Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Attended My First Support Group Meeting.
0

10 posts in this topic

:rolleyes:

It was to be my 5 year outing. That time when Mom goes to do her own thing. I was finally going to find some celiacs with live faces to share stories with. :) :) :)

I figured out who would take care of the little ones. I scrambled to make a special homemade pizza which would be done before I left. This was my first pizza in a long while since crust, tomato sauce and cheese don't work.

Finally the pizza was done, but alas it was past time to leave. I scrambled to change my dress for the third time. Nobody can go to a celiac support group with garbanzo flour puffing from their dress!

Trying to eat the pizza while driving was challenging. The crust didn't hang together and blobs of mango fell on my clean dress. Hey, I discovered a new glue for non-gluten stickers on fruit. I used my one thin napkin in my effort to erase all traces. The pizza was delicious and just what I needed to fill the craving. :P

I finally arrived to the meeting 10 minutes late. I wondered whether I should buy a drink to bring in, or just hurry up and get in there. I washed my hands knowing that you can't go to a Celiac meeing with pizza remains on them. I pondered about the hot pepper on my breath, but I had done all I could to solve that. I swished my water around my mouth and even pulled apart a ginger and a fennel capsule and swished them around too.

I was at a Natural Food Coop. I checked the board and it still said the Celiac group would be there. I popped open the door of a nearby room. That couldn't be the right room I said aloud. It was dark inside. I asked some employees where the meeting was. They hadn't seen anyone go in yet. Well, are they usually late I inquired? They shrugged. We checked the schedule board, and no worry, the meeting was every third Tuesday of the month. They took me to the bulletin board and showed me an 8 1/2 X 11 paper which advertised the group. Everyone is welcome it said at the bottom. I guessed that was me.

I decided to shop while I waited. I kept watching for a long blond haired lady that was the group leader they said. I completed my shopping, and called the goroup leader's number which was on the bulletin board. There was no answer, but for a machine. I stammered out my name and number and something about having had one oppertunity to come to the meeting for Celiacs. "Du uh uh, " I said at one point.

Finally, I considered the story of the Celiac I encountered. She was dressed in a flowery, flowing dress and an orange shirt. She was dressed like me! She had the test results that confirmed she was a Celiac and a doctor's report to tell her story. That was just like me! Infact, her story, matched my story. It was me! There was no doubt about it; I needed to go home and write about it on the forum.

I arrived home. Two people walked up to the van, obviously curious how it went, I thought. They opened the back hatch and took out two bags of chicken feed and walked off with them. Oh, well I'll do the forum then. But I found my daughter was talking to her sister on Skype and could not be interupted. We then started an Andy Griffeth Show. I figured I could write when it was done. As soon as the show was over my husband jumped up and ran to the computer to work on my son's calculus class. He has his own computer which he nearly always used. <_< I decided to wash the dishes.

Well, the dishes got done and it was past my bedtime. But I had the energy to finish my story tonight. I walked over to the computer only to discover that it had been turned off. Now, you must know that we don't turn it off. We have worn computers out by turning them off and on, so we leave it on. Our computer gets stuck if we turn it off, and the best solution is to let it grind for a long time. I went up to bed. Tomorrow is another day I reminded myself.

2

Share this post


Link to post
Share on other sites


Ads by Google:

Thank you for sharing this story with us :) We are happy you are here :D

1

Share this post


Link to post
Share on other sites

Sorry to hear there wasn't a better turn out for the support group. After all of your planning and getting away for some "you time" it had to be pretty disappointing?

When first DXed I looked for a group in my area and found there had been one, but they sort of disbanded and they no longer got together. I was hoping for a nice sized group that I could get recommendations for Celiac savvy Dr.s from, but it was not to be.

We'll be your support group, and what's nice is you don't have to wait until a certain night or time, or day of the month. You can come here anytime you want and somebody will be here. You can even visit in your PJs. I think your breath smells fine by the way. ;)

1

Share this post


Link to post
Share on other sites

What a great story! I am sorry the meeting did not turn out to be where it was supposed to, I hope you'll share the "rest of the story" at some point! And you did get to meet another celiac with life story similar to yours. Divine appointment? :)

1

Share this post


Link to post
Share on other sites

I know the disappointment. The only group I found was a group of mothers trying to figure out lunches and snacks for toddlers. I am rapidly romping through my 60's, so that was not for me. I would love to find a group of adults to have a cocktail with as we discussed grown-up Celiac.

0

Share this post


Link to post
Share on other sites




Hmm, well it was nice to get out of the house for awhile? And that big gluten-free cake they made for you while you were gone sure must have hit the spot. And those homemade gluten-free cookies, yum-yum!

Sorry it wasn't a little more meeting-ey. Around here, one of the local groups meets at a Whole Foods sometimes. Whole Foods is very supportive of celiacs around here at least. They might know of a group that you could meet with, or even host a group meet, I hope you have a Whole Foods? You might know it by it's other name, Whole Paycheck.

Was the meeting part of a national organization or a local non-affiliated group? If you were near DC I'd gladly meet with you or take you to one of the meetings around here. :)

0

Share this post


Link to post
Share on other sites

At home they didn't eat much pizza, so there was plenty for lunch-and again tomorrow. I was thinking how I could serve the same thing for days and days if I make something they don't like. That has been happening quite a bit for some of them, but what can I do? :P Desperate people can eat anything and even enjoy it I say.

The nearest Whole Foods is in Minneapolis about 1 1/2 miles away. However, there are several co-ops around 30=45 minutes away. I am really not much of a group person anyway. I hope to just find a couple of friends and to do the forum.

.

0

Share this post


Link to post
Share on other sites

You were trying to go to a support group in Minneapolis? Do you mind me asking where it was (even though it didn't pan out)

I love my co op in Minneapolis. I don't know where you are, but this co op is close to downtown.

It's good you have a WF by you. That was my store until I found the co op.

0

Share this post


Link to post
Share on other sites

You were trying to go to a support group in Minneapolis? Do you mind me asking where it was (even though it didn't pan out)

I love my co op in Minneapolis. I don't know where you are, but this co op is close to downtown.

It's good you have a WF by you. That was my store until I found the co op.

Actually, I am up North in the Princeton, Milaca area. The meeting was in St. Cloud. I did mention MNPLS though.

I am a frequent shopper at Lakewinds Minnetonka and Valley Natural Foods. I also visit Linden Hills coop and once I found the Wedge, and I infrequent many coops throughout MN. So maybe I will visit yours soon. One never knows where I will be when I get lost after visiting Como Park! I haven't been to the Whole Foods Warehouse in the area.

If you are interested in a support group, I would not be surprised if most of the coops have them.

0

Share this post


Link to post
Share on other sites

I shop at Seward which is really the same diff as the Wedge. But that's a huge trek for you. But honestly after 2 years of this diet, and traveling around the US and England, I have to say the Twin Cities are about one of the best places to be gluten free. I'm sorry you didn't find the support group, but I got the most help on this forum. Seward Co op does have a lot of classes about gluten free cooking but I haven't done any of them because we are also dairy and corn free, and avoid a lot of the flours and soy. So...I taught myself to cook. But it's nice that there is an awareness for sure.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,352
    • Total Posts
      920,503
  • Topics

  • Posts

    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,417
    • Most Online
      1,763

    Newest Member
    Suzette Porter
    Joined