Jump to content

  • 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

Anyone Out There?

Claire

By Claire
in Introduce Yourself / Share Stuff

Recommended Posts

Claire Collaborator
Claire
Posted

I am looking for a support group somewhere in the area between Frederick, Md. and Harrisburg, PA. Those places would be the ultimate distance.

I live in southern PA - about a half hour from the Maryland border.

Thanks for info. :)

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Hey

I'm near Frederick and myself as well as a friend of mine have been thinking of putting together a celiac group around the area so maybe we could all get together.

Claire Collaborator
Claire
Posted
  • Author
Hey

I'm near Frederick and myself as well as a friend of mine have been thinking of putting together a celiac group around the area so maybe we could all get together.

<{POST_SNAPBACK}>

Thanks for reply. As i said, the cities named are the farthest out I could possibly go. Let me know what you are up to. :)

Mahee34 Enthusiast
Mahee34
Posted
Thanks for reply. As i said, the cities named are the farthest out I could possibly go. Let me know what you are up to.  :)

<{POST_SNAPBACK}>

I live in the battlegrounds.....but currently am away at graduate school, should be back in that area on and off throughout the next year though

Claire Collaborator
Claire
Posted
  • Author
I live in the battlegrounds.....but currently am away at graduate school, should be back in that area on and off throughout the next year though

<{POST_SNAPBACK}>

Hello there. Thanks for reply. Is there a Group in your area?

  • 2 weeks later...
Mahee34 Enthusiast
Mahee34
Posted
Hello there.  Thanks for reply.  Is there a Group in your area?

<{POST_SNAPBACK}>

not that i'm away of, yet anyway

Mom22 Apprentice
Mom22
Posted

There is a support group in Gettysburg, PA that meets twice a year and has a meeting coming up on November 7th, I believe. We have about 40 people and the chairwoman contacts numerous gluten-free companies and gets an awesome abundance of gluten-free samples. I usually come home with several shopping bags of free food. Meetings are on Monday nights. There is also a group that meets in York twice a year, but theirs is on a Friday night. Since they are much larger (100+), they are able to get some great speakers to come in, i.e. Dr. Fasano. Camp Hill, PA also has a group. If you want more information, just e-mail me: prock@pa.net

Mom 2 to 2

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

Celiac.com Sponsor (A8-M):


Mahee34 Enthusiast
Mahee34
Posted
There is a support group in Gettysburg, PA that meets twice a year and has a meeting coming up on November 7th, I believe.  We have about 40 people and the chairwoman contacts numerous gluten-free companies and gets an awesome abundance of gluten-free samples.  I usually come home with several shopping bags of free food.  Meetings are on Monday nights.  There is also a group that meets in York twice a year, but theirs is on a Friday night.  Since they are much larger (100+), they are able to get some great speakers to come in, i.e.  Dr. Fasano. Camp Hill, PA also has a group.  If you want more information, just e-mail me:  prock@pa.net

Mom 2 to 2

<{POST_SNAPBACK}>

wow, i live in gettysburg and i've never heard of these groups! thanks for the info!!

Claire Collaborator
Claire
Posted
  • Author
wow, i live in gettysburg and i've never heard of these groups! thanks for the info!!

<{POST_SNAPBACK}>

Thanks so much for this reply. I started this topic and am most grateful to hear from you. I live in Chambersburg, PA - about an hour away from Gettysburg. I will contact you. Claire

Lauren M Explorer
Lauren M
Posted

Another vote for the G-burg Support Group!

Hey Mom22, it's me Lauren, I finally found this site :)

Don't think I'll be able to make it to the next meeting because I have class in Philly that night... but I'm sure my Mom will be there in my place. The G-burg group really is great - they were my saviors when I was first diagnosed! I definitely recommend going to the upcoming meeting. Let me know if you have any questions.

- Lauren

Mom22 Apprentice
Mom22
Posted

LAUREN!!!

Glad to see you found this site. Miss you and will catch you at the meeting in the spring, but will also send you an e-mail. I hope you are doing well and look forward to chatting with your mom. Take care!!

P.S. You won't believe how big the kids have gotten.

Mom 2 to 2

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
    2. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    4. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.