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Grace'smom

When Teachers Don't Understand Celiac Kids

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Hello there friends

I am so sad tonight. It has been an emotionally draining few weeks. My 6 year old, Grace, was diagnosed with Celiac disease a little over two weeks ago. It has been a rollercoaster for all of us, much like it was for all of you in the early days, I'm sure. The hardest part for me is the sadness I am witnessing each time we have attended the all too frequent end of the school year parties, coupled with graduation parties and family barbeques. Each time we go to one of these events, I see this sad look come over my little girl's face as she examines the buffet table, laden with foods, and especially, with those tempting desserts. And yes, I come prepared with her own baked goods and even candy. But it's the social component she is struggling with...seeing her friends eagerly reaching for treats on the table that just weeks ago, she too reached for with enthusiasm. And now she feels left out. We have spoken at great length with her kindergarten teacher about the importance of knowing ahead of time when there will be a birthday party at school.(There were 7 in the last 2 wks!) We've also had meetings with her to explain the physical and emotional side of celiac disease. And yet, two days ago, knowing what she did about my daughter's situation, the teacher wheeled in an enormous cake for the class - without telling us ahead of time - and served a piece to every child in the class, except for my little girl. Three of the children were allowed to have ice cream, as they had been absent for a previous ice cream party. When Grace raised her hand and explained she couldn't eat the cake, and asked if she could have a small bowl of ice cream instead, the teacher said no, that there wasn't any left. And so she sat there, watching everyone enjoy a special treat, feeling left out. Last night, my daughter cried herself to sleep over having this disease. My heart aches for her too. When she awoke today to the last day of school, she cried and said she didn't want to go, and asked if she could sit with me at the school's end of year Catholic mass. At the church, I approached the teacher and explained how difficult the past few wks have been on her, and that she needed to be sitting with her mom this morning. And the teacher said, and I quote, "I know. She was crying when she came into school. But she should sit with the class. We can't give into this." Despite my explaining to her that a parent isn't "giving in" as if this were a tantrum, but is trying to make a tough situation easier, I was turned down. Case closed. I am heartsick that a kindergarten teacher could be so indifferent to a little one's needs on the heels of a major life change. I have set up a meeting with the school principal to request a specific first grade teacher for my daughter for next year, and to ask that my incoming kindergartner will have a teacher other than this one. I can't decide how much information I should share with him over what has transpired this week. Has anyone else experienced this kind of situation in school? I am so sorry for such a long post, I needed to get this anguish out of my heart! Thank you, Emily

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The social part is the hardest, and always is, IMO. I loathe pizza parties, sundae/ice cream parties, birthday parties, et. al.

My daughter was diagnosed at 9 and now she is 12. She can't even remember what an Oreo or hamburger bun tastes like. We live a life of planning ahead and avoidance. I find myself trying to out-do myself to make sure her stuff is just as good (if not better than everyone elses). There are always those that "don't get it" but you do get a few surprises along the way from those that do---or try really hard.

My daughter's science teacher had an end-of-year ice cream party in her class. She made sure everything, toppings and all, were gluten free so it was ridiculously easy for her to participate. It made my day, and my daughter's. It's those occasions when gluten is just a non-issue for everyone that are the most enjoyable.

It does get easier, but life definitely changes a WHOLE BUNCH. It sounds like all your concerns are normal and well founded.

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I'm not a parent, but I came across the message and wanted to reply anyway.

I'm 19 and I live with Celiac the worst part for me is what your daughter is going through right now. Being socially alone, every time my church holds a pizza party, cook-out, fellowship dinner or whatever I always have to bring my own food. And even though I know I can't eat the other foods it still hurts to watch everyone eat whatever they want. I can't even imagine how hard it would be for your little girl.

If I were you I would tell the Principal EXACTLY what happened between the so called teacher and your daughter. I wouldn't sugar-coat it (although I wouldn't dramatize it either...) he needs to know how his teachers are behaving and it sounds like your daughters teacher behaved poorly. A good support group at school is very important especially when your daughter is so young. And that teacher doesn't seem like much of an adult to me treating her like she did....

