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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Gluten Everywhere At School
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I'm working on Sarah's care plan with the school district nurse. The school is very understanding and accommodating, but she's also made it clear that they can't promise a gluten-free environment.

We are lucky that Sarah seems OK with minor incidental contact with gluten. As far as I know she's never actually eaten any since going gluten-free, but she's been eating at communal tables at camp/school for two months and we haven't noticed any reactions. So I don't feel the need to say that she has to eat by herself or that no one eating gluten can sit next to her.

But I started thinking of all those kids in the class eating all those gluteny things and then spreading it all over the classroom. I can tell them to have Sarah wash her hands before she eats, but is there any other way to deal with this, or do we just ignore it and hope for the best?

Also, she bites her nails and sucks on her hair. :o I guess we should start working on that, but trying to get a 6-year-old to break her nervous habits is a very uphill battle!

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We send in a placemat for our 7 year old to use in school. It is one of those "wrap-n-mat" thingies and at least I know his table surface is clean. I've watched the tables be cleaned and they basically just use a rag and wipe it all around - not actually cleaning it. I bought 5 mats (amazon) and send a clean one to school each day.

We also made it clear that he had to wash his hands with soap and running water before eating lunch or snack. Some schools use hand sanitizer to speed up the group for lunch, be sure you are specific.

Although our classrooms are not gluten free, we did request that they not use flour in any classroom projects (cooking, papier mache, salt dough, etc.) so at least it isn't airborne and settling on every surface.

We haven't had a problem with crumbs from other kids getting into his food.

Cara

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I love the placemat idea! I agree, schools always push hand sanitizer and I do not feel it comes close to soap and water, it doesn't even touch viruses like the stomach bugs- they need to give these kids 3 minutes to use running water, good grief! Especially when you think about the fingernails, I just think soap and water is so huge for kids, and the hand sanitizer is great in cetain situations, but should only be used when there is not a sink. It irritates me sometimes because there is a sink IN the classrooms at our school. So there is really no good excuse.

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Hand washing before any food is the most important thing for preventing cross contamination. Another area we were worried about is art class. We were very specific that no gluten products are to be use nor the containers from food!

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My biggest complaint was not the food that they ate but the food that they learned with. Twizzlers for math. Pasta for science. Stuff like that. She was told if she didn't touch them she would fail.

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The schools are turning themselves inside out to protect children from nut allergies. They should be willing to work with gluten intolerant children as well. I think a failure of this kind would be an actionable offense under the Americans With Disabilities Act, if the school is in the United States.

If my child were in a place where they were unsafe, I'd pull them out. The schools don't own our children, and it's not too hard to teach them at home.

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The schools are turning themselves inside out to protect children from nut allergies. They should be willing to work with gluten intolerant children as well. I think a failure of this kind would be an actionable offense under the Americans With Disabilities Act, if the school is in the United States.

If my child were in a place where they were unsafe, I'd pull them out. The schools don't own our children, and it's not too hard to teach them at home.

I want to touch on a few things you have said.

1) Kids with Celiac ARE covered under the ADA and eligible for a 504 plan which protects them from things like food in the classroom. This isn't just *given* to students, it needs to be applied for.

2)Not everyone has the chance to homeschool kids. I am not sure of the exact statistics but duel income households and single parent houses outnumber one parent at home houses.

3) Schools are not bending over backward for nut allergies. BELIEVE me they aren't. I have had to fight all summer for the school to change paperwork that impacts life saving medication my child needs. They are not bending anywhere to help him. Dealing with both Celiac and life threatening food allergies, it is VITAL that my sone not have gluten or his allergens. That said, IF he were to get gluten he would get sick. If he got dairy/egg/peanut/tree nut/banana or blueberry, he could die. Within minutes. So avoidance IS KEY for any kids with food issues but if they did give "preference" to nut allergies, there is a well documented reason for it.

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I want to touch on a few things you have said.

1) Kids with Celiac ARE covered under the ADA and eligible for a 504 plan which protects them from things like food in the classroom. This isn't just *given* to students, it needs to be applied for.

2)Not everyone has the chance to homeschool kids. I am not sure of the exact statistics but duel income households and single parent houses outnumber one parent at home houses.

3) Schools are not bending over backward for nut allergies. BELIEVE me they aren't. I have had to fight all summer for the school to change paperwork that impacts life saving medication my child needs. They are not bending anywhere to help him. Dealing with both Celiac and life threatening food allergies, it is VITAL that my sone not have gluten or his allergens. That said, IF he were to get gluten he would get sick. If he got dairy/egg/peanut/tree nut/banana or blueberry, he could die. Within minutes. So avoidance IS KEY for any kids with food issues but if they did give "preference" to nut allergies, there is a well documented reason for it.

