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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Inhaled Gluten Cause Reaction?
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SofiEmiMom    0

I'm not sure if this is the best place for this question..but, my daughter is celiac and will be starting kindergarten next year. There is only one kindergarten class in her school and every Friday they have 'cook' day. The children all participate in making something. Generally, they make something to bake which has flour in it. My question is, would it be safe to be in a room with gluten flour particles flying around? What is the probability of my daughter having a reaction? She has obvious reactions to gluten when ingested, but since being gluten free she has never been in the position in that she could inhale it (our house is gluten free). Any opinions, advice, or information about this would be aprreciated. We have a meeting with the kindergarten teacher next week to discuss it. Thanks everybody!

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Carriefaith    5

Inhaling gluten particles could definately cause a reaction, especially with kids since they may make more of a mess (more mess = more floor flying around in the air). Also another important issue to consider would be if your daughter was making gluten cookies/cake with wheat floor, got some on her hands and then wiped her mouth. That would also cause a reaction.

I would tell the Kindergarten teacher how serious celiac disease is and how it is crutial that your daughter is not put in a situation where she may get gluten. Some options:

-Maybe everyone can cook gluten free! Gluten free baking is not hard! Find some simple gluten free recipes and present them to the teacher. If it looks easy, the teacher may be more willing to accept. Here is a link:

http://www.celiac.com/st_main.html?p_catid...-12105179998.3b

Also, you can buy gluten free premade cake mixes. It is more expensive to buy gluten free stuff, but if you insist the teacher may go for it!

-The teacher could make sure that your daughter is at a safe distance while the floor is flying and maybe help with decorating (and have her wash her hands before touching her mouth).

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You do have reason for concern. I remember being in Kindergarten and doing cook days. The chances of her getting contaminated are very high so you should really talk to her teacher.

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Terri-Anne    0

As someone who has worked in a kindergarten for several years, and who is also a mom of a little boy who cannot eat wheat, my opinion is that maybe it's time for that kindergarten class to switch up the traditional Friday cook menu! They could start making things that don't call for flour, like apple sauce, or start using gluten free flour and guar gum. I use the gluten-free flour with Guar gum in my regular OLD recipes, and my whole family eats them. The texture is slightly different, but the finished products are not disgusting or anything close!

I think you are about to lay the groundwork for how serious your daughter's celiac disease is taken for her entire childhood, within the school among staff, and in the community among her peers and their parents. If you are passive about it, with the intent of not being "difficult", others may perceive that keeping your daughter away from gluten is optional. She has many years of birthday parties, sleep overs, etc. to attend at friends' houses, so I think you need to respectfully voice that baking gluten containing foods is NOT an option for her, and that since you don't want her excluded from full class activities, so they need to figure something else out. We had a meeting with my son's kindergarten teacher to tell her that gluing cereal, macaroni, etc. were not appropriate craft activities for my son, and that for class parties I could provide my son with gluten-free cupcakes, etc. His teacher has been very supportive, and has sent 2 notes home this year reminding parents to remind children not to share nor to bring treats for party days, she provides treats from my gluten-free treat list, so that Logan doesn't feel centred out in any way. Logan even went to his first birthday party just before Christmas. The kids all had hot dogs, I spoke with the mom ahead of time, and she prepared his gluten-free wieners in a seperate pot, put them into the rice flour buns I sent with him, and served him his gluten-free chocolate fudge brownie I had also sent with him. We have received a very positive response so far, and seeing as these kids will be his peers possibly until he graduates, I think it's important that everyone understand his different but manageable needs.

You might suggest alternate flour that you can even pick up with the class budget money normally spent on baking days, and even spring for the xanthan gum yourself. But then you have to be worried about the baking surface being contaminated from prior gluten baking, and the bake ware maybe not being cleaned thoroughly unless you volunteer to clean the bakeware yourself.....

I think in these times, with peanut ALLERGIES becoming more and more common, and obviously deadly, that people are learning to be tolerant of different dietary needs, and will probably cooperate pleasantly, if not enthusiastically. Nobody want to purposely inflict abdominal pain and diarrhea, etc on a little girl, not to mention the less obvious, but more serious intestinal damage! Please do take a stand for your daughter's sake. :DYou are setting the stage for the rest of her life!

