A few thoughts about the newly diagnosed and an idea??

superdog · Joined: 01 May 2007 Posts: 116

Ok, since my son has started school, i finally got it threw my thick stubborn skull that celiac awarenes is needed. i also took my thoughts back to when we were first gluten free, and remembered how hard it was going gluten free. soooooo.....

this thought came to mind... i was wondering if the celiac support groups offer shopping with the newly diagnosed members to make it easier and more manageable. i remember first going gluten free and reading and reading, making sure everything was safe, so we mostly ate rice meat and veggies at first and expensive things we knew were gluten free until i learned how to do things on my own ie pizza, cookies etc. etc. sooo just wondering if anyone had an experience like this?? i am going to contact my local celiac group and see if they offer something like this.

in the beginning i remember being depressed crying in the food isle because i couldnt find anything to eat, starved, hungry and a whole grocery store full of food and not sure if this mayo or lunchmeat was safe, spending hours online and phone. thank-God for this website!!! i recieved tons of support, and ideas, but it was still hard.

how about pushing for a newbies support group in our local areas where we spend one to two weeks taking them shopping and educating them and where to get the good deals??

i think its a great idea, assign new members mentors etc. to help them through the transition. and working with drs. in our local area to let them know newly diagnosed celiacs do have somewhere to turn to for some help and support offer pamphlets and the phone numbers to the local group. i would have loved this.

what do you all think of this idea??

how in the heck can i add a poll to this??
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Gluten is my cryptonite

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Hi Dog,

It's a great idea! Some groups do this now. Some groups will have GF 101 class where they go over the basics and do the shopping thing.

Are you going to be a mentor?
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

superdog · Joined: 01 May 2007 Posts: 116

Al, i am actually signing up as a member to be part of the local celiacs group here this month, i think at the cel-kids meeting. i was hoping to get some thoughts on this idea and hopefully get it rolling, however if my local chapter already does this, i will definitly volunteer and be a mentor.

i am hoping to spend a few days with my kids talking about celiac and what it means to them, and put together my own little book and pamphlets about it in easy to read terms to hand out for free. i looked into buying some books and well to say the least one of them was over 40 bucks- Shocked

we will see what happens, i just wanted some input if anyone would have done this when first diagnosed, unfortunatly i dont know how to poll?? i personally think my life would have been a heck of alot easier and less hungry:)
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Gluten is my cryptonite

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

VERY GOOD!! Be aware - if you go in with a new idea - be prepared to be asked to carry it out Wink

heheheeee

Keep up the good work! I'd love to see your booklet when you get it all done.

Creating a poll - when you create a new topic. Look below where you type in the message. You'll see all the poll information there.

You basically tell it what question you want to ask. Then add the poll answers. You can also tell it how long to run the poll. Most people don't put a time limit on it.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

superdog · Joined: 01 May 2007 Posts: 116

Al, haha, will keep that in mind Very Happy

i am looking forward to being able to do this, as it is something i can do to help out. really excited about it too!!! Very Happy

i will probably do the books and pamphlets and put them on the computer so i can just print them up:) so i will send you a copy of what i do when i am done. i am assuming this takes time, but i am pretty psyched about it so probably much much sooner than later:)

thanks for the poll info, i finally figured it out:) and was the first to answer yes, so right now i stand behind myself 100% with this---hehehehehehe Laughing

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Gluten is my cryptonite

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

One thing to consider about these mentors..they'll need to "follow all the rules" when it comes to label reading, call mfgs, putting items back on the shelf if they are unsure.

If the mentors are not all on the same page, people will get trained differently.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

cruelshoes · Joined: 23 Sep 2005 Posts: 2550 Location: Washington State

I would have loved to have someone show me the ropes when I was first diagnosed. I tried to implement something like this in our group, but it never got off the ground. So I have been doing it on an informal level - giving newbies my phone number, following up with an email full of direct links to the things it took me months to find.

One thing I was concerned about was in deciding who gets to be a mentor. There are celiacs I know that do not follow the GF diet as closely as I think they should. One woman in our group insists that there is absolutely no harm in baking with wheat flour, and "does it all the time and has never gotten sick." I think there needs to be someone completely anal retentive to "train the trainer" so to speak so newbies don't get off on the wrong foot. You also have to have people that are willing to put in the time commitment to do a thorough job. All mentors should be of equal quality and quantity.