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I have heard of some schools that no longer allow birthday treats due to food intolerances. Not a bad idea considering gluten, dairy, soy, nuts and eggs are all common allergens.

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Not that I would wish celiac disease on anyone (I WOULD NOT), but if this particular teacher had a child w/ celiac disease... her attitude would be SOOO much different.

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I would tell the principal everything. Bringing a big cake in without telling you is bad enough, but not letting her have ice cream is beyond horrible. The school parties and events are so tough, there is always gluten everywhere. I was room mom in my celiac sons class this past year. Then I could make the parties gluten free as much as possible. Also next year make sure she has a box of treats on hand in the class - M&M's, Skittles, her favorites when the unexpected birthday pops up. Good luck, it will get easier!

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.

If I were you I would tell the Principal EXACTLY what happened between the so called teacher and your daughter. I wouldn't sugar-coat it (although I wouldn't dramatize it either...) he needs to know how his teachers are behaving and it sounds like your daughters teacher behaved poorly. A good support group at school is very important especially when your daughter is so young. And that teacher doesn't seem like much of an adult to me treating her like she did....

I agree. What she did was cruel.

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First, it will get much easier on your daughter. Now that it is summer she'll have 3 months to get adjusted, find foods she loves, and most importantly - heal. The healing part may help with the emotional part. Gluten does a number on the emotions of many Celiacs.

As to the principal - most definitely tell him what happened. The teacher was way out of line.

Now this next part may be hard to hear, but I think it's necessary - you have to be stronger, Mom. NEVER let a teacher, waiter, grandparent, whatever sway you from doing what you feel is right as a parent. You should have stood up to the teacher today and told her she was wrong and your daughter would be sitting with you or leaving for the day. ESPECIALLY at a private school (which I assume because there was mass). You pay the bills. Every parent is the leader in their child's education, but at a private school it should be easier than at a public school.

If you have a teacher you know will work next year, request her. If your request is denied, firmly tell the principal that you insist - but ask first. Especially if you've had a calm discussion with the principal about this year's teacher, he should have no trouble honoring your request.

Something I use with teachers when explaining the emotional side of being left out is this: I ask the teacher what their favorite food is. Then I tell them to imagine sitting in a room while everyone else in the room eats the food. Then I tell them to imagine that it isn't just for that one occasion. I say, "Now imagine what it would be like to sit there and watch everyone eat _________ and know that for the rest of your life, for the next 70 years, you will NEVER get to eat that food again." Then say, "Please, I know it can't happen 100% of the time, but if ever you know there is going to be a treat or food of any kind, please let me know and I will do my best to send in something similar for my daughter to eat." I usually go on to explain that yes, my son needed to learn that he can't eat like everyone else, but that he has learned that lesson and fully understands it and that we would like to minimize the pain that causes in his school life. Only a really nasty person would not be able to empathize with that explanation.

Now for practical matters - parties are going to happen without the teacher knowing or with the teacher forgetting. Start the year off by asking the teacher for a list of all the kids' birthdays. Then mark them on your calendar and be prepared to send your daughter with a treat each and every time. As the kids get older some kids won't bring in treats. You just explain to your daughter that the treat is ONLY to be eaten if the other kids get something. This will minimize the number of treats you don't know about.

Then, make up a treat box with your daughter of things that can be kept for awhile. These need to be her favorites. For my son we use Skittles, Reeese cups, Tiger's Milk bars (the gluten-free ones), prepackaged crispy rice marshmallow treats (that's gluten-free "Rice Krispie" treats), etc. Send in a few sizes - snack size, full size, life savers, etc. This way the teacher can have some flexibility in the snack - sometimes it's not appropriate for a full size candy bar (like if the class is just getting a small piece of candy).

If at all possible, offer to send in treats to be helpful to the teacher. I usually have a meeting with the teachers before school starts and then end it with an offer to send in popsicles the first week of school as a hot weather treat and tell them I'd be happy to do that sort of thing any time they feel the need to give a food reward to the whole class.

