For Those Of You That Had A Dx For Most Of Your School Career

[NewGFMom]

Hi guys,

My son is only 4, but he'll be starting his public school career before I know it. I'm just wondering what your parents did for you that helped you cope with eating different stuff from the rest of the kids, both during school and with your friends, etc.

I want him to be safe, but I also don't want him to be sick. And I REALLY don't want him to get picked on for being 'different.' He's a really independent guy and doesn't care about food that much at all. But I can envision other kids trying to slip him gluten to see what happens.

What helped the most? What helped the least?

Thanks so much!

Margaret

[MJS]

I was diagnosed when I was 14, so it wasn't hard for me to handle on my own.

My sister, however, was younger. My parents talked to her teachers before the school year started and explained about the diet, and not to let anyone give her food. When they knew she was having a class party or something, we would bake gluten-free cookies or brownies the night before and give her some of those to take.

I don't think other kids would intentionally slip your son gluten if they knew about his problem. Some of my best friends, who are 16 and 17 and know all about celiac, forget all the time and just hand me food. So I suggest you teach your son not to eat anything he doesn't get from home.

Good luck!

[Guhlia]

That's such a great question for the Celiac moms and moms-to-be. Your question may be better answered if you ask your local ROCK (Raising Our Celiac Kids) group. Maybe not though. I'll be very interested to hear what people have to say.

[NewGFMom]

I can ask parents, but what WE think is helpful, isn't always what is ACTUALLY helpful!

There is a fine line between 'helping' and embarrassing your kid. I was hoping some teens on this board could help me know the difference.

[taylor-]

Hey!! Actually back in like..august when school was starting they started a topic in the Parents/kids section of the board, it is called like "school tips from the pros" or something..but i decided that I would post my experiences in school, since i have had it since i was 18 months..ill just copy and paste it here..this is what i said...

"Hi there, I realize that I don't have a child, but I figured I would put my two cents in since I went through all 12 years of school + preschool with celiacs.

Elementary School:

-You should definitly be in contact with the teacher, cafeteria staff, and nurse at the school. Make sure they are all well informed and know who the child is. If at all possible introduce your kid to the lunch staff and nurse, it will make them a lot more comfortable if they know they can count on them and tell them if they are having any stomach problems that they might not want to tell their classmates about..

-While talking to the teacher make sure they know that flour in the air can affect the child. Pretty much the only times I ever got glutened in elem. school where from cooking and art projects.

-Make sure the kid has plenty of safe candy/cookies, it seems like when I was in elementary school every other week was a birthday party or suprise snack from the teacher. I didn't always have something and sometimes felt left out. Eventually my mom and teachers got better at making sure I had a special box with treats for me.

-When you have class parties and everyone is supposed to bring something, sign up to bring something other than plates or soda, chances are 89% of the kids are going to bring some form of wheat, If you bring a bag of candy or gluten free brownies, your child can at least know they can pig out on that.

*****Go over with your child what they can and can not eat. I memorized from day one, "I have celiac disease, I can not eat wheat, oats, barely, or rye," and knew how to spot at least those 4 on a food label. Teach them that if they ever have a question (especially when they aren't old enough to read) to go to one of those people that can help them, or to ask the teacher to call you.

Middle School

-Once your child goes to middle school, they are NOT going to want you to come in with them and talk to all their teachers and the lunch ladies and anyone else. If at all possible I would try and get emails for the teachers and email them only. Then they are going to know that if Susie says she needs to go to the bathroom, she NEEDS to go to the bathroom. Every once in a while you will get a teacher that only allows a certain number of bathroom passes per child, if that is the case you want to make sure you have told the teacher the circumstance without completely humiliating the child. (I'm not embarrassed by that anymore, but in middle school it could have killed me.)

*****By this time I pretty much knew all that I could and couldn't eat. I could read labels and spot trouble by just looking at some foods. This was the age when I started going out with friends, groups of us would get dropped off at restaruants and then go to the movies. Just make sure they know how to deal with restaruants and people.

High School

-OK, while I was pretty much on my own in high school as far as informing people about celiac, I won't lie and say this was the easiest time in school I had. By far, high school was one of the worst times eating-wise for me personally. Up until just about half a year ago I really struggled with several things.

-Not very many people bring lunches to school, this made it sort of annoying to bring one, and brought up a lot of questions from everyone. It seems like every lunch hour was about my disease and what I could and couldn't eat.

