Ugggh!

[VydorScope]

We been trying to track down where gluten is comming from in my son;s diet. Well he goes to Sunday school at our church and this week I realy got on thier case about it, and the lady said to me "Oh? So grahm crackers are not okay?"

WHAT PART OF "ONLY ALLOWED TO EAT FOOD FROM HIS BAG" CANT PPL UNDER STAND????

[KaitiUSA]

Some people are just soo dumb.

That would make me mad if they did not listen to my instructions either.

[Smunkeemom]

We been trying to track down where gluten is comming from in my son;s diet. Well he goes to Sunday school at our church and this week I realy got on thier case about it, and the lady said to me "Oh? So grahm crackers are not okay?"     

WHAT PART OF "ONLY ALLOWED TO EAT FOOD FROM HIS BAG" CANT PPL UNDER STAND????

         

<{POST_SNAPBACK}>

I went through the same thing (still am )

I attatched a tag to my daughters diaperbag that is about 5in by 8in (it's huge I know) it says in big block letters

GLUTEN IS POISON FOR ANNIKA DO NOT FEED HER ANYTHING THAT ISN'T IN THIS BAG SHE WILL GET SICK AND IT WILL BE YOUR FAULT

It seems to work most of the time. I know it is tacky, but what are you gonna do when people don't listen

[VydorScope]

I went through the same thing (still am )

I attatched a tag to my daughters diaperbag that is about 5in by 8in (it's huge I know) it says in big block letters

GLUTEN IS POISON FOR ANNIKA DO NOT FEED HER ANYTHING THAT ISN'T IN THIS BAG  SHE WILL GET SICK AND IT WILL BE YOUR FAULT

It seems to work most of the time. I know it is tacky, but what are you gonna do when people don't listen

<{POST_SNAPBACK}>

We put a sitcker ON OUR SON. Big Neon Green on his back (thats the only side you ever see cause he is always on the move LOL)

[Smunkeemom]

We put a sitcker ON OUR SON. Big Neon Green on his back (thats the only side you ever see cause he is always on the move LOL)

<{POST_SNAPBACK}>

yeah at church all the kids have stickers on their backs with thier names on them Annika's has a bright red border and her name and under it in all caps it says ONLY FEED SNACKS FROM BAG!!!!!!!!!

[nettiebeads]

We been trying to track down where gluten is comming from in my son;s diet. Well he goes to Sunday school at our church and this week I realy got on thier case about it, and the lady said to me "Oh? So grahm crackers are not okay?"     

WHAT PART OF "ONLY ALLOWED TO EAT FOOD FROM HIS BAG" CANT PPL UNDER STAND????

         

<{POST_SNAPBACK}>

I'm glad you were able to track down the gluten source, but it's a shame you had to do it at all. I know people don't mean to be so ignorant, I once had a server bring me a plate of chicken penne telling me no gluten was added to it!!!! Obviously constant vigilance is our lot in life.

[Jnkmnky]

The real problem is lack of media support. If this was a well known disease, {as it should be at 1-133 having it} people would not consider feeding your child. People hear "peanut allergy" and don't screw with a kid... they hear Celiac disease and the idea is so abstract that they can't comprehend the harm they can do if they feed the person gluten. There's simply no way to educate the masses one person at a time. There has to be a media campaign that reaches larger sections of the general population. Even if people don't get ALL the details, they'll understand it's a legitimate disease and their ignorance can cause harm. Harming a person would be tantemount to declaring your ignorance, and no one likes to be outed as stupid!

[2Boys4Me]

Media attention would be great. Except that...they don't listen.

I work in a tv newsroom and pitched the Celiac Awareness month TWICE . Sent the info to the assignments editors (of that list, one is also a medical reporter, three are reporters, and two just send out assignments. All but one are parents) with all the pertinent info and statistics, told them to talk to someone at the society, suggested they talk to someone at the Canadian Food Inspection Agency about labelling, maybe they could go shopping with someone with celiac disease to look at the struggle first hand, etc. and I am STILL waiting to see the story .

Since I am in the newsroom in a technical aspect, I guess that I will have to put on another hat, so to speak, and go shoot, write and cut the story myself.

[Jnkmnky]

Media attention would be great. Except that...they don't listen.

