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lovenhappiness

Brain Damage At School!

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We are new to this and my 9yr old has been recently diagnosed - (my 7yr old and myself most likely have it too). I have sent emails to my childs school and I have talked to her teacher personally. Tonight she was very sick and when I asked her if she ate anything but the food I have sent she told me that her teacher gave her some pretzels! I had just spoken with her teacher today again about this! I am so frustrated - I sent a long email with links and begged her teacher(s) to help me protect my child. I can't bear to see her sick anymore especially now that I know I just have to keep her gluton free and she will be better. Does anyone have any suggestions on what else I can do to keep my children safe at school? Also - anyone have any creative lunch ideas?

I have a great corn-taquito-dog dinner recipe if anyone is interested.

Thank you :)

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Get a doctors note to give to the school.

Talk to the principal, nurse, teacher, all at once in a conference.

Educate them. If they don't know then they are not much help.

Stay calm, but assertive. Mistakes will be made at first.

Ask for a 504 plan. Then you will have all the "special exceptions" documented. Examples are: special bathroom usage, gluten-free snacks kept at school, any special arrangements that would benefit your child.

Good luck!


Whole family is allergic to Gluten, eggs, dairy, most are allergic to garlic. Few other various allergies.

Did you know it's best to wait until 21 months to give a baby wheat??

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OMG, I would have such a difficult time controlling my palpitations the next I saw that teacher!!! There is NO excuse for such rampant stupidity. I would approach her directly and tell her that she is not to give your child any foods that are not provided by you unless she has expressly obtained your permission...for each individual item. I would then reinforce this in writing and send a copy to the school nurse, the administrator/principal, and everyone else who has an authority position over your dd in that school. And then you also need to talk to your dd about not taking food from ANYONE unless she knows it is safe. She needs to ask her teachers to read the ingredient lists OUT LOUD. And if there's a doubt, tell her to have the teacher call you with questions on ingredients. And then you can ask the teacher why you're having this conversation as you've made it perfectly clear she was not to feed your dd foods that weren't from home! ;) Read ingredients with your dd as well so that you can both familiarize yourselves with safe vs. unsafe ingredients. Heck, I do this with my 4 year old and she's pretty darn good at spotting the allergens....and we avoid gluten, dairy, soy and eggs!

Also, check out the School - I need to vent thread on this board. There is some great information on how to obtain a 504 plan to better protect your dd. After reading your experience, I think it would better serve you to get that plan in place now as opposed to waiting until it gets really bad. Once you have that, there will be no more excuses for anyone on the staff giving your dd gluten. You can also specify in the plan that you want your dd to have free access to restrooms, perhaps a seat by the door (less disruptive if she has to leave due to being glutened), free access to a restroom/wash area to immediately wash her hands after touching chalk at the blackboard (or other gluteny product in class), and I believe that you can even request tests be delayed in the event of her getting glutened. And if the school soap isn't gluten-free, a 504 can require that at least one restroom have gluten-free soap for your dd to use.

I know that you want to be as reasonable and nice as possible in all of this. But it is imperative that you document EVERYTHING and have a formal meeting with the teacher, the principal, you and one other parent (to serve as your witness).

Now....as far as lunch ideas go, if you truly want some creativity, check out bento lunches. The last link is in Japanese, but the pictures (click on the month....written in English) are just incredible as well as inspiring. Plus, it deals with simple foods...they're just presented in a beautiful way.

http://www.flickr.com/photos/90821652@N00/...with/488403984/

http://veganlunchbox.blogspot.com/

http://www.cookingcute.com/

http://www.e-obento.com/main-Frame-set.htm

http://community.livejournal.com/bentolunch

For other lunch ideas, feel free to PM me. I've got several working lists specifically geared towards school lunches. I'm almost afraid to look, but I think I may have a month-long school menu done (you know...for my 4 year old who isn't even in kindergarten yet! :lol::lol: This food issue has really finely honed my list-making capabilities! I scare myself at times :rolleyes: )

Well, I will wish you good luck and let the rest of the cavalry come in.