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SofiEmiMom    0

Thank you everyone. I guess I just needed to have my feelings reaffirmed. Yesterday, I actually spoke to a Mother who has a gluten intolerant child who went through our schools kindergarten with this cook day. It made me question myself even more because after unsuccessfully trying to get the kindergarten teacher to budge on her methods, she just let her daughter participate with the cooking and then brought her own snack. Her daughter gets horrible hives if she touches gluten and she never had a problem in class. So I was thinking maybe it would be ok for my daughter, too. But my gut instinct is telling me it's not. It upset me to hear what that teacher told her...she asked the mother "Well, have you ever had her in a room with flour?" the mother replied, "no". In which the teacher responded, "Well, how do you know unless you try?" The audacity of this teacher astounds me. Who is she to tell the Mother to 'test' the child on a gluten infested room? My challenge is greater now that the Mom gave in and her daughter didn't appear to have a reaction. It's the battle between wanting your child to feel included vs. keeping your child a certain 100% safe. As you all know, it can be exhausting trying to educate the world around us about Celiac, on a daily basis. I appreciate this board and all of you who help keep people like me strong and convicted. Thanks again.

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I was thinking about your child yesterday and how I felt when I was 5. I am 19 and always had food problems but didn't know about Celiacs until 17. I remember feeling left out at times like when we would all go take trips to buy milk for snaks, or have chocolate birthday/halloween/holiday treats, or not being able to buy lunch. The times I remember more though are when others made sure I was included. . .like when having homemade cookies for birthdays in class they'd make sure to have some I could eat, too (when we thought I couldn't do choc). So, if the teacher doesn't want to do all cook days glutenfree maybe she could find something special for your child to do? Like participate with another class doing somethin fun that time or be able to go to the library and play games (when I was 5 I couldn't wait for the time of day when we went to the library). Just something she'd like to do. Good luck!

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Boojca    0

Does your child have medically diagnosed Celiac? If so, you need to have your doctor write the appropriate paperwork and submit it to your school to undergo the 504 process. They MUST comply with this, as it's a federal protection for people with issues that preclude them from participating in such things and forces schools to make the adjustments that will allow students to not be left out of school activities. Adjusting the "menu" is easy.

Also, as a side note, you do not get a gluten reaction from inhaling flour. It MUST pass through your small intestine for you to react. However, if your child has DH then touching it might aggrevate that (thankfully that is not an issue I have to deal with) BUT, bc your child is young he/she may not completely wash her hands after the activity, which means the second she puts her hands in her mouth she'll be contaminated. OR, if the other children do not wash after the activity, or the flour dust gets on the surfaces they use after the activity and then she touches her mouth she'll be contaminated.

Basically, you must make this teacher realize this is NOT a little issue. And the 504 will certainly do that.

Bridget

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You can get a reactions through inhaling as well as touch. This does not happen for everyone though and is rare.

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hapi2bgf    0

My child is not off to elementary school yet, but I have already looked into how her school handles food allergies and it is NOT good. I know I have a long fight ahead of me. My own opinion is get your documentation (504 and leeter from Doctors in order) and insist that the Principal sits in on this meeting. Provide a list of acceptable foods that the all of the kids can make that are safe for your child as well. Offer to be the "Mommy helper" on some cooking days especially at the beginning. Make it hard for the teacher to say "I didn't know . . . wasn't gluten-free"

If all else fails, have a lawyer send a letter. Nobody like to hear from a laywer.

Best of luck!

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Ruth    0

You know that if this were a peanut allergy, the teacher would completely understand and not make peanut butter cookies!

Sounds like this teacher needs to be educated. Your child should be able to participate in the preparation and eat the prepared snack. There are some great kid-friendly gluten-free recipes on this web site...

http://www.kidshealth.org/kid/health_probl...rgy/celiac.html

I hope the teacher understands and sees that cooking gluten-free is not scary, or strange. It won't even have to be mentioned to the rest of the class... except of course with the parents of kids with other allergies!

Good Luck!