I work in a tv newsroom and pitched the Celiac Awareness month TWICE  . Sent the info to the assignments editors (of that list, one is also a medical reporter, three are reporters, and two just send out assignments. All but one are parents) with all the pertinent info and statistics, told them to talk to someone at the society, suggested they talk to someone at the Canadian Food Inspection Agency about labelling, maybe they could go shopping with someone with celiac disease to look at the struggle first hand, etc. and I am STILL waiting to see the story  .

Since I am in the newsroom in a technical aspect, I guess that I will have to put on another hat, so to speak, and go shoot, write and cut the story myself.

<{POST_SNAPBACK}>

Keep working on them. Eventually, they'll have a slow news week and decide to use your Celiac idea as a filler!

[ravenwoodglass]

We been trying to track down where gluten is comming from in my son;s diet. Well he goes to Sunday school at our church and this week I realy got on thier case about it, and the lady said to me "Oh? So grahm crackers are not okay?"     

WHAT PART OF "ONLY ALLOWED TO EAT FOOD FROM HIS BAG" CANT PPL UNDER STAND????

         

<{POST_SNAPBACK}>

The witch in me (substitite b for w) would tell them that if it happens again you will talk to your lawyer, celiac disease is not a joke and they are making him sick by ignoring you. Make a big poster for them to hang on the wall that illustrates things he can and can't have and maybe once in awhile you could bring in a bag of gluten-free cookies and some apples or something for the whole class. Let them know you are trying to educate them about it but that under no uncertain terms they will be held responsible if they poison your kid again.

[VydorScope]

Well I guess in a way this is a good thing. He goes to this school on Sundays (for Sunday school) , then 2 1/2 days a week for "real school". In addtion he has goes there on Wensday nights while my wife is at choir pratice and I am in ASL class. Well the "real school" part is taught a by a great lady that has spent time on sites like this learning and has spent time calling up manufacutres of her art supplies her self. She even makes sure to sit right next to him at "meal time" so she cna make sure he does not eat from other ppls foods. He is only 2, he does not yet know better and is our worste enemy in this case!

The Wensday night and sunday teachers are a different set of teachers. Well this wensday night we though our son was well enough to go. It was only an hour and he seemed in good spirts. We droped him off at his class as normal (same building as my wife's choir practice, darn convient!). Well just as my wife went to get him to bring home he had some gluten caused D (from the incident metion earlier in the thread), and with our son this D is very inflamatory to his skin. talking bright red even bleeding at times. Well the 2 teachers there had a nice fisrt hand view of what gluten dose to him. He writhed and screamed in pain and it took 2 of the teachers to hold him down while my wife cleaned him up. My wife told me she was very much onthe ball about making sure they understood that the cuase of this was the gluten he got in thier school.

So while I dont want to say its a good thing he was suffering like that... maybe it was?

We are on day 6 now, and worst of it is behind us... for this round.

[Indea88]

My church nursery is where my toddler gets gluten all the time. He was stealing the snacks from the other children and it wasnt being monitored. Hes 2!! I now have to have him in the baby room because he is not able to grab snacks from the other toddlers. I have offered to be in the nursery. It is then that I will educate the staff about the importance of food allergies/intolerances and Celiac disease. I can relate to this frustration.

[Ursa Major]

Most people are totally ignorant about Celiac, and how serious it is. If a friend's daughter wouldn't have been diagnosed two years ago, and my friend telling me all about it, I wouldn't have known to diagnose myself, either.

When one little two-year-old at our church was diagnosed with a severe peanut allergy, ALL the nursery workers had to come in one Saturday for a two hour education session on peanut allergy, how to use an epi-pen etc. Our nursery has a sign, stating "peanut-free nursery". Peanuts aren't allowed in there, period, so little Amanda isn't able to grab it from somebody else, or somebody touches her (or kisses her, as tiny kids do) who had peanuts.

For all of you who have Celiac toddlers, maybe the very same policy needs to be followed in your church nursery. Talk to the person in charge of children's education or whatever you call it, schedule a teaching session (with you as the teacher, obviously) and enforce a NO GLUTEN policy in your nursery/Sunday school (whichever it is your kid attends. Ask them to buy gluten free treats to be given the kids (volunteer to bring them if necessary, and get reimbursed by the church).