We are new to this and my 9yr old has been recently diagnosed - (my 7yr old and myself most likely have it too). I have sent emails to my childs school and I have talked to her teacher personally. Tonight she was very sick and when I asked her if she ate anything but the food I have sent she told me that her teacher gave her some pretzels! I had just spoken with her teacher today again about this! I am so frustrated - I sent a long email with links and begged her teacher(s) to help me protect my child. I can't bear to see her sick anymore especially now that I know I just have to keep her gluton free and she will be better. Does anyone have any suggestions on what else I can do to keep my children safe at school? Also - anyone have any creative lunch ideas?

I have a great corn-taquito-dog dinner recipe if anyone is interested.

Thank you :)


Vicky

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I know that you want to be as reasonable and nice as possible in all of this. But it is imperative that you document EVERYTHING and have a formal meeting with the teacher, the principal, you and one other parent (to serve as your witness).

Sorry, I have to agree.

The bottom line here is that the teacher deliberately ignored you...

She really needs a good kick up the ass but I think you will have to make do with the meeting and take a witness.

This is likely to happen one more time ... the teacher sounds like one of those "I know better" types so I doubt you can change their mind so instead you need to scare them ... (in other words this teacher needs treating like a child since they obviously cannot be trusted to act like a responsible adult)


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I agree with all of the posters above. But also make sure your daughter has a firm understanding of everything she can't eat so that the next time someone does something stupid like this, she will know to say she can't eat that. I know it is hard with kids, my son was so much better at sticking to his diet when he was 4 than he is now at 7. Make sure when you go to the school about this you speak to principal and the nurse. You know, some people are just really ignorant. We took my son out to dinner and my husband asked the server if there was any wheat in the shrimp. He said, "no, that is just flour". So maybe for some rediculous reason the teacher didn't realize what she was doing. I am not defending her, just trying to think of a reason why she would deliberately feed a child something bad for them.

Nicole

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Agreed with all of the above . . .

However, I suggest you provide a bag of safe snacks for the teacher to keep in her cabinet/desk. If she is handing out snacks to the rest of the class, your daughter should be able to have something too and if you have provided it ahead of time, then you know it will be safe. You don't need a 504 to be able to do this, just an agreeable teacher.


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

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Be very clear if you use "look alikes" too. I've had people assume that since my kid was eating a pretzel (for example) that all pretzels were ok. I have to make it very clear that we have look alikes and I will even call them by different names or qualify them by saying "gluten free" before or whatever it takes so people know they are not eating the "familiar" brand.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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You can click on the link on my profile to see what we do for lunch(bento).


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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Thank you so much everyone for your support!! I am going to go to the school today and arrange a meeting in person. I also printed up some brochures I found links for on the other threads for the teachers at school. I was so frustrated that I couldn't go to bed last night with out sending the teacher a email - here is what I sent...

Tonight Esa is sick - stomach pain, leg cramps, headache - when I asked her if she ate anything that I did not send with her to school she said that a teacher gave her pretzels today. (pretzels have wheat in them) Please talk to other teachers and let them know that Esa can have zero wheat and if they are not sure it's better for her to go with out - or give me a call at home - 817. I will go to the school tomorrow to talk to the school nurse and find out if there is anything else I can do to make this easier on everyone. We are new to this as well and need help - but I thank God that after 2 years of pain and doctor visits, and even since she was little other minor symptoms, we finally have an answer. This is a life long auto immune disease of the small intestine. I know that this does not carry the same immediate consequences as a nut or bee allergy that can send a child into anaphylactic shock, but the pain and long term consequences are terrible, and every time she eats wheat her intestine gets a little bit worse - it permanently damages the intestine and can lead to severe consequences - learning, growth, even death. I really need everyone's help in this and we must be diligent as I can not bear to see my child in any more pain - especially when all we have to do is keep wheat out of her diet to help her. Please help me protect my child and keep her (and her sisters) future a healthy and a bright one.