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SofiEmiMom    0

Thank you, thank you everyone! I have good news. We met with the teacher, and I feel that it was very successful. The approach I took was not only the Celiac angle, but a 'healthy nutrition' angle which made it seem like a much bigger issue than simply about my child. First I provided a fair amount of documentation about Celiac (not too much to overwhelm). I have pamphlets specifically for teachers. I found some articles linking the increased risk of cancer in Celiac patients who continue to consume gluten...I tried to find articles with strong, familiar words like Cancer to help the teacher understand better. Then I had documentation about how important it is to instill healthy eating habits in children (not hard to find). It's not difficult to see that most fatty, sugary, bad foods for children are baked goods - the prevelant item in 'cook day'. So I knew that if I could eliminate those foods, then it pretty much takes care of the gluten issue at the same time. She couldn't argue with me on the nutrition stand point. I had so much proof and information that at one point she was totally speechless and her face turned beet red. In the end she said that she would do anything to keep my daughter safe and she handed over the entire recipe list for the school year and said feel free to change the entire thing!

Again, I want to thank those who responded. I for one, at times, need the good people on this board to help lift me back up to my convictions when the rest of the uneducated world has beaten me down. Thanks again!

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How very excellent! Good to see the teacher is willing to work with what your daughter needs!

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brdbntL    0

Where did you find the pamphlets for teachers. My daughter will also be starting Kindergarden next year and I would like to be able to get ahold of that pamphlet.

Thanks,

Laura

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SofiEmiMom    0

I found them through the Canadian Celiac Association. I'm American, but I couldn't find any of the groups/associations in the states that had a pamphlet specifically for Teachers. The toll free number to order is 1-800-363-7296.

The pamphlet is nice because it has a section about "in the classroom' that details ways in which we seek the assistance of teachers.

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Merika    0

Hi,

I think it is excellent you are doing this for your daughter. It is very important to protect her from gluten in craft/cooking projects. Have you ever put flour in a mixer and watched it float up and everywhere - try it in a sunbeam and you'll see what I mean. As for inhalation, it *definitely* counts. Here's 2 recent stories:

I was at a neighbor's house - he's remodeling almost from scratch, and was at the stage where drywall and whatnot is going up. Major dust everywhere, he was coughing from having been in it all day, and it was the end of the workday. I was inside maybe 30 minutes max getting the "tour". By the end I was getting nauseus and bad concentration. Felt better once outside, but 2 hours later at home collapsed on the couch dead tired and glutened. Yes, drywall and joint compound (being sanded - everywhere!) have gluten.

The other story is from my mom, also celiac. She had a client and visited them at a food factory, which made pasta. Every time she went, on the long drive home, she'd have to pull into a rest stop to take a nap, she was just too tired to be safe on the road.

Dh has been banned to making the stray batch of cookies outside on the patio. I won't have gltuen flour flying around my house. :)

And as for kids, it's just about impossible for them to keep hands clean. Even if your child stayed away from the activity, the other kids would be covered in it, and everything the touched in the room would get covered, and eventually your child would get covered in gluten. It's just kids, yk? :)

Merika

-hoping not to face this with her son, now age 3, gluten-free, and untested for celiac yet

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Being an elementary school teacher [who is currently 'not-working,' but is writing children's books] and having 2 younger brothers who are also elementary teachers, I believe you should follow-up with DOCUMENTING everything discussed in writing, and submitting copies to the school board and Principal, along with the teacher. Let them know that you and she spoke, and what exactly she agreed to. This will help to ensure compliance, and will also emphasize with the school district's admistration how important it is for them, legally, to do so.

[Another thought - IF there ever happens to be 'a sub' on cooking day, the Principal would then have to be responsible...].

You're a great mom.

You're daughter is lucky!

Glad she seems to have a good teacher, too -

Gina

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SofiEmiMom    0

Thank you so much Gina! That was such a nice thing to say. We Mom's don't get much recognition for our hard work..thank you for your kind words.

Thank you for the advice, as well. I did document everything, but I haven't given it to the Principal yet. Great point about the substitute teacher, I hadn't thought of that.

I did get confirmation from a GI doctor that inhaled gluten can indeed cause a reaction. That helps too. Seems like the gluten dangers are never ending.

Thank you again for the support.

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      Weak Positive 4 - 10
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      Tissue Transglutaminase (tTG) has been identified
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