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wckdsxyceliac

Just To Find A Celiac Support Group

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Hi All,

I'm newbie to the group. And just had to share my story of trying to find help.

I have a medical insurance that doesn't pay for nutritional or educational training. ( So what if I don't know what I'm doing and need to continually have blood work and testing and repreat doctor visits to try and stay healthy - all because they won't pay for a few training sessions to get me on the right path.

So I set out to find a support group...

3 months after I'm diagnosed ( just diagnosed may/'08 after 2+ years of hell) The GI doctor who gave me the diagnosis ( who now that gave the dx has dropped me like a lead brick so I've just been free falling.) I called his office once again for help and they mailed me this support group flyer that they dug up. This was in August.

Montoursville, PA Geisinger office every 3rd Wednesday - monthly.

I'm SOOOO excited. I'm done work at 4:30pm it doesn't start until 6p - I live completely opposite direction so I just mill around for 1 1/2 wasting time. Go in this office, no one knows anything "but they alwasy have different support groups" and just go have a seat in the corner and people will be arriving soon. AT 6:30 p someone comes out to tell me that they just heard I was sitting there and that the meetings had been discontinued in March or May /08.

This women went to find out if she could find where it was moved to. As I'm still sitting all by myself. She asks everyone in the office, calls a patient from there that use to go to the meetings, calls a Doctor that was on vacation "but may know something" and then calls the office manager ( who was in middle of supper). ... No one knew anything. And the final straw was she went to check one more thing only to never return.

So I go home disgusted and none wiser.

Over a month later a coworker sees an ad in the papaer about a celiac meeting at a church in Montoursville, PA - monthly every 3rd Wednesday. So this past Wednesday I once again leave work at 4:30p mill around forever go to this church and begin asking anyone and everyone where is it,who, what..... No one knows anything, never heard of it, go ask this person, nope don't know - go ask this person - nope go ask that person.

So I'm still right where I started.

The next day I called a number that was I guess in the newspaper ad?? don't know where it came from. Ends up it was the lady who holds the celiac support groups.

The meetings at the church had stopped in August. She tells me that she canceled the ad 2 weeks ago and I had to politely tell her that we're now in the middle of October and the meetings ended in August..??

But now she tells me that there's a meeting at the Evan Hospital Lewisburg, PA , 1st Tuesday monthly. Others were both cancelled becasue no one ever showed up, and I completely understand her delima (sp?) What has happened with the meetings has just been a luck of the draw and my luck has always been OMG badddd.

My problem is the distance. I live in rural Lock Haven. It's an hour drive to Lewisburg. It was bad enough for the other 2 places. Plus now I'm massively gun shy on the support group thing.

Life is a funny & peculiar thing isn't it. Oh well, on to another day.

Thanks for listening all,

Tracey

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I am so sorry to hear that you have gone through this.

We have a support group here in Temecula, CA. Sometimes there are only a few of us and then other times a lot of people show up.

The best thing you can do at this point is read on all the posts here, there are some on this site that can help you. But like I said, I suggest you read through some of the posts first. You can also use the internal search engine for this site and it will bring up posts pertaining to your keyword.

You will learn how to eat again and cook. Just remember anyone can cook and if it doesnt come out the way you like it, try again =) trust me I tried to make pancakes once and it wasnt very good at all but I tried again.

You can also ask your doctor to run blood test for vitamin defencies, etc. You wont need a nutrionist for that. I still need to do that. Just make sure you eat lots of fruit and veggies =)

If there is anything I can ever help you with please pm me. I also have a huge lists of websites that I have found to be very helpful.

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Sorry that you had such a hard time. I ran into the same thing trying to find support groups for other things. Our celiac disease support group is very active, but like most others is run completely by volunteers who have lives and families. We have a group of older veterans who always come out and by doing so help keep it going. The younger ones come and go because they get alot of info elsewhere-internet etc. and because the evening time slot is hard for those with school age kids. Those who are officers do it year after year and keep doing it because there is a need but they would LOVE to hand over the reins to someone else. Run the way ours is, it is alot of work for the president. If you can make it once(calling ahead to make sure) maybe you could find someone else from your area to share a ride with. Otherwise, this forum is a good source of support and info. Hope you stick around. :)

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