Here are some informative sites - and below I cut and pasted some information that can gives the medical information on her condition.

<a href="http://www.celiac.org/celiac disease-main.php" target="external ugc nofollow">http://www.celiac.org/celiac disease-main.php</a>, https://www.celiac.com/, http://www.celiaccentral.org/What_is_Celiac_/13/

What Happens With Celiac Disease

When individuals with celiac disease ingest gluten, the villi, tiny hair-like projections in the small intestine that absorb nutrients from food, are damaged. This is due to an immunological reaction to gluten. Damaged villi do not effectively absorb basic nutrients -- proteins, carbohydrates, fats, vitamins, minerals, and, in some cases, water and bile salts. If celiac disease is left untreated, damage to the small bowel can be chronic and life threatening, causing an increased risk of associated disorders -- both nutritional and immune related.

Some long-term conditions that can result from untreated celiac disease:

Iron deficiency anemia

Osteoporosis

Vitamin K deficiency associated with risk for hemorrhaging

Vitamin and mineral deficiencies

Central and peripheral nervous system disorders -- usually due to unsuspected nutrient deficiencies

Pancreatic insufficiency

Intestinal Lymphomas and other GI cancers

Lactose intolerance

Neurological manifestations

Other associated autoimmune disorders:

Dermatitis Herpetiformis (DH)

Insulin-dependent Type I Diabetes Mellitus

Thyroid Disease

Systemic Lupus Erythematosus

Liver Diseases

Less commonly linked to celiac disease:

Addison

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I haven't battled the school with Celiacs yet, our battle has only been with a peanut allergy. But boy have I learned ALOT! In a few years my little Celiac goes to school, so my fun starts then. But here are some things that have worked well for us.

First, your teacher probably means well, but just forgot. End the options for the teacher to forget. Provide a safe snack box and safe candy bin for your child. Also, provide a safe craft box for your child - glue, putty, paint, etc. I also found my child does much better when she has "cool" safe snacks in her backpack at all times.

Provide a laminated sheet with the highlights of Celiac disease and the NO FOOD UNLESS PROVIDED BY MOM statement to the teacher, provide an extra specifically to be left in the substitute lesson plan book. Include a picture of your child on this sheet. Provide a copy to the lunch room and the nurse adn possible specials teachers.

Call the District Head of Nursing. Ask for the policy regarding food allergies and Celiacs. This person will control how your school nurse and clinic aide handle to education of staff in your kids school.

Gather your info, go in to talk to the Principal to ASK how they normally handle this disease. Do they have other kids in the school with Celiacs? Provide information and documentation for the Principal. Once you find out what they normally do, you can determine what changes need to be made for your child. Then pursue a 504. That is the only safety net for your child. That makes the school legally responsible.

Plan a conference with the teacher. Give her a small book on Celiacs that gives a brief explanation of Celiacs and all the problems that come with it. Help the teacher as much as you can. (You need her as a protector of your child while at school.) Do they normally do lessons using food or candy? what types and why? I provide Skittles and cereal for lessons on counting, sorting, glueing, etc. Do they use any materials in the class like playdough, slime, etc. Sometimes they are used when and where you would not expect it.

Next, go talk to all the "specials" teachers like art, music, gym, etc. Explain the issues, answer their questions, find out what items are dangeous in each of those classes. Do they hand out candy or snacks? Make sure they understand the restroom issue. etc. The Art teacher would be especially concerning to me. You may need to provide a box of safe materials.

Finally, if at all possible, volunteer in the class or at stop stop in weekly in the morning to check in, say hi, answer questions, refill supply bin, etc. It takes a few minutes, but makes a world of difference. Always check in before holidays and potential party times to determine what can be done to make the party as gluten-free as possible and still fun for the class. Offer to supply whatever gluten-free items you can for the class, just make sure the food is unbelievably to die for good. If you supply something that is gluten-free but just edible, then you are opening the door for terrible teasing. (Hot fudge sundae parties work well - messy but the kids will love it.)