Lastly, a valuable thing we used with our son was the "wait and one up" trick. We told him right away that there would be times when mistakes would happen and he would be left without or with a sorry substitute. He knows we try really hard to avoid these, but they still do happen sometimes. For those times he knows that he need only wait until he hits our front door and then he'll get something way better than what he missed. Sometimes this means a trip to Wal-Mart for a toy or making cookies with Mom or pulling out a piece of frozen cake from the freezer. This really worked for us. I'm sure at times he's taken advantage of it a bit, but that's OK. A little overcompensation is fine.

Oh, and that frozen cake - if your daughter likes cake I HIGHLY recommend freezing individual pieces. They are very handy to pull out for birthday parties, school treats, etc.

Oh, and homemade donuts are fun to make, easy to make, freeze well, and make great special treats.

Truly don't despair too long. It stinks big time what she's had to go through, but it's over and now you can spend 3 months getting ready for the next year, learning the good things of this disease, and really getting used to the diet. You'll even be able to count all the blessings the disease brings to you. We do that when my son has had a bad Celiac day - count off the good things and compare them to the bad (only do this when you know there are some really great good things to count).

Good luck!!!

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My little sister's schools only celebrate birthday's once a month...You might be able to suggest this at your school? It's a great way to celebrate and it would help you out greatly :) Just a thought...

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As a parent, I wanted to know what the other kids couldn't eat. At Passover, I brought Popsicles. One kid with diabetes, I brought sugar free lemonade and cheese cut in fun shapes. My kids didn't have issues but there are always a few moms in every class that will look out for your kids if you let everyone know. Sure, some moms are absolute idiots and don't understand why the class party shouldn't have 3 kinds of cake.. These will be the same idiots that think that 16 year olds drinking at their house and sleeping over is a great, safe idea. Hopefully, your kids won't be friends at 16. I also found that the other kids usually want to help. The kid with diabetes mom didn't want anyone to know but the teacher. I knew because we were there when he was diagnosed (long story) . SO the 2 kids that knew, ran interference and made sure they brought a good snack.

Let her know that there are lots of us "girls" here with the same issues. If she has questions or wants to complain, help her on here. (let us know she's a kid so we watch our language). :)

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First, it will get much easier on your daughter. Now that it is summer she'll have 3 months to get adjusted, find foods she loves, and most importantly - heal. The healing part may help with the emotional part. Gluten does a number on the emotions of many Celiacs.

As to the principal - most definitely tell him what happened. The teacher was way out of line.

Now this next part may be hard to hear, but I think it's necessary - you have to be stronger, Mom. NEVER let a teacher, waiter, grandparent, whatever sway you from doing what you feel is right as a parent. You should have stood up to the teacher today and told her she was wrong and your daughter would be sitting with you or leaving for the day. ESPECIALLY at a private school (which I assume because there was mass). You pay the bills. Every parent is the leader in their child's education, but at a private school it should be easier than at a public school.

If you have a teacher you know will work next year, request her. If your request is denied, firmly tell the principal that you insist - but ask first. Especially if you've had a calm discussion with the principal about this year's teacher, he should have no trouble honoring your request.

Something I use with teachers when explaining the emotional side of being left out is this: I ask the teacher what their favorite food is. Then I tell them to imagine sitting in a room while everyone else in the room eats the food. Then I tell them to imagine that it isn't just for that one occasion. I say, "Now imagine what it would be like to sit there and watch everyone eat _________ and know that for the rest of your life, for the next 70 years, you will NEVER get to eat that food again." Then say, "Please, I know it can't happen 100% of the time, but if ever you know there is going to be a treat or food of any kind, please let me know and I will do my best to send in something similar for my daughter to eat." I usually go on to explain that yes, my son needed to learn that he can't eat like everyone else, but that he has learned that lesson and fully understands it and that we would like to minimize the pain that causes in his school life. Only a really nasty person would not be able to empathize with that explanation.

