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I have 2 children about to be tested for celiac disease. My dx was in 1983. Winter weather is delaying the testing, but dr gave ok to start gluten-free diet as one is showing typical symptoms & one of my other children was diagnosed at age 21 (3 other adult children, never tested). As long as tests are run soon (next week) he says this won't affect results/conclusions of upcoming labs and tests.

 

The testing for celiac disease has changed dramatically since 1983. But managing it is still the same. But managing CHILDREN with celiac disease is new to me. They are only 6 and 8 yrs old.   I'm prepared and knowledgeable of gluten-free homes/kitchens.  The kitchen is gluten free and we're implementing rules for those (husband & daughter) who still consume gluten.

 

I'm not sure how to manage this when they are away from home, though. My biggest concern is at school. How can cc be managed in a school lunchroom (crumbs on tables, little kids eating habits)?? Kids with peanut allergies are seated at their own table. Is this plausible for celiac disease? What if there are no other kids at his school? Similarly, when parties are held in classrooms and desks are arranged touching each other (groups on 4)... do I ask the teacher to rearrange her classroom?? Will I have to make waves to get the help my kids will need? (I'm uncomfortable making waves :s) Will they understand the how important 100% gluten-free is, since symptoms are not like an outward allergic reaction??  ANY advice would be appreciated!!   (I will begin by pulling myself together and giving a listen to you all!!)

 

 

 

 

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First off....hugs! You at least have the experience of already living for quite some time with things, so it isn't quite the unknown for you. I think some experience/knowledge would have been incredibly helpful for us, maybe eased some of the initial panic. :) But I also know dealing with young kids with a disease is a whole different ball game.

 

My little guy is 6 too, just diagnosed 6 months ago. We're still learning. So far our experience with schools has been positive. Generally. My son's teacher's MIL is Celiac so she understands and is incredibly helpful (even if she does forget to tell me about upcoming birthdays!) I've only had one issue and that was him eating his lunch at snack time one day and then the lunch ladies giving him fruit and veggies (thankfully though, the student teacher at the time was going to the lunch room with them and made sure they didn't give him a peanut butter sandwich like they usually do!)

 

I've seen talk of setting up 504 Plans....but as of yet, I haven't done one. Not sure how beneficial they are for this type of thing. But I'm a bit....jaded....when it comes to them. But that's a whole different topic!

Anyway, good luck and the young ones are surprisingly resilient when it comes to this stuff. :)

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If you want the school to take it seriously and it is a public school in the US, a 504 plan is a great way to go!  It is a blueprint of how to deal with things so everyone is on the same page!  It spells things out so there isn't any question about what needs to be done to keep them safe. Different people ask for different accommodations but some things that are often covered are:

 

-lunch room protocol 

-party issues

-birthday parties in the classroom

-art supplies 

 

These are just a few, as each kid is different and needs different things to keep them safe. Celiac IS covered as a hidden disability under the ADA.

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Thanks for the info Stephanie & Mommy!!   The kids are pretty receptive to the changes at home. They've had so many of the gluten free foods, that it's not foreign to them. Now there'll be less distinction of what is 'MOMMY'S'. Even though I've been watching for signs of celiac disease in all of my kids for years, it's a little rattling to actually get the positive diagnosis the first time. After all, they're my babies and now they have a disease!!  :o

I've seen 504 mentioned in other reading. That sounds kind of "official", so I'll look more into it while we await the results. In the meantime, I'll seek verbal cooperation from staff and teachers and see how we do! Even at home, we haven't tossed ALL the gluten. It sits in a cardboard box, outside of the kitchen. We prepare meals and snacks from food in the kitchen and pantry, cardboard box is last resort. The kids intake of gluten has been reduced dramatically with no ill attitudes!!  I know zero gluten is the only cure, but this seems best way to work kids AND HUSBAND into the changes!!                   