Hope some of this is useful for you. Good luck with the school.

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You are doing a great job advocating for your child, and I hope your school is very responsive. One day I forgot to send a lunch in for my child (had packed it ahead and left it in the refrigerator) and found it just in time to rush it to the school for lunch. My second grader was standing in the cafeteria line when I took it to him, looking panic striken, saying, "My teacher said I had to eat something. She said I had to." Between his pickiness and celiac disease, there were literally no options for him. I sent his teacher a follow up email, saying that I was sorry I hadn't made the situation clear enough. She sent me an email, then also called to apologize, then apologized to my son. Sometimes people will make mistakes, but at least she took it quite seriously. If you don't get the same feeling from your daughter's teacher, I would definitely move up the chain of command.


Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy

Elimination diet resulted in avoiding dairy, soy & corn for a time

Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

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Guest hightop girl

I am a teacher in a public school. I now teach middle school, but I taught 3rd and 4th grade for a long time. I can not imagine any teacher I know deliberately ignoring a childs food allergies, but I can imagine a teacher asking students to pass out treats or just plain forgetting because there are 29 other students in the class. That does not mean it is ok, merely a problem your child and you will have to deal with a bit longer.

As a teacher, a mother, and a celiac, here are my suggestions:

1) teachers and schools understand peanut allergies. They are life threatening, as is celiacs in children, just not in the same immediate way. Explain it in the same simplistic terms. We have lots of special requests by parents, and this will get a teacher's attention.

2) Provide special snacks that the teacher can give out when birthday treats, reward candy, etc are being passed out.

3) Provide nonfood rewards for the teacher. Food is easy. Candy, cupcakes, etc. are cheap and easy to pass out for rewards. If I have something else, stickers, erasers, pencils, etc. I let students choose their reward.

4) Make sure your child says "no" to any food other than what you send. Nine yrs. old is not too soon. I have had nine yr old diabetics, peanut allergies, sun allergies, and kids on meds that required special diets. They were able to voice their needs at that age, and their parents had built in incentives at home to reward the student when they followed the special diet.

5) Finally, I totally agree that you need to meet with the teacher, the nurse, and the principal, as well and the school counselor about your child's special needs and develop a plan (504 or other) as needed.

The bottom line is this is a lot of work. It isn't a peanut allergy and the effects aren't seen while your child is at school. They are seen by you at home. And it is harder for your child to see the effects, so you will really have to work hard to help them feel like it is worth it to pass up the pretzels and cupcakes and candy for the special food, but it is doable. Hang in there.

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Just as a precaution I would keep a folder with the email to the teachers & the replies. I would also document your childs needs in a letter & hand it to all the people mentioned in the posts above, including the school district health director, principal, district school board AND I would also mail a certified copy, to all the same people so that you have a receipt that they got the letter.

Then anytime there is a slip up - I would repeat the letter writing process...

In addition to a 504, meetings, conferences etc etc etc...

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Thank you so much for your help and suggestions - I am pursuing the meetings and today the school nurse called me. She sounded very serious and was extremely apologetic, and I felt much better after speaking with her. The only thing that bothers me is that it seems as though her teacher is put off by this now. Today when I picked my daughter up the teacher kind of shrugged and said "No cupcakes for Esa today.. sorry, but I did what you said." It made me feel like she thought I was just being unreasonable and it felt like she was being smart. Maybe I am just catching her at bad times so I am going to try and talk to her again tomorrow.. but it does seem almost like she is bothered by this... anyone else have this issue? :unsure:

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Thank you so much for your help and suggestions - I am pursuing the meetings and today the school nurse called me. She sounded very serious and was extremely apologetic, and I felt much better after speaking with her. The only thing that bothers me is that it seems as though her teacher is put off by this now. Today when I picked my daughter up the teacher kind of shrugged and said "No cupcakes for Esa today.. sorry, but I did what you said." It made me feel like she thought I was just being unreasonable and it felt like she was being smart. Maybe I am just catching her at bad times so I am going to try and talk to her again tomorrow.. but it does seem almost like she is bothered by this... anyone else have this issue? :unsure:

"no cupcakes for Esa today..sorry, but I did what you said"? What does that mean? Did the rest of the class get cupcakes? What did your daughter get then? Maybe because I am hearing it second hand, but that sounds very flip to me. If you haven't already, I would ask her to write a letter to the parents requesting advanced notice to parties so that you can make sure Esa has an extra special treat too. My son was in kindergarten last year and it worked very well. This year the teacher prefered to do it differently. I keep a cupcake or brownie or such in the freezer in school (2 really) so that if there is a party the cupcake is already there and they defrost it is the morning. As far as holiday parties, the class parents who run them (unfortunately, I am a working mom) always talk to me about what is going to be there and what is safe for him. Anything that isn't safe I provide an alternative. I would seriously suggest a sit down meeting with this teacher, I am not sure about the cupcake comment.

Nicole

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Thank you so much for your help and suggestions - I am pursuing the meetings and today the school nurse called me. She sounded very serious and was extremely apologetic, and I felt much better after speaking with her. The only thing that bothers me is that it seems as though her teacher is put off by this now. Today when I picked my daughter up the teacher kind of shrugged and said "No cupcakes for Esa today.. sorry, but I did what you said." It made me feel like she thought I was just being unreasonable and it felt like she was being smart. Maybe I am just catching her at bad times so I am going to try and talk to her again tomorrow.. but it does seem almost like she is bothered by this... anyone else have this issue? :unsure:

Oh yes....I have gotten that attitude on a couple of occasions. You will work past this as will the teacher. Just bear in mind that you have to do what is best for your dd. And occasionally, mistakes will be made and there will be a need for you to firmly respond. The teacher may be suffering from some guilt and/or embarassment over the situation (and the consequences in regards to you following up with a meeting). Just continue being polite and open.

Also, if your dd really likes the teacher and you feel that this incident was an exception rather than the rule in regards to the teacher's ability to deal with your dd....bring that up at the meeting. Last year, I had to call a meeting with the teacher and administrator over cross-contamination issues. At the very start of the meeting, I made sure that the administrator knew that I had not called the meeting because of any neglect on the teacher's part. This was her first year dealing with a child with gluten intolerance and multiple other food allergies. What I was there for was to address specific incidences of cross-contamination and I wanted a plan of action put together to prevent them in the future (including the right to pull dd out of school on some days if the projects were food-based and cc risks high).

You may want to start off your meeting by defending the teacher's personal integrity a bit and saying that you aren't singling her out. Rather, you are overwhelmed by all you need to learn to keep your dd healthy and that this incident has shown you that you aren't alone in having a tough time grasping the issue. Celiac Disease is not like a peanut allergy. There is no anaphylactic response where 911 needs to be called. However, that does not mean that it should be treated less seriously. Ask the school staff what you can do to make this easier for them to understand to avoid any issues in the future. And explain to them that your dd's health care now needs to be a group effort. They all have to learn the ins and outs of dealing with this on a daily basis because it is not going away and they will be seeing more students with this disorder in the future. You are helping them prepare for that and everyone involved should be working together from here on out to provide a safe atmosphere for your child.

Hope this helps a bit and good luck at the meeting!


Vicky

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Guest hightop girl

I am sorry you are having such a problem at the school. I did think of one other thing to help the teacher, other parent helpers, other students and your child remember... we often put a little red stop sign taped to a student's desk or area at a table to help them (and others) remember that there is something they are not supposed to do. My guess is the teacher thinks that it is on the same serious level as a chocolate or milk allergy.