I am not speaking to ALL schools, maybe it's not the case in yourarea, but there are a heck of a lot of schools that have been declared nut-free, I read about them all the time. All I am saying is, if they can manage that, they can manage to protect kids from gluten. And SHOULD. For example, another poster whose child was told they would fail if they did not handle gluten-filled manipulatives. That is outrageous and the perpetrator of that statement needs to be called out and corrected. It seems you missed that the importance of protecting children was the point I was making. I am sorry that you have had such a struggle to keep your child safe, the schools darn well should be able to accommodate these needs and protect every child in their charge.

I don't recall saying I thought ADA accommodations were "given", I don't recall making any assumptions at all. I simply conveyed the idea that the lack of support from the school should result in a complaint and demand for action from the parent, and the parent will have the weight of law behind them.

You don't have to be a "stay-at-home" mom to home school. Lots of working parents pull it off. How important is your child's health? I just think parents should really investigate whether they could pull it off, or whether they just think they can not. It is at least worth considering. I don't think I deserved to be shot down for suggesting it might be a possibility. I don't recall saying they MUST home school but it is ultimately the parent's responsibility to make sure the child is safe. Whatever it takes. Whether it means finding another school within the district, finding a private school, charter school, whatever. There are creative ways to do what you need without breaking the bank.

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Oh I would have had a fit if someone MADE my kid tough something that would make them sick! That is absolutely absurd. I would ask the administrators if they would make a kid tough raw chicken as a "manipulative". It would make them sick just as gluten can. As I said, I agree 100% that schools SHOULD help students managing food issues (there is are too much food in schools. Hello childhood obesity issue? Have a cookie because you behave? What the heck???)

As for the ADA, I was just trying to point out that there are avenues that can be taken the help LEGALLY protect a kid with food issues! It is very useful and helps everyone at the school and home be on the same page. So there are protections out there, they just have to be looked for by the parent. The schools don't get an $$$ for implementing a 504 plan so many shy away from them but I don't think I would put a kid in school without one if they had issues! Some schools are very good about accommodations and some need to be forced.

You are right, you don't need to be a SAHP to homeschool but *most* are. It takes a lot of time and energy that many working parents don't have. It was not my intention to shoot it down at all but your statement of pulling them out if they were unsafe and how it isn't that hard to homeschool came across pretty harsh. I am not sure if you have children or if they have any issues like this, but we parents of kids with issues get a LOT of advice that comes across as pretty critical. We are all trying to do our best for our kids and when people suggest that we aren't doing all we can to keep our kids safe, it can be really hurtful.

Again, I agree that accommodations need to be made for these kids. The reason peanuts/nuts get so much press is because when fatalities happen, it is often due to PN/TN. I have a kid with a peanut allergy as I mentioned and I am not in favor of bans on anything! If they banned everything my kid is allergic to to keep him safe he would be going to school alone! Bans aren't practical and aren't necessary IN MOST cases (there are people so sensitive that they have anaphylactic reactions to airborne peanut/tree nut/dairy).

This all to say, practical management (hand washing, not using food as manipulatives, no food birthday treats) are the best way to deal with food issues in school.

Again, I am sorry if you feel I was shooting you down. It was not my intention. Once the internet figures out "tone" of posts I think it'll be much easier to use the net for good, not evil ;)

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You are right, you don't need to be a SAHP to homeschool but *most* are. It takes a lot of time and energy that many working parents don't have. It was not my intention to shoot it down at all but your statement of pulling them out if they were unsafe and how it isn't that hard to homeschool came across pretty harsh. I am not sure if you have children or if they have any issues like this, but we parents of kids with issues get a LOT of advice that comes across as pretty critical. We are all trying to do our best for our kids and when people suggest that we aren't doing all we can to keep our kids safe, it can be really hurtful.

Again, I am sorry if you feel I was shooting you down. It was not my intention. Once the internet figures out "tone" of posts I think it'll be much easier to use the net for good, not evil ;)

Stephanie, I apologize if the way I wrote came across as harsh. I certainly did not mean to come across that way. I have no criticism whatsoever for those of you who are doing a she-bear's job of getting your kids through what the world throws at them. As you said, the Internet is unforgiving when it comes to "tone" and doesn't always reflect the sentiment we might have intended. Too many home school parents push homeschooling like a religion; I hate that. I've worked very hard NOT to be one of those militant homeschoolers, homeschooling is not for everyone! I just like to put a plug in when I can for those that might wonder if they could do it but avoid it just because they are afraid they won't do a good job.

I did have 4 kids, and managed to home school them all; unfortunately homeschooling did not avoid all issues, we still had plenty of things over which we had to do battle, LOL. As one of my favorite comediennes used to say, "It's always something...".

Thanks for being kind. :)

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I'm working on Sarah's care plan with the school district nurse. The school is very understanding and accommodating, but she's also made it clear that they can't promise a gluten-free environment.

