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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.

The Kindness Of Others...
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13 posts in this topic

i would love to hear some thoughts on how you handle the kindness of other people when preparing food.  my daughter just started kindergarten and we are getting use the possible contamination sources.  this week was the first (of so many) birthday parties.  i was able to find out what the snack was going to be and make a gluten-free version for her.  when we arrived at school that day the mom had made gluten-free for the whole class.  she even brought the packaging in so i could read what went into them.  it was so thoughtful and my daughter was thrilled to be able to eat right off the tray with her friends.  as i walked away it all sunk in... the cross contamination of her kitchen was now in the lovely treats my daughter was enjoying.  ugh! i enjoyed the few seconds of knowing my daughter was included but then i spent all day wondering how i deal with this going forward.

 

so it is worse to have the whole class enjoying a gluten-free snack with the strong possibility of CC for my daughter or is it worse to have all the kids running around her classroom with cookies, cakes, or other treats that will leave crumbs all over the place. 

 

do i send a note to the parents of our class and just let them know "thanks but no thanks" for all the kindness?  we are lucky to be part of an amazing school and group of families so i feel like we can be clear on what works for her.  i don't want to offend anyone but i need to make sure she is as safe as she can be.

 

thoughts?  i am so new to both school and celiac and it makes me a little crazy ;)

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I don't know how to handle this either, so I am looking forward to the replies.

 

It's heartwarming that the mom cared enough to attempt to do all the gluten free stuff (some of that can be super intimidating if you don't cook/bake normally and sometimes, even if you do!) but heartbreaking at the same time due to all the cross contamination worries. :(

 

I wish there was an easy answer.

 

Maybe a note to the parents explaining the cross contamination issues.....and if they are inclined in the future to make an attempt at gluten free that would be best if it were something that is already packaged. But then again....there are issues with that too! Argh! Maybe suggest fruits and veggies?

Goodness, this can be so frustrating! I am not looking forward to the first birthday treat at school.

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Maybe give the teacher a hand out of guidelines to give to parents.  By guidelines I mean an explanation of the disease and cross contamination issues involved with home made treats and to assert that you will prepare a comparable treat for you child.

 

I would also thank the specific parent for their effort and explain that you are learning more about contamination issues and how they brought an issue to your attention.  For that, I'm sure you are grateful. 

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Have you considered asking for non food birthday snacks for the class? This is actually a school wide policy at our school. 

 

Also, any communication is best to come from the school/nurse. Parents will talk so if it comes from the school, it's best!  Have you considered a 504 plan? 

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I also have this problem with my daughter (11) who was just diagnosed in April. Her friends and their parents have been fantastic in terms of going overboard to provide gluten-free treats for her. And then it is SO awkward to bring up possible CC issues. They are just trying to be nice! Recently she was doing a sleepover with a friend and I called the mom to talk about food and she had it all planned that they were going to order "gluten-free" pizza from a local pizza parlor. So kind, yet so scary. I told her that I would call the restaurant to inquire about their procedures to avoid CC, and of course they didn't have any. So I sent along a frozen UDI's pizza and asked her to cook that for my daughter. I just know the eyes were rolling......

 

Another party was at her friend's house whose mother is my internist! They had ordered a GORGEOUS totally gluten-free cake from a local lady who decorates cakes. What could I say???? I did ask them to cook her burger on foil, and the mom (my doctor) got it, but I just let the cake go. So far my daughter doesn't seem very sensitive, but of course we don't know if we could be doing silent damage. I'm really looking forward to one more month when we will run 6 month labs and see how we're doing. I've told my daughter that if her numbers aren't spectacular by then (they were very high) then we will have to get "crazy" and there will be no more gluten-free cupcakes at friends houses, no matter how kind and thoughtful it was of them to make it for her!

 

I think this is the single hardest part of managing this disease with an older child - especially given the current fad which leads everyone to think they know what a gluten-free diet is all about.

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thank you for all your input!  your feedback was very thoughtful and will help me as i approach the teacher (and the amazingly thoughtful parent) with this topic.  i am always the person that will suffer in someway instead of make someone else feel bad.  i am learning how to tackle these issues with class ;)

 

i haven't looked into doing a 504 plan and i know little about them.  we are at a private school and she will not be eating hot lunch.  so far the teachers and staff have gone above and beyond for us.  i did a write up about celiac and the possible sources of gluten that she may come in contact with.  BUT i am new to all of this.  can anyone tell me a little more about the reasons we would need a 504 plan?

 

blmoreschi:

were you ok with the family cooking her pizza on a pan they already had?  we are a ways off from sleepovers (thankfully) but it was just something i wondered as i read your post.

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If it's a private school that doesn't receive ANY public funding (ie religious schools mostly) then an IHP may be more what you would need over a 504. A 504 is a part of the ADA that covers Celiac disease.  An IHP or health plan is often substituted in a religious school. 

 

If the school is being really great about it I would talk to the about perhaps implementing an no food treat birthday rule.  Perhaps for you DD's class this year and perhaps school wide next year. This has SO many benefits for everyone really. Kids with Celiac, diabetes, food allergies not to mention the childhood obesity epidemic.  Our school does this and we can send in pencils or donate a book to the class library.  