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Our new school is great.  200 students, one teacher is coeliac and they are very proactive.  The schools here don't tend to provide food and are very on top of watching out that kids don't share and avoid cross contamination.  They offer cooking this term and are using only certified gluten free ingredients (Orgran brand and the likes) to make sure it's absolutely gluten free.  Have a chat with the principal of the school and classroom teachers.  Good luck.

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My son (now 3rd grade) was diagnosed as a first grader.  We've had only positive experiences with both his schools.  I sent in a info sheet on Celiac Disease that included our "rules" for what he can eat.  He is EXTREMELY responsible about what he eats so I don't have to worry about him "cheating" or saying something is safe just so he can eat it.  After an incident at camp where the adult misunderstood the ingredients ("gluten" wasn't listed so she thought it was safe) our rules are:  Joe can eat anything brought from home and anything in a sealed package that clearly states "gluten free" on the label. Everything else requires permission from home (email, phone call, etc.)  

 

At lunch he uses a "wrap-n-mat" as a placemat in the school cafeteria.  We have 5 of them and send a clean one each day.  At the end of the week, I wash them all and we start over.  He sits with his friends and it has never been a problem.

 

I keep a plastic bin of treats and snacks at his school for classroom celebrations and birthday parties.  In the beginning, I kept two gluten-free cupcakes int he freezer of the teacher's lounge so he could have a cupcake when there was a party.  He recently told me he never really liked cupcakes anyway and would prefer m&ms . . . easier for me and he is happy.

 

I also keep a gluten-free lunch at his school (check out the shelf stable lunches from GoPicnic) in case he leaves his on the bus or something.  Once his water bottle leaked in his lunchbox and he didn't want to eat the food.  Luckily, he had enough food at school to put a lunch together.  You can get pouches of applesauce, shelf-stable hummus, crackers and peanut butter, etc.

 

We didn't do a 504 plan at first, but I am putting one together for this year.  It is a simple document that describes Celiac, outlines what he can/cannot eat, and some allowances the school needs to make to accommodate any issues.  Some examples:

 

Parent will be notified 24 hours in advance of any classroom activity involving food so that a safe alternative can be provided.

 

Activities involving wheat flour will not be conducted in the classroom (like papier mache or homemade modeling clay) 

 

Student will be allowed free access to the bathrooms whenever needed. (Joe has a "code word" to tell the teacher if there is an emergency)

 

Things like that.  If your school has an attendance policy, you can also address any celiac-related absences that might occur so your child is not penalized for them.

 

The document also describes your child's symptoms (in our case, the #1 symptom is behavior) so teachers can help be on the lookout (we have not had any accidental "glutenings" in quite a long while, but sometimes it takes days to show up . . . symptoms could start while your child is at school.)

 

The document is important to help inform the entire school staff of the issue.  Your classroom teacher might be great, but there might be different people in charge at lunch or recess (or art class) that would also need to be informed.  Also good for when there is a substitute.

 

 

Something I did NOT address in ours, but will be adding this week, is a "shelter-in-place" plan.  Your school should have one already, but most likely, the food available to the children should they need to stay at school for an extended period of time will not be gluten free.  The recent events in Atlanta has shown me that it is not that far-fetched and that Joe should have 48-72 hours of meals stored at the school in the event of an emergency situation where they need to shelter-in-place.  I'm just going to send in 6 more GoPicnic meals (Target sells them now) to add to his snack bin.

 

Having a 504 plan in place will also help protect your child against possibly bullying.  We have never experienced it, but I know several families with children who have been bullied by other kids due to their food allergies.  One even had a situation where kids were trying to "trick" their child into eating something unsafe.  (not celiac, but a nut allergy).  I would hope that this would never happen anywhere, but it does.  A 504 plan makes it easier for you to take action immediately.

 

Good luck to you.  It gets easier.  

 

Cara 

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We are a 504 family too.  Have one for elementary kid and working on one for preschool kid (preschool is within our school district).  Frankly, I needed them to appreciate that it's their responsibility to keep my kid safe all the hours they have her.  It's a legal, binding document and they take those seriously.  Plus, it's nice to know that substitutes will have to read through this and have an idea of what my kid needs.

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