My Kids Are The Only Ones With Celiac Disease At Their School. Same With Everyone Else?

[Polly]

Now that we have 3 kiddos in the family diagnosed with Celiac/gluten issues, I'm trying to find local buddies for them. We are the only ones in the school at this point. The school nurse is going to send a letter around to the other local elementary schools in the area to see if there are any other students in the same situation who would like some friends.

We are in touch with our local ROCK group, but they don't get together very much and are spread throughout the city.

How about everyone else, how do you keep your kids from feeling isolated? And, are they the only ones at their schools?

[climbmtwhitney]

Now that we have 3 kiddos in the family diagnosed with Celiac/gluten issues, I'm trying to find local buddies for them. We are the only ones in the school at this point. The school nurse is going to send a letter around to the other local elementary schools in the area to see if there are any other students in the same situation who would like some friends.

We are in touch with our local ROCK group, but they don't get together very much and are spread throughout the city.

How about everyone else, how do you keep your kids from feeling isolated? And, are they the only ones at their schools?

Hi Polly,

My children's elementary has about 700 kids. There are a few other gluten-free'ers, but none happen to be their friends. Most oldest two have moved on to middle school. I think that having a friend with ANY food issue can be helpful. We have a friend with a peanut & sesame allergy, one with a cinnamon allergy, one lactose intolerant with a gelatin allergy, one that's vegetarian, one that can't eat pork or beef, and one that can't eat pork. When we have a few of those friends over and throw in my gluten-free/CF/SF kids, it can definitely get crazy, but it's all doable and no one feels left out or strange. They actually laugh about it! So how about looking for a friend with a food allergy or restriction besides gluten?

Also, my kids attend Camp Celiac every year for a week. Everyone there is gluten-free! They have a blast! Do you have any gluten-free camps like that?

Jillian

[Cara in Boston]

Our school is about 220 kids. My son and one other little girl are the only kids with celiac. They happened to be in the same classroom last year and have been kept together again this year. Although that is not very many, there are numerous other kids with food allergies and lots of kids with special needs (it is an inclusion school) so everyone has their own issue to deal with and all the kids (and staff) are very flexible and understanding.

I bet you have more kids at your school, they just haven't been diagnosed yet.

Cara

[stephaniesherie]

I bet you have more kids at your school, they just haven't been diagnosed yet.

Cara

I totally agree with this one!! I see so many kids (I'm a teacher) with very conscious parents who even recognize sensitivities. I had my son tested (IGe) and he came back negative, but I avoid giving him dairy and gluten when possible.

[Polly]

Thanks for the quick replies Jillian, Cara, and Stephanie!

I hadn't thought to broaden my search out to other food allergies, that's a great idea. And, I totally agree with you about undiagnosed students (and staff, probably, too!)

Last May for Celiac Disease Awareness Month, I asked the nurse if I could send out an article to the teachers and staff about our journey to diagnosis and listed the signs and symptoms for them. She was very happy to do it, and who knows, maybe someone was able to see themselves in the article.

I'll keep you updated if anyone answers our "all call" to the other schools.

[Mizzo]

My DD's school of approx 600 students has 5 students dx with Celiac, about 4 peanut allergens , quite a few vegetarians and egg ,other allergens. My girl has been in class with, or is friends with pretty much 1 of each food restriction.

It definitely helps to expose kids to any or all food restrictions. to help them to not feel so isolated. The schools are a "social playground" it can be a help or hindrance to kids with special dietary needs , especially girls who are more sensitive .

Ask your kids if they know any other allergen kids and set up a play date.

Oh by the way , the 5/600 applied to last year . This year she moves onto upper elementary and she has no other dx celiacs ( there is 1 other child who is waiting on scope to get dx) in her new school. I am working with the lunch team setting up a safe meal plan for her ,only. I am very glad she is somewhat grounded with her restrictions.

[Darn210]

My daughter was the only one in her elementary school (about 600 kids), but she really had no issues dealing with other kids and never got any grief about her food. In general, food has not been a big deal for her, it's more about who she's sitting with/socializing with. She was diagnosed in Kindergarten and she's been very vocal and matter-of-fact with her friends and it is her "norm" and the other kids have accepted it just fine. I will say her packed lunches look fine . . . she usually takes peanut butter in a cup and dips gluten-free pretzels or apple slices. She'll take string cheese or spread peanut butter on corn thins (they look like rice cakes but thinner). The rest of her lunch looks like everybody else's . . . a bag of chips, an applesauce and a pudding or whatever.

