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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.

How Do Your Kids Talk To Adults About Gluten?
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5 posts in this topic

My 9 yr old has celiac disease. She does very well (for the most part) speaking with adults about her celiac disease. In our school system, there are only two children with celiac disease and the other one goes to a school across town (very small area by the way). She has two different approaches (that I've discussed with her). If she's talking with someone she will see often (teacher, youth group, coach, etc) she tells them that Celiac Disease is an autoimmune disorder and she cannot eat gluten and she's uncomfortable touching it (she sometimes breaks out after handling wet gluten). If she's talking with someone she won't see that often (substitute teacher, a friend's parent, etc) she tells them that she is allergic to gluten and can't eat wheat and some other items. (She knows the difference between allergy and auto-immune but some of the people she talks to simply glaze over and get confused).

The problem comes about when well-meaning people (and some claiming a diagnosis of celiac disease) try to push foods on her. They'll hand her half a cookie with a wink and tell her that they won't tell me or my husband. Or, they'll tell her that small amounts won't hurt her; that they have allergies too but they can still eat (dairy, eggs, wheat, whatever) on special occasions. One lady even told her that her kids had celiac disease but she always let them eat pizza on Friday nights. On those occasions, she's very polite about telling them that even small amounts of wheat make her stomach hurt really bad and makes her throw up and refuses it. (It's rare that she throws up, but people seem to become alarmed at the thought of a child throwing up. They don't get overly bothered by stomach aches.) There seems to be a feeling that she WANTS gluten but can't have it so they try to help her cheat. (If that makes sense?). We can usually work through those situations without too much trouble.

However, sometimes people try to 'help' by fixing her a plate because of her celiac disease or pick her up something on their plate. They'll stack boiled shrimp on top of a piece of bread (for example) and then deposit the shrimp on her plate. She won't touch them if she sees it has been next to (or on top of!) gluten items. But when she tells them that her food can't even touch gluten, we do get some eye-rolling. Is there any polite way for her to say this that sounds non-dramatic? I know the easiest thing is for her to simply fix her own plate, but sometimes they just bring her things or if she's getting up to get more potato chips (or whatever) they say they will bring it back for her. She's a bit uncomfortable insisting over adults. If myself or my husband is around, we say it for her, but she's doing more activities where she may be on her own during meal times.

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Sounds like it is time she learns the "Mom will kill me" defense. My 18 year old is still using this to get out of bad situations.

You can practice some of them with her. You will be the bad guy or you can alternate with Dad (we do).

Adult -"I'll grab you some more shrimp"

KId- "My mom says I have to always get my own food!"

Adult-" I'm sure its fine. Your mom knows me. I'm your Aunt for goodness sake!"

Kid - Jumping up & hurrying to the table "Can't. Mom said I can't go to parties by myself if I don't follow these rules. She always finds out, somehow."

Kid friends - "We'll be fine if you put 6 of us in the back of the truck to go McDonalds"

Kid - "My mom has people who tell her how I am driving. Someone will see me & tell her. My dad will sell my truck. Mom will make me stay home on the weekends & clean the bathrooms. Joe, you've met her, you know my mom."

It helps to have a brother or sister or someone else to back it up. "My friend, Silver, is fanatical about her daughter's food. Let Kid do what she's been told." Eye rolling is OK.

You have to be prepared to back her up when your sister says the next day that she wouldn't let her get food or eat the shrimp off aunt's plate. They say this stuff to the friends a few times & the friends start believing it. You have to be prepared to admit to being an overprotective or mean parent.

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"Can't. Mom said I can't go to parties by myself if I don't follow these rules. She always finds out, somehow."

This is a great defense. I live in a small town and a friend of mine always yells "I know your mother!!!" when she sees some kids behaving inappropriately. And really, everyone here knows what everyone else is doing.

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My son is dealing with the same kind of thing from other kids at camps. I haven't figured out how to make him feel better about it when someone is really insistent. Fortunately, like your daughter, he is fully committed to the diet and would rather go hungry than accidentally get glutened!

We NEVER eat food prepared outside of our own kitchen (or one of a handful of trusted, gluten-free & GAPS kitchens). We send food with our kids wherever they go, and we have made other adults aware that we are fanatical about this. If going to a potluck, we take out servings for ourselves before sharing.

We never tell people it's an allergy, because it's not. We do not want to spread misinformation, even if it is easier. Also, with an allergy people often have a threshold they can tolerate. If someone sees your kid come into contact with a bit of something processed with wheat and they don't have an anaphylactic response, they may never take it seriously if they think it's an allergy. We tell people the truth. It is autoimmune, which means even microscopic amounts make the body attack itself and cause serious internal damage.

I agree that the "my parents" are a great scapegoat for kids to use, if they are willing to use it. My son doesn't like that one when dealing with bullies because it makes him seem weak to them. But with adults, it makes sense to use it.

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The number one way to insure your kids can properly deal with both adults and other kids is to make sure your kid has confidence in theirself. As soon as a kid feels like he has to go along to fit in or is not self-confident then he/she has already lost the battle. Every child must be emotionally strong first in addition to being given the proper knowledge on how to speak about their specific needs. Food requirements should be treated the same as all other life safety issues. First, don't hide or coddle your kid. Tell them like it is so they have a good foundation to deal with peers and other adults. And build your child's self confidence and let them stand on their own as much as possible without treating them like a dumb kid. That just breaks down the self confidence you have to build or your kid will fail when faced with life's obstacles.

Another rant from a tell it like it is kind of guy...

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