Now for practical matters - parties are going to happen without the teacher knowing or with the teacher forgetting. Start the year off by asking the teacher for a list of all the kids' birthdays. Then mark them on your calendar and be prepared to send your daughter with a treat each and every time. As the kids get older some kids won't bring in treats. You just explain to your daughter that the treat is ONLY to be eaten if the other kids get something. This will minimize the number of treats you don't know about.

Then, make up a treat box with your daughter of things that can be kept for awhile. These need to be her favorites. For my son we use Skittles, Reeese cups, Tiger's Milk bars (the gluten-free ones), prepackaged crispy rice marshmallow treats (that's gluten-free "Rice Krispie" treats), etc. Send in a few sizes - snack size, full size, life savers, etc. This way the teacher can have some flexibility in the snack - sometimes it's not appropriate for a full size candy bar (like if the class is just getting a small piece of candy).

If at all possible, offer to send in treats to be helpful to the teacher. I usually have a meeting with the teachers before school starts and then end it with an offer to send in popsicles the first week of school as a hot weather treat and tell them I'd be happy to do that sort of thing any time they feel the need to give a food reward to the whole class.

Lastly, a valuable thing we used with our son was the "wait and one up" trick. We told him right away that there would be times when mistakes would happen and he would be left without or with a sorry substitute. He knows we try really hard to avoid these, but they still do happen sometimes. For those times he knows that he need only wait until he hits our front door and then he'll get something way better than what he missed. Sometimes this means a trip to Wal-Mart for a toy or making cookies with Mom or pulling out a piece of frozen cake from the freezer. This really worked for us. I'm sure at times he's taken advantage of it a bit, but that's OK. A little overcompensation is fine.

Oh, and that frozen cake - if your daughter likes cake I HIGHLY recommend freezing individual pieces. They are very handy to pull out for birthday parties, school treats, etc.

Oh, and homemade donuts are fun to make, easy to make, freeze well, and make great special treats.

Truly don't despair too long. It stinks big time what she's had to go through, but it's over and now you can spend 3 months getting ready for the next year, learning the good things of this disease, and really getting used to the diet. You'll even be able to count all the blessings the disease brings to you. We do that when my son has had a bad Celiac day - count off the good things and compare them to the bad (only do this when you know there are some really great good things to count).

Good luck!!!

So much good advice and wisdom in your words...thank you for sharing your experiences with me. I really love the idea of the "one up" whenever an unexpected event happened that had your child feeling left out. I will tell Grace about that one. Tonight we made plans to go to the zoo this week, to lift her spirits after a rough few days. Little things like that tend to work. Also, humor. Last night, when she was crying like her heart was breaking, I made up a story for her and included some complete idiocy into the story so that she was, at one point, laughing so hard that she forgot all about what had made her cry in the first place. Its so nice to have other moms and dads to share with on this board...what a godsend. Thank you, thank you, thank you. And big hugs.

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Oh, and it will get easier on you too!! I haven't cried in a grocery store in close to 2 years and I haven't cried about pizza in very long time! :) The nice thing about our kids being diagnosed so young is that they will grow up only knowing about life as a Celiac. I think is would be much harder the older you are. And a huge thing is we can teach them how to cook! They so need to know how to do that!

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As a teacher my self, special education, I cannot imagine treating a child that way. I deal with a lot of different types of food intolerances, so every day each child brings there own snack and certain things are not allowed in the room. On birthday, a child can bring in a special treat, but it has to be healthy. There are still issues sometime, but I try to keep Gluten-free Casein-free snacks available at all times. I buy a box of brownies at the health food store and keep in my room for special school wide celebrations. I do not expect all teachers to go to this extent, but I do expect every teacher to understand.

Hopefully your daughters teacher next year will be much more understanding. Someone else said explain it as if the teacher was loosing their favorite food, I might suggest comparing celiac to something the teacher might be more familiar with such as diabetes. It also doesn't hurt to ask the teacher if they would like further information. Most teachers truly want what is best for a child and will be happy to help you. I might also suggest talking to the school nurse.