-High school is also the time for fast food. Friends are getting cars and fast food runs are all the rage. Make sure your teen knows safe foods at all the fast food places.

-I felt my disease was a burdon to my friends and family. If everyone wanted to go to subway, I would agree, and just not eat anything. Even though I could have ordered a salad, I felt left out and often times would sacrifice eating. Make sure your kid doesn't do that. I was constantly hungry.

-In high school I sort of made a joke of my disease, and at first it was OK, but slowly some of my friends felt it neccisary to ask me if I wanted a bite of the cookie or pizza, every day at lunch. That was not fun, at all. Because I was diagnosed so young my friends had never seen a difference in me with gluten and without. Eventually I had to explain to my friends that it really was a serious thing and I even showed them a picture of me back when I was sick. They were all really supportive after that, they even got the green bracelets to wear and one makes me cookies sometimes.

*****I'm honestly not sure how to avoid some of those problems. I think that some of those self-consious/awkardness things will come with the age and go with age. Just makes sure they know like the back of their hand what they can and can not eat. Help them to realize that they do have options, they just need to know how to look for them and ASK QUESTIONS. If I would have know that for all four years of high school, I probably would of had a more successful food time.

In general, always make sure they have some sort of snack with them. I try and make sure there is fruit or trail mix I can eat if I start feeling bad.

Hope that is slightly informative,

Taylor"

hope that helps..again, sorry its so long..

[Stargate-geek]

I was diagnosed when I was 9, so I was in elementary school at the time. Most of the kids were nice and didn't ease me, but there were some times.

One of the best things is to have a 'cool' lunch. That doesn't mean it has to be really expensive and over the top, but cool. Include a slice of pizza, a really big cookie, piece of cake or something like that. Something that makes the other kids say 'I wish I could have a cool lunch like yours!' and then they won't tease you have having a 'lame' lunch. I've found that most of the gluten-free cookies freeze really well, so you can make a whole bunch and then use those, they're be thawed by lunch

As well, if the class has snack time, make sure the teacher is 100% aware of it (and that it's not just wheat, barley, malt and things like that too.) Seeing as most snacks will be animal crackers, cookies, pretzels and things like that. Bring in a bag of celiac friendly options. That way, he won't miss out. It'd also work better if they were really cool things that he only got at school, vs home, so they don't seem old and lame!

That's my two cents worth

[kbtoyssni]

I wasn't diagnosed when I was a kid, but I did bring my lunch every day. My mother was big into health food so I had a sandwich (on my dad's homemade bread), apple, pretzels and milk every day. I hated it, and was embarrassed by it and didn't like to eat most of it. It's boring, the bread looked different that everyone else's and was crumbly, I never liked the taste of milk, and apples weren't my favorite fruit. I would have been so happy with a juice box or granola bar.

Now that I'm old make my own lunches I usually have a salad (which I love!), string cheese, some sort of leftovers from last night (like cold pizza or Indian food or Thai ramen noodles or lasagna - I realize some of these are hard if you don't have a microwave) or rice/baked potato with melted cheese and salsa, sometimes a Dove chocolate or two, some piece of fruit. I occasionally eat "junk" food like the chocolate or some chips. I know it might not be the best thing for a kid to eat all the time, but one serving of this stuff a day isn't going to kill a kid and it will go a long way towards making him "normal". I'd ask him what he wants to eat. He'll probably want to eat something similar to his friends, and you won't know what that is until you ask.

And get him a fun lunch box. I loved my lunch box in first grade, but by fourth grade I was embarrassed by pink Minnie Mouse. All my friends used brown bags, and I wanted to use them, too.

[swimchicky]

For people my age it's usually not a problem. With smaller kids though, talk to the teacher and explain the situation. you might also want to pack food for lunches and snacks and class parties that looks the same or similar to the "regular food" so he dosen't feel different, but he will eventully get used to it. Good Luck!

[whitney728]

I was DXed at the end of my senior year of high school, and I honestly feel like it would have been easier if everyone had known all along. I have one friend with a peanut allergy, and everyone is used to dealing with that because he's had it as long as we've all known him, but I still find myself attempting to explain celiac disease to my high school friends! ("but why don't you want to go out for pizza?" is a typical conversation starter when we're planning our nights.) So yeah, I think that once you explain it to his peers, it'll be a little easier than if he was diagnosed when he was older.