I hope it works out for you and your group.
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-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 702 Location: Maine

superdog · Joined: 01 May 2007 Posts: 116

cruelshoes, wow!!! that lady has not a problem cooking with wheatflour, are you kidding me?!?

i guess you can say i am a bit anal... as i did say to the teacher last i talked to her, ok enough of me being anal for now:) my house is totally gluten free, with not even my kids friends bringing over snacks:) and i wont buy anything that says made in a facility that also manufactures wheat products.

as far as the legalities go, i can see your guys/gals point. but umm, i was thinking isnt that why alot of stuff that is gluten free not labeled because they are scared if someone gets sick they could get sued??

it gets irritating with so many people sue happy. i could see why someone saying cooking with wheatflour is ok and the person gets sick....so i totally see the point now.

i would think the group could be overburdened with it if the mentors were not trained.....hmmmmm.....

how about when someone is newly diagnosed at the drs. the group is notified and several people go over to the persons house and welcome them let them know they are not alone, and offer a food basket with items donated from the local frys bashas, trader joes etc. that are guaranteed gf, and give them a run down with printups of where are the good places to shop and what items?? that way the pamphlets can be updated and overseen by a group??

hmmm, darn legalities. still might be a great idea if people are properly trained. i will have to talk to the local group and throw some ideas around and see what can come of it.

how in the heck are we supposed to raise awareness and support each other if everyone is scared of being sued??

train the mentors to be overly anal, and i think we should be ok:) imho:)
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Gluten is my cryptonite

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

The group needs to set standards in what and how the information they give out to people. Something I'm sure they already probably do.

Just because someone has wheat flour in their house, does not mean they don't know how select GF food. Smile

I suspect you are going to find many mixed households. Let me ask you this...would you trust me? We live in a mixed house. I don't personally use wheat flour, but Peg does on occasion.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

superdog · Joined: 01 May 2007 Posts: 116

Al, i would definitly trust you until i clog up your tank:) hehehehe

seriously i know how careful you are so yes definitly.

i just dont let the kids friends bring their snacks because it always ends up on the floor Rolling Eyes

on their hands and all over my sons stuff to much to worry about. i had my friends kids over for a week and the little girl ALWAYS complained of stomach and headaches etc etc, didnt eat much, but by the end of the week she was eating more than all the boys and she said she felt great. the mother said she was going to get her daughter tested, but never did Crying or Very sad

just dont get why some parents dont want to go through the "trouble" for their kids.

anyhow that was waaay ot for me:) sorry. back on topic Very Happy

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Gluten is my cryptonite

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 702 Location: Maine

Perhaps a waiver could be drafted that the person who avails themself of the service could sign. Something to the effect that the group can not be held responsible for unintentional omission of information, changes in food formulations, etc. etc.... Also something to the effect that the person signing realizes that they, ultimately, are responsible for the safe implementation of the GF diet, and that they realize that all information obtained from the service is general in nature. Who knows, a lawyer might tell you that it's not worth the paper it's written on, but it might prevent any issues from arising initially.
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Steph

superdog · Joined: 01 May 2007 Posts: 116

celiacmaine-iac, that is a great idea. this is why i wanted to post on here before i goto a group meeting and talk about it. also wanted to see how many would have used/would use this service.

celiacmaine-iac, thank-you for your input and ideas Very Happy

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Gluten is my cryptonite

The Edifying Conscience · Joined: 29 Aug 2005 Posts: 2442

I voted 'yes' in the poll. While I was not to be the first in my family diagnosed I would have definitely have benefited from having an outsider take me shopping. By that I mean not just pointing out brands that clearly label gluten free ingredients, but also take me to the stores that offer the best selection and most interesting GF products.

On each of our agendas we place a disclaimer. It occurs to me that if one is fearful of litigation then it's probably best to connect newbies with the more experienced person in a more social function. In the case of my group that would be 'cocktail hour' which takes place the last half hour of the meeting. If one does want to have a mentor program I think Al's suggestion is great and any materials that are distributed should have a source of the presented information. A disclaimer placed on the handouts wouldn't take up any space and would be more helpful in protecting the group (from what?) than a release.

soutram · Joined: 02 May 2008 Posts: 34 Location: Montreal, Quebec

I would love it if someone who has gone through similar challenges would take come of their precious time and be there to help me with this transition. I think it is a fab idea.
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Sue
Gluten free, and working on becoming Casein free