By all means tell the principal about your experience. You don't want the same thing to happen to another child. Even if there was not enough ice cream to give to everyone, the teacher could explain to the other children why your daughter was getting ice cream again.

Good luck. The social part remains an issue for a very long time, but it will get easier for her and she will learn ways to get around the discomfort. My 6 year old son was diagnosed last week, but because we have many friends with restricted diets, I chair and autism support group, he understands that he has to eat differently now. We have not had to deal with the public part yet however. Forth of July at my in-laws with all the cousins is going to be the hardest.

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My heart is just breaking for your little girl. I can't believe there are teachers out there actually like that!

We have been incredibly lucky so far...we had one teacher who really did not get it, and that was a rough year. However, the past two years we have had relatively young teachers, who had a much greater awareness of allergies and have been amazing. My son was in the first "allergen safe" classroom last fall...all the food allergy kids were in one class. It was heaven for me, I made friends with other special diet moms, and it was great for the kids b/c they didn't feel different at all :D

I hope you have better luck next year, hopefully you just got the one bad apple of the bunch! We too send in a big bag at the beginning of the year full of safe candy and treats. It's been a lifesaver on those days I can't get a cupcake made, or if the teacher forgets to tell me about a party.

I promise it gets much easier as time goes by...it's great you have the summer to adjust and get prepared for the next school year. I have found the younger grades to be the hardest, b/c so much revolves around food. My older son will be in 6th grade next year, and there are much less food issues to deal with. Take care, and welcome to the board!!

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Grace's Mom,

Big hugs to your daughter ... I just about cried reading your post! My oldest son was 7 when he was diagnosed and the first months were the hardest. The end of the year is extra tough with all of the parties and summer birthdays they celebrate. It's so disappointing that your daughter's teacher handled the cake situation like that! I would absolutely tell the principal exactly how you feel and what happened ... hopefully they can pair her with a more compassionate teacher next year!!!

One thing we did when my son was newly diagnosed was to host a party ... a 100 % gluten free party where he could have every item on every table. We had chips, guac, and salsa, made tacos, gluten-free brownies and ice cream for dessert. I think that helped a lot and we try very hard whenever we have people over to make sure he can have 90% of what is offered. We do have a gluten-free house now (except some of my husband's breads and cereal) which has helped a lot, but that's also because we now have 4 out of 5 family members eating gluten free!!

I am so sorry that your daughter is going through such a tough time. It sounds like you're working hard to help her have her own treats / foods when you're out!! It will get better!!

Margaret

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We had a really hard time this year with the teacher. I wrote about it a couple times. You can look in the teenagers and your adults section for more details (under privacy and your feelings about it and under baking, teachers and school). The clinical social worker with the GI dept. at Childrens Hospital was really helpful in showing me how to advocate. She also worked with my daughter to help her understand that her teacher was really inappropriate. The social worker told me to expect a learning curve with schools and that our experience unfortunately wasn't too uncommon. It was really awful to have to deal with a really insensitive teacher on top of it being a new diagnosis. In our case it seemed the teacher was simply incapable of understanding it or what she was doing which made it really hard to fix. It's a really hard thing because you need your child to respect her teacher, but at the same time if the teacher is acting badly about this you also have to explain that too. Hopefully you are almost out for the summer?

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Gosh, your post nearly made me cry too!

We had very good teacher experiences. When my son was first diagnosed (mid-term 5th grade) I sent a long e-mail to the teacher explaining things, and copied the principal, asst. principal, coach, and school nurse. Our kids go to Catholic schools also. I explained also that DS was having difficulty adjusting and did not want a widespread announcement yet - he would tell people at his own pace. The school respected that, but he ended up telling a couple close friends the first day, and then his whole class within the first week.

The same day I sent the first email, his teacher called me at home in the evening to ask some questions, and ask how she could help. We talked for 45 minutes! She was very concerned about handling parties, etc and keeping me informed so I could provide equivalent treats as needed. Her specialty was science, and she even thought to ask about materials they might use in experiments.