That would (hopefully) solve your problems, and you could be more confident that your kids won't be glutened at church.

[ryebaby0]

I am Christian Ed. coordinator at a medium-sized church, and I have to tell you that there's no good reason for these sorts of dumb mistakes. We don't serve snack to our kids, or allow parents to send them, unless it's a very longgggg program or runs during a typical snack time. When we do, it's veggies, fruit, water. All our children with food issues are clearly noted in multiple places, and ANY snacks are cleared with parents -- first by phone, and then in person (when they drop off kids --"This is what we're having, just so you know"). Our program is small enough that we basically just avoid things we know some of our kids can't have, then nobody is worrying about x-contam. issues.

Posting "peanut-free" is very problematic, because it makes the church liable for the peanuts that somebody else brings in to a nursery, smears on a table. Little Suzie Allergic puts her hand down, sticks it in her mouth, and wham-o, it's lawsuit time and we can't even figure out what happened. Threatening a church with a lawsuit is, IMHO, a sign of a bigger problem. If you feel the only way you can communicate with the people watching your children is to threaten them (and that assumes that they can only be motivated by fear, not love or concern), you belong at another church!

Joanna

[Ursa Major]

I am Christian Ed. coordinator at a medium-sized church, and I have to tell you that there's no good reason for these sorts of dumb mistakes. We don't serve snack to our kids, or allow parents to send them,  unless it's a very longgggg program or runs during a typical snack time. When we do, it's veggies, fruit, water. All our children with food issues are clearly noted in multiple places, and ANY snacks are cleared with parents -- first by phone, and then in person (when they drop off kids --"This is what we're having, just so you know"). Our program is small enough that we basically just avoid things we know some of our kids can't have, then nobody is worrying about x-contam. issues.

Posting "peanut-free" is very problematic, because it makes the church liable for the peanuts that somebody else brings in to a nursery, smears on a table. Little Suzie Allergic puts her hand down, sticks it in her mouth, and wham-o, it's lawsuit time and we can't even figure out what happened. Threatening a church with a lawsuit is, IMHO, a sign of a bigger problem. If you feel the only way you can communicate with the people watching your children is to threaten them (and that assumes that they can only be motivated by fear, not love or concern), you belong at another church!

Joanna

<{POST_SNAPBACK}>

Well, even though there isn't a good excuse for these things, apparently they do happen. So, educating all the caregivers is the only good policy, tol help them understand how serious it is, so they stop making the kids sick.

And the mother of little Amanda wouldn't dream of suing the church if she ever accidentally gets peanuts, that sign is just there to make everybody (even visitors) aware of the fact that somebody has a peanut allergy.

[ryebaby0]

I think you misunderstood me; I was agreeing that caregivers ought to be educated and churches should be on top of these things -- if they are giving you excuses, you shouldn't be standing for it. It's a very simple and manageable issue if a church only decides to train staff, educate parents and take it seriously. On the other hand, somebody at some point in the thread _was_ advocating threatening to sue, and that was the source of my other comment.

[Ursa Major]

Thanks for clarifying that. I did misunderstand you to a degree. And I agree with what you said. Suing the church for volunteers making mistakes would be extremely unhelpful in promoting understanding for sure.

[VydorScope]

Thanks for clarifying that. I did misunderstand you to a degree. And I agree with what you said. Suing the church for volunteers making mistakes would be extremely unhelpful in promoting understanding for sure.

<{POST_SNAPBACK}>

Its easy to get very angry and react accordingly in these matters, but sueing sure as heck wont help anyone, least of all the child. We had a long talk with the ppl that are incharge and we are dicusing option such as moving him in to a smaller class which would help at least at snack time with keeping him away from others foods.

We are faikrly new to this church, so it hopefully will just take a bit of time to get everything ironed out.

[Braunson's-mom]

We go to a small church about 50-60 people but when Braunson started to have problems our church asked me what snack he could eat. The church went out stocked our nursery with Malt-o-meal Corn Blast. All the children eat a gluten-free snack. That way we don't have to worry about anything. All the children don't mind eating that way and is a cheap alternative to aniaml crackers. May be you can ask your church to change the snack that they serve.