I was so scared that in the middle of graduation it was going to hit me and I'd go on myself because I wouldn't be able to just get up and walk out. So my parents, well my mom said that maybe I should wear a depends during the service and then just take it off when I get home, but I was NOT going to wear a depends. Thankfully nothing hit me, I mean it did but I didn't go on myself. I was in a complete body sweat, with my legs shaking the whole time during graduation because I felt it. But I do think that schools should acknowledge Celiac disease it's so hard tryin' to deal with it in school, especially when you go to a school that has no doors on the bathroom stalls. Dealing with this my last year of high school, my senior year, was probably the hardest thing I've EVER had to do.