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What Would You Do

beebs

By beebs
in Coping with Celiac Disease

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beebs Enthusiast
beebs
Posted

I received a pamphlet to send to my sons school as he is starting kindy this year. And in it it states that consuming gluten is "never life threatening", as some of you know my reaction to eating gluten IS life threatening. And It makes me so mad when I read stuff like that from the people who are supposed to know all about it! Am I over reacting? I know its not really common or anything, but my life is very important...to me. And I hate when Coeliac is minimised like that, don't they know that when they say stuff like that people in cafes think things like "doesn't matter if they get a little bit" blah blah.

I am totally over reacting aren't I? Should I say something to them? That it can cause fatal reactions in some people?? What would you do?

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stanleymonkey Explorer
stanleymonkey
Posted

I would tell the school this is a general leaflet and then explain your sons reaction, reinforcing g that everyone reacts differently to gluten (just like food allergies, seasonal allergies, food intolerance), that's what we did with my daughters school, and they were very willing to listen and always ask how she is feeling.

she got glutened a few weeks ago and they asked me what the should be on the lookout for and what symptoms meant they had to call me to collect her

Gfresh404 Enthusiast
Gfresh404
Posted

It can be tough to deal with stuff like this calmly and rationally when it hits so close to home.

I would just try to calmly and rationally explain to them that your reactions to gluten are in fact life threatening and that it's never good to down play this kind of disorder since different people can have totally different reactions.

Just take a breath :) It's worth getting all worked up over

sariesue Explorer
sariesue
Posted

If the language in the pamphlet you recieved bothers you, don't use it. Try to obtain a different pamphlet on celiac. If you can't find one that you like, then you can create your own. Just cite the medical facts from a reliable source. If you are doing it for education about your child's celiac this would be the way to go because you can tailor it to your child's reactions to gluten. What to look for in your child as a gluten reaction as well as general facts. Like if your son's gluten reaction usually starts with certain symptom or complaint. That way the teacher and other staff members have signs to look for if he accidentally consumed gluten during the school day. Also, a list of common kindergarten items that contain gluten like pasta based art projects and playdough.

saintmaybe Collaborator
saintmaybe
Posted

I received a pamphlet to send to my sons school as he is starting kindy this year. And in it it states that consuming gluten is "never life threatening", as some of you know my reaction to eating gluten IS life threatening. And It makes me so mad when I read stuff like that from the people who are supposed to know all about it! Am I over reacting? I know its not really common or anything, but my life is very important...to me. And I hate when Coeliac is minimised like that, don't they know that when they say stuff like that people in cafes think things like "doesn't matter if they get a little bit" blah blah.

I am totally over reacting aren't I? Should I say something to them? That it can cause fatal reactions in some people?? What would you do?

I would create a note or addendum if you like the other information in the pamphlet that says in rare cases it can be life threatening or even fatal. I had a professor in graduate school who's son died of acute complications due to undiagnosed celiac. So it does happen, even if it's not often.

Skylark Collaborator
Skylark
Posted

I would write a letter to the celiac society explaining that you are celiac and are concerned about the wording in the pamphlet because your own gluten reactions ARE life-threatening.

Is gluten life-threatening for your son as well? The school needs to understand that eating traces of gluten repeatedly will make him chronically ill and possibly cause long-term damage. On the other hand, you don't want them dosing him with an unnecessary epi-pen or calling an ambulance if he gets into gluten and it isn't necessary. Some people can really freak out and do stupid stuff if you give them the wrong idea.

beebs Enthusiast
beebs
Posted
  • Author

No, not life threatening for him, just annoys me in general - that just because its rare its like it doesn't exist, and it does! Its almost like one of those It's rare, therefore it doesn't matter thing. Grr. And someone posed a thing here the other day about the person who went into Coelaic shock and all their organs shut down! This stuff does happen sometimes!

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tennisman Contributor
tennisman
Posted

I received a pamphlet to send to my sons school as he is starting kindy this year. And in it it states that consuming gluten is "never life threatening", as some of you know my reaction to eating gluten IS life threatening. And It makes me so mad when I read stuff like that from the people who are supposed to know all about it! Am I over reacting? I know its not really common or anything, but my life is very important...to me. And I hate when Coeliac is minimised like that, don't they know that when they say stuff like that people in cafes think things like "doesn't matter if they get a little bit" blah blah.

I am totally over reacting aren't I? Should I say something to them? That it can cause fatal reactions in some people?? What would you do?

You are NOT over reacting . celiac disease is never taken seriously and it's very frustrating . Some people need to research and research again before writing wrong information :(

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