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      Frequently Asked Questions About Celiac Disease   09/30/2015

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

Managing Celiac When Your Child Is In Someone Else's Care
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My 3 year old daughter was diagnosed with celiac in September of 2012. An although I NEVER rely on someone else to care for or about her disease at times your kids can't help but be in the care of others. I am always very upfront and firm on the fact that she can't have that. I always always pack snacks to take with me when she is going anywhere and let them know she can only eat from that bag ( even if other options may be safe). Well today my daughter went to a class that was offered through the city we live in and I specifically asked the teacher if ANY food or drinks would be given or used for ANY purpose and told her my daughter was Not able to have any food or drinks unless I brought them for her and I was told no they never deal with food or drinks in class.... I pick her up and she tells me mommy we had COOKIES! What???? So I called and spoke to someone and of course got oh sorry, make sure you let them know blah blah. And then my daughter starts vomiting and has been vomiting for the past 3 hours straight :-/. How do you handle a situation like this where it was a blatant disregard for what was said and there is basically no recourse. I'm so sad for my sick little girl right now but also don't want to keep her from doing things due to her celiacs and people's ignorance. Thank you

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I would call city hall and tell them what you just told us. Get the names of the people you spoke to about not allowing food, and find out who fed her the cookies. Tell the people at city hall that you are considering speaking to a lawyer. (Even if that is the farthest thing from your mind, it will get their attention. That way they will NEVER let it happen again.)

 

In the meantime, maybe some Pepto and lots of water for your daughter? And when she's feeling better, talk to her about how important it is that she never eat food that you didn't pack for her. She is only three, but getting this sick might make her realize why she shouldn't eat outside food.

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Honestly, I'd go in and talk to the teacher.  Fear of lawsuits is a bigger problem in this world than actual ones, but that fear makes people do stupid things, so I can't encourage you to add to that.  But go tell the teacher - "she was throwing up for three hours after this class.  I specifically left instructions about this topic, and for you to disregard my instructions requiring a medical necessity is reckless and threatens her health and safety."  I would also file a formal complaint unless the teacher addresses your concerns well.  And, of course, pull her.

 

I suggest going to the teacher directly because it's possible there was a mixup for some reason, and it's the humane thing to do to offer her the benefit of the doubt.  But then chew her out if you find out that's not the case. :)

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I know it may sound. Bit mean but there may be a silver lining to this... Your daughter will probably remember how I'll the cookies made her. This may be the perfect opportunity to explain that the gluten made her so I'll, that is why it is very important that she only eats food you send her with. She may be sad at not getting the treat everyone else had, but she can have something else when she gets home.

My then 2 1/2 yr old ate something she shouldn't and told us her tummy hurt. We used it to reinforce being an advocate for herself. She never eats anything without asking, she turns down food from friends, and relatives without question. If they try to entice her she tells them she has to ask her mom and dad first. She has just turned 4 and tells people gluten makes her sick, and she gets a really sore tummy. She is also very strong willed, which helps her stand up for herself.

I second talking to the teacher, and resend any letters documentation to her to reinforce how serious the issue is. If you get no response, go to the school district. Would they give a cookie to a child with an anaphylactic allergy? No! So why would they give a cookie to a child who could suffer permanent complications from gluten? If necessary print out the long term effects of gluten, it might seema. Bit heavy handed but will get the point across. My daughters preschool asked for the info, and now her preschool is "crumb free" to keep her safe.

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Our kids have medical alert bracelets and allergy action plans signed by their doctor. All care providers are informed of the information, and we have always stated their celiac/allergies on enrollment forms.

I hope your daughter feels better soon. We also reinforce required hand washing protocols and check any supplies (crafts, games, activities) being used. We have had our fair share of problems with others not appreciating the severity of our issues, so please don't let it get you down. This is a long, sometimes very difficult, journey. We know...but we have heaps more good experiences now than bad ones! Yet we still find ourselves troubleshooting and tweaking protocols. Best wishes for a speedy recovery and future successes to come!

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I would encourage you, since it is so urgently important for your daughter to not have gluten, do not to leave her unattended.  She needs to have you, or someone who really understands with her to protect her.  A teacher won't always understand.  When you daughter does have the knowledge, and won't give in, then I would allow her to try something like the CE class again.