After a couple of weeks, I told the teacher that he was coming to terms with the Celiac, and to feel free to tell anyone who asked - kids, teachers, parents.

Before the year was over, 3 different parents called me in advance of sending birthday treats for their kids to ask if what they planned was gluten-free, or what else they could send that was gluten-free, or if THEY could provide an alternative for him that he liked.

I saved my email to the teacher, and every year about a week before school started, I would revise the email as appropriate and send to his new teacher. I always got a lengthy email response or personal phone call.

Had I not gotten such wonderful teacher support, I would most certainly have gone to the principal. This is a big deal, especially for a younger child, but for anyone of any age.

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I agree. What she did was cruel.

ditto

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Gosh, your post nearly made me cry too!

We had very good teacher experiences. When my son was first diagnosed (mid-term 5th grade) I sent a long e-mail to the teacher explaining things, and copied the principal, asst. principal, coach, and school nurse. Our kids go to Catholic schools also. I explained also that DS was having difficulty adjusting and did not want a widespread announcement yet - he would tell people at his own pace. The school respected that, but he ended up telling a couple close friends the first day, and then his whole class within the first week.

The same day I sent the first email, his teacher called me at home in the evening to ask some questions, and ask how she could help. We talked for 45 minutes! She was very concerned about handling parties, etc and keeping me informed so I could provide equivalent treats as needed. Her specialty was science, and she even thought to ask about materials they might use in experiments.

After a couple of weeks, I told the teacher that he was coming to terms with the Celiac, and to feel free to tell anyone who asked - kids, teachers, parents.

Before the year was over, 3 different parents called me in advance of sending birthday treats for their kids to ask if what they planned was gluten-free, or what else they could send that was gluten-free, or if THEY could provide an alternative for him that he liked.

I saved my email to the teacher, and every year about a week before school started, I would revise the email as appropriate and send to his new teacher. I always got a lengthy email response or personal phone call.

Had I not gotten such wonderful teacher support, I would most certainly have gone to the principal. This is a big deal, especially for a younger child, but for anyone of any age.

Hi Bev

I think you and I have communicated before. Thanks for your post. The kindness of the teacher and the other parents in your classroom brought mega tears to my eyes. Its good to hear there are such good hearted and understanding adults out there. I am praying that this coming school year will be different. I am speaking with the principal of the school on Monday, not to report on the kindergarten teacher, but primarily to explain the disease and request a particularly compassionate first grade teacher, who also has diabetes and will be understanding of my daughter's situation. I am also requesting that my incoming kindergartner go into the "other" k class, and not the one my little girl was in this year. So grateful for this board and so much support and caring from other parents. What a blessing. Hugs, Emily

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Hi Bev

I think you and I have communicated before. Thanks for your post. The kindness of the teacher and the other parents in your classroom brought mega tears to my eyes. Its good to hear there are such good hearted and understanding adults out there. I am praying that this coming school year will be different. I am speaking with the principal of the school on Monday, not to report on the kindergarten teacher, but primarily to explain the disease and request a particularly compassionate first grade teacher, who also has diabetes and will be understanding of my daughter's situation. I am also requesting that my incoming kindergartner go into the "other" k class, and not the one my little girl was in this year. So grateful for this board and so much support and caring from other parents. What a blessing. Hugs, Emily

Emily,

Yes - as I have commented already, I think you are doing all the right things, it's just that you are very early on this path that some of us have been dealing with for quite awhile. Knowledge is king - many adults (including me in the very beginning) have no clue about how far gluten extends, and also how social food is. You tell people you can't have wheat/gluten and they think - oh well, you can't eat bread - they might not think of pasta, donuts, pizza, and even if they do, they certainly don't think of soy sauce, seasonings, crumbs from a deep fryer, or flour particles imbedded in a pan or floating around a kitchen. So explaining should go a long way in getting some understanding from the school.

Keep doing the things you are doing - you are obviously a smart and caring mom. Your daughter is lucky to have you.

