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

Post Here To Join Celiac.com's Online Support Group With Live Chat Meetings! (Free)


Scott Adams

Recommended Posts

Scott Adams Grand Master

This is the topic for the new "Celiac.com Online Support Group". We hold regular monthly online meetings in the forum's "Live Chat" area (see link in top menu):

 

To join: Create a forum account, then make just post in this topic--be sure to click "Follow This Topic" at top right.

 

Our goals:

  • To help our members adjust and deal with being gluten-free;
  • To help our members adjust and deal with the effects of celiac disease and gluten sensitivity;
  • To provide a friendly and convenient way for our members to meet and exchange information online, including regular live chat support group meetings.

Next Meeting Notice:


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



Celiac.com Sponsor (A8-M):



  • Replies 81
  • Created
  • Last Reply
mendylou Rookie

 

I've been thinking about starting a "Celiac.com Online Support Group" which would hold regular online meetings here in our "Live Chat" area? I am hoping there are others out there who might be interested. Please let me know if you are:

  1. Interested in joining such a group;
  2. Interested in helping to lead or otherwise help out with such a group;

 

Iwould be interested in joining an online support chat group

Celtic Queen Explorer

Would be interested in joining.  Unfortunately don't have the time to lead.

moosemalibu Collaborator

I would be interested in joining the group. I don't know about being a lead, though. I'm new to the celiac disease game. ;)

  • 2 weeks later...
Scott Adams Grand Master

I nominate Jamie (moosemalibu) to help lead our group. Also, I am starting to promote this more, so hopefully we'll have more folks join by posting here.

GF Lover Rising Star

Hi Scott, Did you have a particular day and time in mind?  Weekly, Monthly?

 

Colleen

moosemalibu Collaborator

I nominate Jamie (moosemalibu) to help lead our group. Also, I am starting to promote this more, so hopefully we'll have more folks join by posting here.

 

Haha - I can certainly try. Do we have organized agenda's/topics to discuss? How do we want to organize it? A date/time and then just have at it. What about a journal seminar? Like - read this article and then discuss kind of thing...


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

All good questions...at the moment I am thinking of using this thread as the ongoing discussion thread, and having one meeting per month, at least to being. If members later decide they want to meet more often that will also be possible, as the chat area is always open.

 

It may be too early yet to formulate the first meeting's agenda, as we really don't have enough members. Hopefully this will change soon as I am ramping up promoting this new group. I think we need at least 20 members before we can have a meeting.

GF Lover Rising Star

Scott,  would you like interested members to propose topics that interest them?  May help you plan agendas. 

 

Colleen 

Scott Adams Grand Master

Yes, this would be best I think. The first step is to see if there is enough interest in the idea of a "Celiac.com Online Support Group."  Does this sound like a good idea for a name?

Scott

 

Scott,  would you like interested members to propose topics that interest them?  May help you plan agendas. 

 

Colleen 

moosemalibu Collaborator

Forgive me.. maybe I misunderstood the concept. Is this a LiveChat functional group or a topic posting group? Either sounds great - but the livechat would be neat. 

 

The name sounds great!

Scott Adams Grand Master

The group will have both--this thread for posting, and live chat meetings (see the "Live Chat" link at the top of the board). So all meetings will be live, and participants can communicate in real time. I believe the live chat meeting content can also be archived. 

GFinDC Veteran

Once a month sounds possible.  I'm in.

RevKate Newbie

I'm newly diagnosed, and still adjusting (healing and fighting leaky gut)...unfortunately there are no Celiac support groups locally so my hubby and I are muddling through this process on our own. We live in a small community with very limited grocery shopping options, etc. so any support online or otherwise would be greatly appreciated...

 

  • 2 weeks later...
jackiejasbedt65 Newbie

I would greatly appreciate a online support group, as the small town I live in has no group here.  So I'm in.

Scott Adams Grand Master

We've got the start of a group...but we do need more members to begin. I'll keep promoting it the group.

SkyBlue4 Apprentice

I love the idea of an online support group!

tonalynn Explorer

This sounds like a great idea! Count me in!

julissa Explorer

I've been away from here for a while, but I am interested as well. thanks..

StephenB Newbie

Count me in.

lcdconsumer Newbie

We've got the start of a group...but we do need more members to begin. I'll keep promoting it the group.

Please count me in also.  ABSOLUTELY HEALTHY 59 year old, certified fitness trainer, suffered a heart attack September 30, 2012 resulting in 8-stents!  Sickness followed for 7-months by 35+ pounds of uncontrolled weight loss.  Blood test resulted in severe celiac sprue (redundant).  I feel like the only one in the world suffering from this.  I have numerous challenges, not the lease of which is the fact that we cannot determine how much heart medicine my body is actually absorbing.  Anyway, THANK YOU, THANK YOU, THANK YOU for providing an up-to-date communication vehicle for those of us with this crazy disorder.  Prayers go out to everyone!

Googles Community Regular

I am interested. I would be able to make the on line chat as long as it isn't when I'm working (which is way too many hours.)

Sue B Newbie

I would be interested.  I am always interested in up to date information.

 

BZBee Apprentice

I'll join, there aren't any local support groups in my area.

Scott Adams Grand Master

Excellent...it is good to see more people joining. For anyone who can't attend a live meeting this thread will act as the non-live discussion area, so everyone can basically interact here between live chat meetings. If we can get 10-20 more members we can plan our first live chat meeting.

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. - Theresa2407 replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

    2. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

    3. - Scott Adams replied to chrish42's topic in Doctors
      6

      Doctors and Celiac.com

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    5. - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Have Tru Joy Sweets Choco Chews been discontinued??

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,261
    • Most Online (within 30 mins)
      7,748

    Joanne Ham
    Newest Member
    Joanne Ham
    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

    • Theresa2407
      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
    • trents
      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
×
×
  • 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.