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thank you for all your input!  your feedback was very thoughtful and will help me as i approach the teacher (and the amazingly thoughtful parent) with this topic.  i am always the person that will suffer in someway instead of make someone else feel bad.  i am learning how to tackle these issues with class ;)

 

i haven't looked into doing a 504 plan and i know little about them.  we are at a private school and she will not be eating hot lunch.  so far the teachers and staff have gone above and beyond for us.  i did a write up about celiac and the possible sources of gluten that she may come in contact with.  BUT i am new to all of this.  can anyone tell me a little more about the reasons we would need a 504 plan?

 

blmoreschi:

were you ok with the family cooking her pizza on a pan they already had?  we are a ways off from sleepovers (thankfully) but it was just something i wondered as i read your post.

I tried to be funny/polite about it. In my e-mail about it, I said "unless your oven racks are a lot cleaner than mine, please cook the pizza on a foil covered pan". I asked my daughter the next day, and she didn't think she used foil. I know that other moms would follow my instructions to the letter, but I'm not surprised that this mom thought she knew better than me. :( As I think I said earlier, since my daughter doesn't seem very sensitive we are going to wait until after her follow-up blood work at 6 months (October) to see if we are doing "good enough". Our peds GI said "don't let the perfect get in the way of the good", and that is a mantra that my husband is continually quoting back to me. It's hard to know how to balance cautious and crazy with a kid who doesn't outwardly react.  For the sleepover I also sent a box of Rice Chex for breakfast and my daughter ate bacon that they cooked. She checked and it was Oscar Mayer and she knew that was okay and she said "I looked at the pan and it was clean". She will make sure she can eat it when bacon is involved! :) For a few other sleepovers, I've made sure to send a big bag of Angie's Kettle Corn which all of her friends love and we know is certified gluten-free. Another time we made a batch of Muddy Buddies with Rice Chex.  I don't think I ever realized how many sleepovers 11 year old girls have!

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And how about this....(my daughter is 11 years old and like blmoreschi, was diagnosed in April).....when your Celiac child is sitting at a table with others who are eating cookies and other snacks that are not gluten free -- and then these same children reach into your child's bowl/bag of gluten-free chips.....

 

It seems to me (and I'm still very new at this) that when someone who's eating cookies sticks their hand into a bowl of gluten-free chips, they are likely to get some gluten crumbs into the gluten-free bowl/bag.

 

What do you think?

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And how about this....(my daughter is 11 years old and like blmoreschi, was diagnosed in April).....when your Celiac child is sitting at a table with others who are eating cookies and other snacks that are not gluten free -- and then these same children reach into your child's bowl/bag of gluten-free chips.....

 

It seems to me (and I'm still very new at this) that when someone who's eating cookies sticks their hand into a bowl of gluten-free chips, they are likely to get some gluten crumbs into the gluten-free bowl/bag.

 

What do you think?

That absolutely would be an issue.  We teach sharing is nice but not with food in either direction. My child would throw that out.

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And how about this....(my daughter is 11 years old and like blmoreschi, was diagnosed in April).....when your Celiac child is sitting at a table with others who are eating cookies and other snacks that are not gluten free -- and then these same children reach into your child's bowl/bag of gluten-free chips.....

 

It seems to me (and I'm still very new at this) that when someone who's eating cookies sticks their hand into a bowl of gluten-free chips, they are likely to get some gluten crumbs into the gluten-free bowl/bag.

 

What do you think?

yep. That would be a way to cc it.

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I sent in a letter letting other parents know that the best way to include Joe is to just send me an email and let me know what they are planning on bringing in so I can prepare a safe alternative for him.  I let them know that simply avoiding gluten ingredients in a recipe is not enough and that his food must be prepared in a gluten free kitchen.   There was one other child in his class that had Celiac . . . we would eat the treats from their home.  (I knew the mom and knew their kitchen was gluten free.)

 

I remember being "that mom", trying to make things for everyone.  Now I get it.  I don't want anyone to go to the trouble and expense of trying to make something for him since he won't be able to eat it.

 

I would always keep gluten-free cupcakes (frozen from Whole Foods) in the freezer in the teacher's lounge.  Worked great until one day he confessed that he never really liked cupcakes in the first place and if he was going to have something different, could it be a treat like skittles or a snickers?  I was thrilled!  He's happy, I'm happy, no more expensive cupcakes to keep stocked.  I should have just asked him in the first place instead of trying to match the treat exactly.

 

Cara

 

 

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I would always keep gluten-free cupcakes (frozen from Whole Foods) in the freezer in the teacher's lounge.  Worked great until one day he confessed that he never really liked cupcakes in the first place and if he was going to have something different, could it be a treat like skittles or a snickers?  I was thrilled!  He's happy, I'm happy, no more expensive cupcakes to keep stocked.  I should have just asked him in the first place instead of trying to match the treat exactly.

 

Cara

Yeah, great as long as there isn't a nut allergy in the class ;)

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