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Emily,

Yes - as I have commented already, I think you are doing all the right things, it's just that you are very early on this path that some of us have been dealing with for quite awhile. Knowledge is king - many adults (including me in the very beginning) have no clue about how far gluten extends, and also how social food is. You tell people you can't have wheat/gluten and they think - oh well, you can't eat bread - they might not think of pasta, donuts, pizza, and even if they do, they certainly don't think of soy sauce, seasonings, crumbs from a deep fryer, or flour particles imbedded in a pan or floating around a kitchen. So explaining should go a long way in getting some understanding from the school.

Keep doing the things you are doing - you are obviously a smart and caring mom. Your daughter is lucky to have you.

You're right. Most people have NO idea how far reaching the diet extends. I certainly didn't, until now. The food starch w/flour bit is the killer...its hidden in so many foods that one would never expect; if they knew the extent of our label reading it would boggle their minds. Thank you for your kind words at the end of your post. Seems like all of the parents on this board are wonderfully caring moms and dads. Take care! E

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Coming into this late, but I just wanted to say that I htink you need to be really honest w/ the principal. I know the point of your meeting isnt' this teacher, but I think the principal needs to know. Because I agree- I think what she did was truly CRUEL.

Good luck.

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First let me say that the diet gets easier for the family and your daughter and grieving is normal. My oldest grieves at the beginning of everyschool year and then we are fine. I think explaining why she is different is the problem. My children were diagnosed much younger. I have a very different perspective since we have anaphylactic food and medicine allergies, celiac, severe dairy intolerances/allergies, and a new one we are trying to sort out now.

I've found even my very young kids can understand their own diseases pretty well. they have a lot of control in their allergy/ celiac. If they want something that is not safe we find a way to make it. We discuss the "allergies" on a regular basis. I agree with them that it does suck to not be normal like everyone else. But this is how we were made. I can't change it and neither can they. In the event a medication or cure is found, we will try everything we can per dr approval. Until then we stick to our diets.

Figure out what your daughter misses the most right now. Then look to this site for good recipes and ideas for substitutes. I'll gladly help. My kids love making candy. We find any excuse to melt chocolate. We love EnjoyLife brand ( gluten-free/cf and nut free)

Ifshe is in Brownies, she can earn an allergy patch. Look for it on FAAN. (food allergy and anaphylaxis network) they have good ideas for schools and camps but it's geared toward allergy rather than celiac. It still helps.

Regarding school. I have spent years working with teachers, talking, teaching them about the diets, being present for parties, etc. It hasn't worked well. I wouldn't recommend that approach to you. This past year I finally started documenting the problems and scheduling meetings with the principals. I am pursuing 504s for the kids. What I have found is that the schools have a very general concept of the day to day details of living with celiac. So buy books and slowly educate the principals about your daughters new condition and how it will impact her life at school. Areas of concern. Art supplies? Food based learning drives me crazy! Lunch room. Treats and food rewards handed out by all of the specials teachers. Then come the reward parties for good citizen, reading enough, etc. I am optimistic that next year will be better.

For your daughters classroom next year, bring in a safe snack box. Explain to the teacher that your daughter needs access to these snacks anytime food is being used or eaten in the classroom. Explain to your daughter that her job is to tell you everytime she uses something from the box and everytime she is not allowed to get to herbox. If necessary, leave a stash of candy in her lunch box and in her book bag. She'll love it.

For next year find out which teacher at the school handles the food allergies for your daughters grade. Look to local support groups for help. We found having a kid with any allergies will help your daughter adjust.

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As an educator, that teacher's response to your daughter was horrible! How in the world can she live w/ her conscience and how did she get to be a KG teacher??? It takes a special person to work with little ones.

It is hard knowing your child has to deal with other people and their insensitivities. My daughter was diagnosed last year at the age of 13 and she is much better able to rationalize and deal with the situation than your daughter but we still have situations arise because at her age slumber parties are a big thing. Pizza for dinner, donuts for breakfast. I encourage her to take food but most times she refuses, doesn't want to be "different."Some of her friends have been wonderful, calling and asking her what she can have and trying to provide things for her. In middle school there are so many teachers it isn't possible to inform everyone so there are parties we don't know about where she can't eat anything. We got some great cookbooks and make totally indulgent desserts and such to make up for for she's missing.

