Protecting my kids from gluten...

[sammyloo]

Hi, My 4.5yr (son) old, my 21 month-old(daughter), and myself were all diagnosed about 7 months ago. It has been a rough transition, but we are starting to really find our groove.  My son's school has been amazing and thoughtful. All lessons with play dough were removed and they are very attentive to what he eats.  Today, my daughter was given cereal by a friend's parent right in front of me - even though they knew her restrictions - because they "have never heard of anyone that couldn't eat cereal. It is just cereal."She got a fistful in her mouth before I could get it away from her. I am so upset. I then go pick up my son from his second day of camp only to see him sitting there working with play dough that they had all just made - and eating lunch at the same time. I specifically wrote on the form NO play dough. I am so angry and resentful. I am pulling him out of the camp. I truly feel for parents of children that have life-threatening allergies - children should be able to trust grown ups to keep them safe once they are informed of their allergies. What else can I do besides tell people NO? How can I protect my children? I am so exhausted by our constant glutenizing (half the time I don't even know what did it - we do eat out occasionally but most of the time I can't trace it to that - and my kitchen is completely GF as far as I know) every couple of weeks - I feel we will never heal or they will never grow. Ugh.

[scsigrl]

What were you diagnoses with?  

People don't get it.  They just don't.  You try what you can and it sounds like you are doing your best.  Have you tried talking to the camp before you just pull your kid out?  It's better to try and educate and build bridges than just take him out if they are willing to listen. 

And you are right, life threatening allergies...don't get me started.  

[sammyloo]

Thanks for the reply! We were diagnosed with celiac disease and I can't tell you how much I don't want it. I am so happy to have an answer to some unexplained health problems and that my children were caught early and will eventually be on the right path, but I get so angry and bitter about it sometimes.

[scsigrl]

I understand.  My oldest has Celiac (and we are battling with strange test results at the moment) and while my youngest has been tested, she was really young.  She is on the same diet as he is because it is just easier.

I won't say it gets easier.  It does in many ways (you know things in and out better, what to watch for, who you can trust, what brands work for you and on and on) the people getting it doesn't.  There are always going to be people who say "It's just a little" or "It won't make them THAT sick" or "What?  What's that?"  It is hard.  I hate thinking that my sweet boy will NEVER just go out to eat with his buddies (he has life threatening allergies on top of Celiac).  It makes me sad for him and I would take it from him in a minute as I am sure most Mom's would for any kid.  

If your child is in school, they are covered under the ADA and you can get a 504 plan.  That is a LEGALLY binding contract that you can put in "No food from home.  No play dogh"  and those kinds of things.  My kid is only in preschool so the 504 doesn't apply yet but I will look into it in the future.  It doesn't help with camp but it may give you some ideas how to approach an organization with your concerns and ideas of how to keep your child safe.

Hang in there.  You are early in the game and you will get hip to things as time moves on.  :hugs:

[sammyloo]

So, I took your advice and talked to the camp and they could not have been more apologetic and concerned. They completely admitted they needed to rework their allergy/medical policies due to their "swiss cheese problem of kids falling through holes". They had emergency staff meeting about it - as I told them, my kid will feel lousy for awhile and get over it but the next kid might have a much more severe reaction and to consider this their fair warning. scsigrl - look at you be an agent of change! I was ready to walk away in disgust!

I am glad to know that other people have people around them that just don't get it. I feel so isolated at times. My own mother gave me a lasagna and said I could eat it because it was "simple. and vegetarian." Huh???? Then a few days later, she gave me a stew with just "some" flour. Every restaurant worker seems to think gluten means dairy.

Thanks Again!

[scsigrl]

Oh I hope that the camping thing works out! I am so glad that they saw the issue and are working to change things!  Way to speak up for your little one and help as you said not only for him bot other kids who will end up there!
 

Family....don't get me started! lol I think I have it *easier* because my kid also have IgE allergies (epi pen and all) so they DON'T give him anything that isn't approved by me.  The only time he was "glutened" was by my Mom.  She had my niece and nephew here with her (on top of my two) and she simply wasn't playing attention.  I was more upset because of the allergy issues.  She didn't bother calling me to tell me what happened which was an issue because she didn't even look to see if there was anything in the bread he was allergic to other that the gluten for the Celiac.  She is now very rarely allowed to watch my kids if she has the other two and if the other two are hungry while they are here, they can't have anything my kids can't. It just isn't safe.

She also got my niece and nephew cookies when we were out last week which they ate in front of my kids.  Nice, huh?

Some people just don't get it.  As much as we may try to educate, it often falls on deaf ears or (more often) closed minds.  If you need any help with meal ideas or anything, let me know.  We have been at this for over a year now.  You have MANY more options than we do in the GF area (finding no egg, nut and dairy GF items is tough!!)  but we have our staples that we can't live without!

Again, hugs!  Hang in there and it WILL get easier!!

[flightgoddess]

Maybe go shopping with your mom sometime? SHow her what to buy? Teacher how and where and when to use it? My parents have learned to be really great about reading labels, and getting things I can eat. Sometimes, they just need a little lesson.