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Well, at first- the training starts with your child. This episode I think did make her aware that she should NOT eat anything besides what you pack for her, also at 9 she can read. snacks usually have shorter labeles and she could actually check herself until she has automatically the feeling for ok, this is wheat stuff. Anything breadlike hard or soft, anything made out of some typ of doe usualy does. Many here do remind their child when they do get sick it was becuase they ate this and that or did this and that, even if it means admitting that you yourself actually accidentally glutened your daughter. And that will happene to specially since you are so new to this as well!

Get yourself a book called Glutenfree for Dummies, bu diana Korn, it is awesome! She's a Celiac herself and I doubt there is any topic concernig Celiacs she had not covered, from talking to the school, to Restaurants to what ever and also where the hidden glutens are like Malt, Soysauce and so on! It also has things in it to copie to explkaon plain short what she can have and not have a card to give to the teacher she can pinn it on her wall or where ever it's not bifg but full of info, also a sheet you can copie which explaines what celiac is, easy to understand ffor everybody. To me a MUST-have (so easy to read and it's done so you can start where ever in the book to read)- Glutenfree for Dummies by diana Korn! there are also bookd out there for your kids, that explain in a funny but still serious way what is going on with them and why they can't have their favourites anymore and what it does withthem, that should help too!

you should also let her help you read labeles at stores, you rfead together, she''' be soon a whiz in understanding and reading the labeles herself if she gets into a situation herslef where you are not there to aks! And most important rule" If you are not sure, never eat it!

Soon, I'll be in your shoes acutally and I'm scared. My daughter is a Cleiac an my son as it tunres out according to his stooltest by enterolab is Gluten-sensitive, course of action is clear, he needs to be glutenfree too. I'm not sure how I'll be doing it with school since I'll be batteling the same problem as you- since his symptoms are not as visible as with your daughter, I can't show a tape like yiu evwen though I would if I could and maybe will have to with my daughter someday when she's in school (shes 17 month). In addition to that my son is only 5, getting him to NOT eat what all the others eat will be my biggest problem!

One more thing you can do for your eldest one, get a monthly plan of what their Lunchplan is. Maybe you could make her glutenfree versions of the things the other kids get that day. so she'll not stick out and still live healthy and it'll be easier for her to still feel equal. Her stuff will look the same but still be different!


Susi with Shayden and Brandy

Shayden, pos. with DQ 2, pos. for Glutensensitivity with Tissuetransglutaminase Stool TgA 45 Units

Brandy, pos. with DQ2 + DQ8, DX Celiac Nov.07, gluten-free since Nov. 1st 07, Tissuetransglutaminase Stool TgA 63 Units

Me: Gastroscopy negative f. Celiac, IBS, Oesophagitis, Hiatus-Hernia

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Thank you so much for your help and suggestions - I am pursuing the meetings and today the school nurse called me. She sounded very serious and was extremely apologetic, and I felt much better after speaking with her. The only thing that bothers me is that it seems as though her teacher is put off by this now. Today when I picked my daughter up the teacher kind of shrugged and said "No cupcakes for Esa today.. sorry, but I did what you said." It made me feel like she thought I was just being unreasonable and it felt like she was being smart. Maybe I am just catching her at bad times so I am going to try and talk to her again tomorrow.. but it does seem almost like she is bothered by this... anyone else have this issue? :unsure:

If you can find out if you can have a special snack bin for Esa, also if you can pre pack some cupcakes or slice of cake for when they do have a bday party and a parent forgets. Most teachers would welcome use of their freezer in the teachers room or in your PTO office. I have celiac but have two children in my daughters class who have wheat allergies (not celiac), there parents also sent home notices in every childs backpack in the classroom and asked if they were to send something in to please notify them so their child could participate and they would send in something special for their child. It is really had for some children especially new diagnosed kids to understand the consequenses if they eat something. My daughter is great at reminding me when we go out to eat to say "new salad bowl and no croutons", after a while you child will get it. Remember not a lot of people know about Celiac and if it took us a long time to figure it out, it is going to take other people longer when they don't deal with it 24/7. Good Luck.

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