We are lucky that Sarah seems OK with minor incidental contact with gluten. As far as I know she's never actually eaten any since going gluten-free, but she's been eating at communal tables at camp/school for two months and we haven't noticed any reactions. So I don't feel the need to say that she has to eat by herself or that no one eating gluten can sit next to her.

But I started thinking of all those kids in the class eating all those gluteny things and then spreading it all over the classroom. I can tell them to have Sarah wash her hands before she eats, but is there any other way to deal with this, or do we just ignore it and hope for the best?

Also, she bites her nails and sucks on her hair. :o I guess we should start working on that, but trying to get a 6-year-old to break her nervous habits is a very uphill battle!

I have always written a introductory email to all my DD's teachers explaining a little about Celiac and my concerns.

I always include the following info:

1.Please ask the children to wipe down their desks top to bottom. cleaning them side to side causing flinging of crumbs from desk to desk.

2, hand sanitizer does not kill gluten , please insure the kids wash their hands with soap and water before and after eating

3.Place my child at an end seat where ever applicable. .(To reduce cross contamination)

4. My child is not allowed to touch any gluten containing products for class (art/science) ie: Playdoh, macaroni, flour etc...

5.If you allow (birthday /party ) food please warn me as far in advance as possible to supply a substitute

6. Allow my child to use the bathroom as frequently as needed without waiting

The washable mats someone mentioned are fantastic. If you have and can be a "room parent" I suggest you offer to be one. By doing so you can control the food list and know when and what is being brought into the classroom.

good luck!!

ps

The best way to get assistance is to walk in with the "oh thank you so much for all you help my child will be so happy you are doing your best to keep her safe" smile smile attitude.

The first time I said "you have to do this" I was shut down and arms were crossed, when I went back with the (you'll catch more flies with honey than vinegar attitude) well........ I am now allowed in the kitchens working with the staff on safe food prep and they call me with new items to check safety. Just saying it works, and it sets you up for later years in other schools etc..

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I have always written a introductory email to all my DD's teachers explaining a little about Celiac and my concerns.

I always include the following info:

1.Please ask the children to wipe down their desks top to bottom. cleaning them side to side causing flinging of crumbs from desk to desk.

2, hand sanitizer does not kill gluten , please insure the kids wash their hands with soap and water before and after eating

3.Place my child at an end seat where ever applicable. .(To reduce cross contamination)

4. My child is not allowed to touch any gluten containing products for class (art/science) ie: Playdoh, macaroni, flour etc...

5.If you allow (birthday /party ) food please warn me as far in advance as possible to supply a substitute

6. Allow my child to use the bathroom as frequently as needed without waiting

The washable mats someone mentioned are fantastic. If you have and can be a "room parent" I suggest you offer to be one. By doing so you can control the food list and know when and what is being brought into the classroom.

good luck!!

ps

The best way to get assistance is to walk in with the "oh thank you so much for all you help my child will be so happy you are doing your best to keep her safe" smile smile attitude.

The first time I said "you have to do this" I was shut down and arms were crossed, when I went back with the (you'll catch more flies with honey than vinegar attitude) well........ I am now allowed in the kitchens working with the staff on safe food prep and they call me with new items to check safety. Just saying it works, and it sets you up for later years in other schools etc..

Thanks! Pretty much all of that is in her care plan, though I didn't think of specifying how the desks are to be wiped. I do plan on being in the classroom sometimes (though I can't be a room parent) so I can see how things are done. (That's not primarily why I want to be in the classroom, but it will be a good side benefit.)

I like the idea of those washable mats, but am not sure I can convince her to use one. If she starts getting sick from CC she might be more open to it. But at the moment she's very self-conscious about anything that makes her seem "different."

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I do homeschool but not due to celiac. However we go to church in a school and I use the kids bathrooms. Ours has where you push the water on and it goes off by itself. Seriously.... It is on 3 seconds. I have to keep pushing it down. There is no way a kid will keep doing it. It was not enough to even get my hands wet much less get soap off. No wonder kids get sick! Sorry. Just needed to rant about that cost saving measure that costs kids in the long run.

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Thanks! Pretty much all of that is in her care plan, though I didn't think of specifying how the desks are to be wiped. I do plan on being in the classroom sometimes (though I can't be a room parent) so I can see how things are done. (That's not primarily why I want to be in the classroom, but it will be a good side benefit.)

I like the idea of those washable mats, but am not sure I can convince her to use one. If she starts getting sick from CC she might be more open to it. But at the moment she's very self-conscious about anything that makes her seem "different."

We don't send a mat, but my son has a bento-box style lunchbox. So he opens it up, takes the lid off of containers, and it's kind of a like a plate with different foods all laid out. He has instructions not to take things out of the lunch box and put them on the table. I have no idea if he follows that request or not, but he can always just eat straight out of the bento box and keep everything clean. Maybe something like that would work - then you don't have to be different.

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