Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Bad Support Experience


luvs2eat

Recommended Posts

luvs2eat Collaborator

Last year, I signed up for a seminar for Celiacs given by our local hospital. The room was pretty darn full of other Celiacs and I was so looking forward to getting some support and recipes.

The woman conducting the seminar gave out a 5-page list of "Not Alloweds" and I thought to myself... now how many who've been diagnosed with celiac disease hasn't gotten a list of foods to avoid???

Anyhow... the woman spent an hour talking about her feng shui business and how we'd all feel better if we feng shui-ed!! She gave us some pretty crappy gluten-free brownies and I found the folks in the audience knew way more than this gal leading the seminar!!

I skipped at half time and went home and wrote a letter to the hospital. They refunded my money and agreed that the leader wasn't what they were hoping for!

I'd love to find a local support group in eastern PA.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

go to your search mode and type in: celiac support groups in pennsylvania ---you should get a listing of all the groups in pennsylvania----deb

Guest jhmom

Sorry to hear of your experience at the meeting ;)

Here is a list of groups in PA, not sure if any of these are close to you, but there could be some new ones not on the list, you may have to call around to see.

Pennsylvania

Bethlehem (Allentown area) - Support Group

Contact: Kate Panagia

4665 Stafford Avenue

Bethlehem, PA 18020

Tel: (610) 614-0368

E-mail: kapanagia@yahoo.com

Danville - Support Group

Contact: Elaine M. Jeffreys

ACS Danville City Support Group

R.d.#6 Box 143 C

Danville, PA 17821

Tel: (717) 275-0654

Carroll Valley (Gettysburg, PA Area) - Support Group

Cheryl Hutchinson, RN

Carroll Valley Celiac Support Group

22 Ski Run Trail

Carroll Valley, PA 17320-8537

E-mail: hutchjc@earthlink.net

Erie - Resource:

Contact: Rebecca Markle

1010 West 35th Street

Erie, PA 16508

Tel: (814) 864-3341

E-mail: thebec@erie.net

Harrisburg - Support Group:

Contact: Linda L. Weller

GIG of Harrisburg

P.O. Box 15606

Harrisburg, PA 17105-5606

email: Harrisburg@gluten.net

Tel: (717) 520-9817 x2

Indiana - Support Group

Indiana Regional Medical Center Celiac Support Group

Contact: Brenda Shilling, Director of NFS

Indiana Regional Medical Center

Indiana, PA 15701

E-mail: bshilling@indianarmc.org

Lewistown/Southern PA - Resource:

Contact: Rex Sumerland

RD 2, Box 189

McVeytown, PA 17051-9618

Tel: (717) 899-6482

E-mail: ras@DD1.ARL.PSU.EDU

Mount Pleasant - Support Group

Mount Pleasant Celiac Support Group

Contact: Vicky Vrabel

616 West Main Street

Mount Pleasant, Pennsylvania 15666

Tel: (724) 542-9745

E-mail: vvrabel@charterpa.net

Philadelphia - Support Group

Contact: Laura Sposito

ACS Whoo Sprue Group

1211 Tree Street

Philadelphia, PA 19148

Tel: (215) 336-5004

Philadelphia - Support Group

Contact: Phyllis Brogden

Greater Philadelphia Area Celiac Sprue Support Group

6318 Farmar Lane

Flourtown, PA 19031

Tel: (215) 836-7518

E-mail: ebrogden@EROLS.COM

Pittsburgh - Support Group

Contact: Elsie Janthey

Pittsburgh East Area Celiac Sprue Support

204 George Lane

Pittsburgh, PA 15235

Tel: (412) 823-2010

Contact 2: Lois Kosoglow

Tel: (412) 744-2356

Contact 3: Ruth Masengill

Tel: (412) 327-5564

Pittsburgh - Support Group

Contact 1: Lorraine Weaver, Treasurer and Membership

Greater Pittsburgh Celiac Sprue Support Group, Chapter #48 CSA/USA

1446 Greenbriar Court

Library, PA 15129

Tel: (412) 835-4983 or (412) 833-9507

E-mail: dweaver1@compuserve.com

Contact 2: Theresa Fogle

Tel: (724) 335-4892

E-mail: tfogle1@aol.com

State College - Support Group

Contact: Cindy Sunderland

Central Pennsylvania Celiac Support Group

RD 2, Box 189

McVeytown, PA 17051-9618

Tel: (717) 899-6482

E-mail ras@DD1.ARL.PSU.EDU

Wilkes-Barre/Scranton - Support Group

Contact: Pattie Kupetz

CSA/USA Wilkes-Barre/Scranton Celiac Support Group

17 W. Sunrise Drive

Pittston, PA 18640

Tel: (570) 602-7459

E-mail: kup552@epix.net

Wynnewood - Resource:

Contact: Rita M. Herskovitz

52 Rockglen Road

Wynnewood, PA 19096

Tel: (215) 642-9351

York - Support Group

Contact: Kathie Cavanagh

Gluten Free Health Group

18 Valley Road

Jacobus, PA 17407

Tel: (717) 428-3859

e-mail: kcavanagh@wellspan.org

stef-the-kicking-cuty Enthusiast

Hey thanks, that helped me too. :D

Stef

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,297
    • Most Online (within 30 mins)
      7,748

    Struz
    Newest Member
    Struz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Gunni
      Hey Talia4, I still try to stay on the lower end of carb intake but things are way easier for me these days. It really looks like a digestive issue at the core in my case   As supplements with meals I'm now taking 3-4x 650mg betaine hcl without pepsin (to handle larger doses) 1-2x Doctor's Best digestive enzymes   And daily Share Pommelozzini. This has helped my digestion immensely with carbs and fats. I'm way more tolerant of larger meals and things are a lot easier. Happy to hear any progress or findings on your end as well though!  
    • trents
      I think most of us, when we first got our diagnosis, imagined that going gluten free would be the magic the bullet that would restore us to perfect health. We soon find out that it usually isn't quite that simple and that celiac disease has long fingers.
    • Celiacsugh
      Thanks! I still have much to learn, I'd hoped going gluten-free would be a magic bullet and I'm learning my system is still very sensitive which is overwhelming and discouraging at times. Thanks for the yogurt tip! There is comfort in knowing that this is common during early healing and I'm not alone! 
    • Celiacsugh
      Thanks so much for the response. Are you usually able to pinpoint a trigger when you get the pain again? What I didn’t share in my earlier post is that I also usually eat out on weekends (though I share celiacs/needs to be gluten-free) and I’ve also been under a lot of stress lately in my personal life. While I’m speculating that it’s the wine it could certainly be a number of things. Do you ever notice the pain more when you are stressed? Learning so much about the brain/gut connection and celiacs. Thanks, there is comfort in hearing others have experienced similar symptoms. 
    • Raquel2021
      This was my main symptom. I still get it from time to time. Also feels like a burning pain on the upper abdomen. I think the wine could definitely cause the pain to be worse. There are do many things I still can't eat.
×
×
  • Create New...