I got diagnosed after she did and while it does make things more difficult in some ways, I am glad she has someone to share this disease with.

Hugs to your little one. Hope you get the other teacher next year. Whenever I have students with dietary restrictions, I go out of my way to have treats they can eat..... I would never want them to feel left out!

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Better late than never to reply!

I just had a good cry reading your post,i feel for your daughter,it's so hard as a child to be excluded from anything,let alone anything as fun as party food!

My daughter is just 19mths old and was diagnosed 6 months ago aged just 13mths.She was due to attend the childcare centre my son attends,but when she was diagnosed i had a meeting with them and they told me they could not take her as the changes we were requesting were to hard(gluten free playdough!!).Thankfully she is to young to know she was being exculded,but i was heartbroken all i want is for her to do the same things as her big brother did.Reading your post made me relise this won't be the last time she will be excluded because of her Celiac.

As parents of children with Celiac we need to stand up for them and make them feel as included as posible by giving them special treats.We can't help but be a bit overprotective of them but we need to be strong for them.

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    Roxanne Bracknell
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    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
    • Yeah their shreds raw are nasty but melted in recipes they are decent, they make 2 different shreds a cutting board super stretchy version and a plain, they also sell that mac and cheese sauce by itself for use in other recipes. https://store.veganessentials.com/daiya-deluxe-cheeze-sauces-p5079.aspx The company makes a decent cream cheese and cheese cake also if you can stomach the xantham gum.

      I am going to copy and paste something from another thread thread and link you a list of alternatives. " Violife...makes vegan Feta...I have been dying to try their cheeses and hear good reviews. They also make other cheeses.
      https://store.veganessentials.com/just-like-feta-by-violife-p5342.aspx
      Kite Hill makes great Ricotta, the truffle cheese from them....yeah you will eat the whole thing in one sitting stuff is addictive,  decent cream cheese if you can stomach xantham gum (only one they have that has it).
      
      Miyoko Creamery makes great mozzarella and even a smoked version I hear they make great cream cheese and wheels also but I have not gotten any. Leaf Cuisines makes the best smoked gouda, and a strong garlic and herb cheese

      Tree line Scallion is glorious, and their garlic and herb is milder then Leaf cuisines but decent flavor...the peppered is meh.

      Daiya Blocks flavor wise are better then the shreds, the jalapeno Havarti is one my my dads favorites and he loves their cheddar...again xantham gum so not for me. Their cream cheese is decent but noticeable artificial. Their shreds come in 2 formulations a high melt version (cutting block) and standard I they taste better cooked into recieps over raw.
      Daiya recently started offering cheese sauces...like the stuff they used to sell with their mac&cheese but just the sauce.

      Lissanatti makes the best "raw" shreds for cheddar and mozz.

      Parma makes great Parmesan sub...the better then bacon one is SUPER addicting.

      I heard good reviews on so delicious cheese....but corn makes makes me not even able to do a chew and spit taste without an allergic reaction.

      I recently found a creamery you can contact about getting cheeses...I found their sauce on a site and got it.....great Alfredo sauce.
      http://www.parmelacreamery.com/
      https://www.luckyvitamin.com/m-28232-parmela-creamery
        Dairy Free cheese products  NOTE CHECK FOR GLUTEN FREE ON THEM
      https://store.veganessentials.com/cheese-alternatives-c6.aspx

      Other gluten free options for everything else  
    • Dairy is dairy on a elimination diet, your trying to void all the proteins, lactose, whey, casein, and the enzymes, hormones, pus, etc that could be setting off issues. I would even say wait at first on the dairy free alts. IF anything go with the fewest ingredients ones without starches or gums like the plain kite hills, tree line, leaf cuisines and miyoko. And completely sideline the crazy ones like daiya, or the blends of more then 2-4 ingredients.
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