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Support Group
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:rolleyes: If anyone knows of a support group in the Seneca, Anderson, Greenville area of South Carolina please let me know---or if anyone is looking to start a support group in this area of South Carolina I would be very interested in helping or starting one. Thanks
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:rolleyes: Thank-you Stacie I'll look into both of these Judy Naradowski
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Hi Judy. I received this email from another online support group and thought I would pass it on to you:

Support Group - Columbia, South Carolina

Celiac Disease Support Group meeting on Saturday at 2:00pm

(Columbia) Jan. 29, 2004 - Imagine not being able to eat anything containing wheat, rye or barley. The protein gluten is found in those grains, and people with Celiac Disease can not have anything with gluten in it.

Celiac Disease is often misdiagnosed as Irritable Bowel Syndrome or Chronic Fatigue Syndrome.

To learn more about Celiac Disease and how it could be affecting you, you're invited to the Celiac Disease Support Group meeting on Saturday at 2:00pm.

It's at the Women's Breast Center on Sumter Street at Palmetto Baptist Hospital. A special speaker from California will be there

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Hey!

I live in Greenville, SC with celiac disease. I also wish there was a support group. Though I am only 14 years old, my mom knows as much about celiac as I do if you would rather communicate w/ her. So, if you have any questions or suggestions having to do with local restaurants, foods, etc. I may know the answer or I can help you. And vice versa. :D

-Ginny

P.S. What is your favorite restaurant?

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Hi I am from Cedar Rapids, Iowa, and I diffenitly need a support group. If only I could find one person to talk to. I am so confused, and getting no where with the Doctors and Dietians in this area.

I have been doing very well with the gluten-free diet for the past 2 months. Now the diarhea is back, and stomach is feeling bloated again. I know this must mean I am getting gluten somewhere, but haven't been able to find the source.

I am knew to this site, and not sure how to navigate it. I have posted a couple of times, but have seen no reply, and don't even see my posting.

I keep reading everything posted, and I find satisfaction in this, knowing I am not alone. I am so feed up with the Doctors responses!

T-Bell in C.R.

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Hi T-Bell

Here is a list of support groups in your state:

Iowa

Carroll - Resource:

Contact: Lynne Humphrey

121 S. Maple St.

Carroll, IA 51401-3123

Tel: (712) 792-5866

E-mail: hump@win-4-u.net

Cedar Rapids - Resource:

Contact: Betty Rinderknecht

P.O. Box 293

Van Horne, IA 52346

Tel: (319) 228-8428

Davenport - Support Group

Contact: Becky Wentworth

Quad City Celiac Group

4846 Armil Place

Davenport, Iowa 52806

Tel: (563) 391-2968

E-mail: wentworth@netexpress.net

Dubuque - Resource:

Contact: Kay Boeckenstedt

1742 330th Ave.

Dyersville, IA 52040

Tel: (319) 875-8747

E-mail: boeckenk@nicc.cc.ia.us

Iowa City - Support Group

Contact: Sarah Berke

Iowa City Celiacs

735 Michael St. #32

Iowa City, IA 52246

Tel: (319) 337-9521

Oskaloosa - Resource:

Contact: Bonnie Comstock

804 South 9th

Oskaloosa, IA 52577

Tel: (515) 673-7580

E-mail: coc@se-iowa.net

Tipton - Support Group

Contact: Jacey Drollinger

Living Free Celiac Disease Support Group

Tipton, Iowa 52772

Tel: (319) 886-6255

E-mail: jdrollinger@msn.com

Waverly - Support Group

Contact 1: Betty Bast

Eastern Iowa Celiacs

2028 190th St.

Waverly, IA 50677

Tel: (319) 352-4740

Contact 2: Kay Boeckenstedt

1742 330th Ave.

Dyersville, IA 52040

Tel: (319) 875-8747

E-mail: boeckenk@nicc.cc.ia.us

Contact 3: Joanne Eggleston

E-mail: ZEJG11A@prodigy.com

Waterloo - Support Group

Contact: Diana Hartman

Waterloo & Cedar Falls Celiacs

700 W. Ridgeway, Lot #604

Cedar Falls, IA 50613

Tel: (319) 277-0963

E-mail: ZEJG11B@prodigy.com

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Stacie,

Thank you so much for the list. The group in Iowa City is not far from me. I will contact them.

I know Iowa City has one of 2 Celiac Doctors in the state of Iowa also.

Thank you again

Theresa

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    • Hi, I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps
    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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