 

Diana

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I don't think it's realistic to be with her always. Yes she is only 3, but my daughter is 7 and she still sometimes eats things she isn't supposed to. (Luckily for us, she doesn't have any obvious reaction -- although that is also partly why she doesn't always remember to say no.) How do you decide when they're old enough? And being with my child all the time wouldn't have even been an option for me when she was 3 if she had been diagnosed then, unless I was going to quit my job.

 

I'd talk to the teacher and whoever at the city is running this program, and make sure they know how serious it is. But I agree that threatening to sue will probably not do any good, and I agree with not adding to the rampant fear of lawsuits. That could lead to the city not allowing any children with food allergies into their classes, just to cover their b*tts.

 

I hope your daughter is feeling better by now. What a nightmare.

 

Ironically, my daughter's at a birthday party right now, and just as I was typing this, the birthday girl's mom called to ask me if my DD can have pizza and cake. Um, no.... And I certainly think my DD would have said no to that. (We sent her to the party with extra snacks and treats.) But I'm glad the mom thought to call, at least.

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We had a similar experience with my son (at age 5) and a tennis program run by the city.  I filled out a registration form which clearly asked about dietary restrictions, I sent a written note with him, AND I spoke to the site director.  It was a tennis program and food was not a part of the program.  One day in the final week of the program he came home sick and I asked him if he ate anything.  He said he had some graham crackers but they were safe - the teacher checked them.  This sounded weird to me so I called and asked what happened.  Turns out a parent brought the crackers and was sharing them with the kids.  My son asked the teacher if they were safe for him and she checked the ingredient list.  Since "GLUTEN" was not listed as an ingredient (wheat was the first ingredient) she told him it was safe.  He was sick for a week.

 

I did contact the administers of the program.  Their policy is that NO FOOD be served to any child unless it is the snack they brought from home.  The teacher did not follow the policy.  Had this been a severe food allergy the result could have been far more tragic.  It is inexcusable.  The policies are there to keep kids safe, the staff need to take them seriously.

 

The following year, there was a letter sent home about the food policy and they enforced it.  There was also a new site director.  Not sure if it was related or not.

 

On a good note - we changed our "family" policy to be "only eat the food mom and dad pack for you unless YOU see "gluten free" on the actual package or unless you call me and verify that it is safe."  We no longer trust anyone to determine if it is safe or not - really, it can be complicated unless you know what to look for.  I can't be with him all the time, but he has called me several times when something has come up.  It is not a problem to quickly google something and find out if it is safe.

 

Cara

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This caught my attention because of this recent article I saw. She is young enough that no one will care what her tshirt says. You could also probably just contact a local tshirt place and have "don't feed me, I have food allergies" put on a tshirt. I have to say I would certainly have chewed someone's a$$ out back in the day if that were my kid. I would have started with the person responsible and worked my way up until I felt better. The person in charge of the program though should certainly know so they can take whatever steps are appropriate. This should never have happened.

 

http://gma.yahoo.com/blogs/abc-blogs/dont-feed-t-shirts-calm-parents-allergic-kids-100406887--abc-news-health.html

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Honestly, at 3 I couldn't/wouldn't expect my kid to say no to treats. My DS has been dealing with food allergies and Celiac since he was 14 months old. At that age they really are too little to know what's up. I wouldn't have left DS at all. He did story time at that age after I had a very long and detailed discussion with the teacher. I did not ever leave the library either. 

 

The no food from home rule is really key to teach for many kids. They are too young to be able to tell between a safe cookie and an oreo or cracker.   I would really raise a stink with this dept. and be sure the teacher knows how serious a mistake she made. If it had been a life threatening allergy, it could have been even worse. She needs to understand the seriousness of what she did.

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We taught our daughterno ingredients no eat, so if she sees no ingredients on something she refuses to eat it even if we offer it to her! She started preschool at 2 1/2 and we told her no food from anyone other than mom and dad, and she has never accepted anything. I think the age when a child is old enough to be an advocate for themselves depends on their personality. My monkey told the nurse who gave her her 12 month shots "no no no I don't like you I don't want it" so we figured she'd be pretty strong when it came to no to food!

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