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

California Support Group


annapumpkin

Recommended Posts

annapumpkin Newbie

Hi all,

I am looking to start a support group in my area because from what I am seeing we dont have one for 2 hours in each direction and I know there is a need. My problem is, is that I have no experience with this besides leading hospital volunteer groups. So I am wondering if there are any pointers you all can give me or show me the ropes so to speak. I figure if no one else will start one I will do it myself, im sick of waiting for someone else to do it. (5 years) Thanks.

-cheryl


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
Hi all,

I am looking to start a support group in my area because from what I am seeing we dont have one for 2 hours in each direction and I know there is a need. My problem is, is that I have no experience with this besides leading hospital volunteer groups. So I am wondering if there are any pointers you all can give me or show me the ropes so to speak. I figure if no one else will start one I will do it myself, im sick of waiting for someone else to do it. (5 years) Thanks.

-cheryl

You can contact the Celiac Disease Foundation at www.Celiac.org. Deborah will be glad to set you up with a starter packet. :)

Great idea!

tom Contributor
Hi all,

I am looking to start a support group in my area .. .

What part of CA are you in??

I'd be up for a group but I'm in San Jose.

annapumpkin Newbie

Thanks momma goose...ill do that today. and sorry tom im in Bakersfield California...the nearest support groups I have found are at UCLA or Fresno. :(

pinkscooby6 Rookie

Do you know of any support groups in San Diego, CA? It sounds like you have done your research, and maybe you would know of a site I could go on to find a group in my area.

Lisa Mentor
Do you know of any support groups in San Diego, CA? It sounds like you have done your research, and maybe you would know of a site I could go on to find a group in my area.

Open Original Shared Link

Maybe this will be a start :D If these don't work for you, let us know and we can "hook you up".

ownafish Newbie

Cheryl,

I live in Visalia. I did find a name and number of someone in Bakersfield that has a support group.

Gigi Sorenson

805-325-2339

Internet:

Gigi Sorenson, VLSorenson@AOL.com

Owen


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



Celiac.com Sponsor (A8-M):



annapumpkin Newbie

Hi Owen

thanks for the information...unfortunately, the phone number and email address are no longer correct. I did have a listing with her name on it but it was 5 years old and the support group is no longer running. <_< Thanks for trying though :D

Momma Goose....i emailed Deborah and was never given a response back...and that has been since you posted your last comment. :blink:

-cheryl

annapumpkin Newbie

YAY!!!! I heard from Deborah and they had no listing for a Bakersfield Support Group...so I signed up! :D So I have to get through some paperwork but I hope to start a Bakersfield Support group here shortly! So everyone in the Kern County area you are MORE than welcome to come! I am also going to be going to the Celiac Foundation convention on May 3d. My first Convention! Im a little (just a little :rolleyes: ) excited. Thanks for the help guys... and hope to hear from you if your in my area!;)

-Cheryl :P

  • 4 weeks later...
skitube Newbie
What part of CA are you in??

I'd be up for a group but I'm in San Jose.

I'm also in San Jose and just starting on this journey. Is there any activity in the area?

Bill

Lisa Mentor
YAY!!!! I heard from Deborah and they had no listing for a Bakersfield Support Group...so I signed up! :D So I have to get through some paperwork but I hope to start a Bakersfield Support group here shortly! So everyone in the Kern County area you are MORE than welcome to come! I am also going to be going to the Celiac Foundation convention on May 3d. My first Convention! Im a little (just a little :rolleyes: ) excited. Thanks for the help guys... and hope to hear from you if your in my area!;)

-Cheryl :P

Glad to hear that you are getting started. I kinda feel like it's great to "pay it forward" and the CDF and a local support group is a great way to do that.

Let us know about the Convention. I have never been to one and hopefully in the future I will be able to.

tom Contributor
I'm also in San Jose and just starting on this journey. Is there any activity in the area?

Bill

Hi Bill,

This group Open Original Shared Link does a near-monthly potluck, but I haven't been able to make it yet.

  • 2 months later...
Stephielane Newbie
I'm also in San Jose and just starting on this journey. Is there any activity in the area?

Bill

I am from the San Jose area too, just diagnosed about 6 months ago. If anyone knows of a local support group, please let me know!

Thanks,

Stephanie

tom Contributor
I am from the San Jose area too, just diagnosed about 6 months ago. If anyone knows of a local support group, please let me know!

Thanks,

Stephanie

Hi Stephanie,

There's Open Original Shared Link w/ ppl in the South Bay, Peninsula and Santa Cruz/Scotts Valley.

I haven't made it to one of their near-monthly potlucks yet, but hope to soon.

I get a daily email of the prior day's posts. Some days there are 2 or 3 posts, some days a dozen.

Mostly it's about useful local info - restaurants, stores, new products.

[Edit: oops :lol: I just saw that I wrote the same thing 2 posts up :chagrinedface: :lol: ]

Archived

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

  • 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 replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • 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
      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
      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
      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
      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
      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.