Now she's in middle school (1200 kids) and I know there are at least a few other gluten free kids. I just went through the process of getting her eligible to buy a gluten free hot lunch and talking with the cafeteria manager, I know there are other kids but I don't know who.

Her biggest issues when she was first diagnosed were birthday parties. If it was a pizza party, I would send the snack size Kraft lunchable nachos kit (it just has corn chips, cheese sauce and salsa). Any kid would recognize them as normal kid (ummm, junk? ) food and so it didn't really attract any attention. I would also send a gluten free cupcake with frosting and sprinkles and she was good to go. For sleepovers, I usually fed her supper at home and then sent snacks to share (microwave popcorn and fruit chews . . . all mainstream stuff) and then she would take dry cereal (chex or gluten-free rice krispies) for breakfast in the morning.

I think the most important thing to the kids, at least in my daughter's case, was just that her food looked normal. If something came up (soccer league? . . . where snacks were provided after?) and she couldn't have the snack, she was always (over) compensated as soon as possible . . . a bag of skittles at the snack shack or ice cream when we got home. In the beginning, I know we let her have a little too much junk so that she wouldn't feel deprived, but once she got the hang of it, we scaled back to a more appropriate level.

Good Luck.

[Minette]

I know our school has other celiac kids, but they won't tell me who they are. Not that I blame them, I'm sure it's a privacy issue, but I would really like to know. They also have several kids who are gluten-free for other reasons, as well as all the other types of allergies/sensitivities. So dealing with the school has been fairly positive.

But I don't even know if she has another gluten-free child in her class -- usually when she finds out that someone else is gluten free, she tells me about it. It would just be nice for her because I know she feels self-conscious about it (even though eating rice mac & cheese every.single.day for lunch is her choice, not ours!).

[Gluten Free Girls]

My oldest daughter attends a school with close to 1000 kids and to our knowledge, she is the only diagnosed Celiac. Her peers have been wonderful and we just completed a 504 plan to make her daily existence easier while at school. My youngest daughter is in 2nd grade and attends a school with 800 kids. There is one other child diagnosed with Celiac but after a few months on a gluten free diet, the mother decided to stop the diet because it was just too hard and too expensive. Obviously I do not feel the same way. We do feel somewhat isolated and I too have reached out to our local ROCK group but similar to your situation, they do not have many events and they were unable to hook us up with other families in our area. Wait, are you in Georgia? My youngest daughter has befriended a little boy in her class that has a severe peanut allergy because they have that in common and have to follow the same cafeteria procedures. I often dream about having a family like ours over for dinner. My girls often say that they wonder if there are families just like us out there. While there may not be many now, sadly I hope that diagnosis becomes easier and then we will have more company. Best of luck to you!

[Polly]

Hi Mizzo,

Thanks for the suggestions! What is 5/600?

[Polly]

Janet,

Thanks for the great party suggestions! Love the stealth gluten-free snack ideas. I end up overcompensating when something unexpected comes up, too. Like the time the restaurant brought out a birthday churro for my newly diagnosed birthday girl. I was so caught up in the events I didn't even think about it, and my husband realized she shouldn't eat it. So, I left my husband and the other kids at the table while I ran her next door for the biggest frozen yogurt sundae we could get!

Gluten Free Girls,

What is the 504? Also, that's so sad about the mom giving up on the gluten-free diet for her little one. It is such a steep learning curve and easy to get discouraged, isn't it? Wish we were in GA, we'd come over for dinner. One of my dx'd kiddos is in 3rd grade and would probably have a great time getting to know your 2nd grader!

Minette,

We have an "everyday PB and J'er" here in our house. Now all we need to do is find a gluten-free bread that will still taste good at lunch time, and he will be back to his "usual" style of lunch.

Thanks, everyone, for all of the encouragement and "gluten-free Team" spirit. I really need it these days! Keep the tips coming!!

[come dance with me]

My daughter is a gluten free vegan in a totally nut free school, and we have only 1 other with a gluten intolerance (she can eat low gluten foods, but her parents try to stay gluten free where possible, it just doesn't bother them if she has chips cooked in oil that is also used for cooking other gluten things whereas we have to stay away from that), one with an egg allergy, one with a dairy allergy and several with a severe nut allergy, so any shared food in the classroom has to be free from egg, dairy, nuts, and gluten. I still take food for my daughter on those days because I can't be sure how careful people are in their homes when preparing these foods.