Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Post Here To Join Celiac.com's Online Support Group With Live Chat Meetings! (Free)
0

82 posts in this topic

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:

0

Share this post


Link to post
Share on other sites


Ads by Google:

 

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

1

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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. ;)

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

 

Colleen

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

 

Colleen 

0

Share this post


Link to post
Share on other sites

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 

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

Once a month sounds possible.  I'm in.

0

Share this post


Link to post
Share on other sites

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...

 

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

I love the idea of an online support group!

0

Share this post


Link to post
Share on other sites

This sounds like a great idea! Count me in!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.)

0

Share this post


Link to post
Share on other sites

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

 

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,644
    • Total Posts
      918,442
  • Topics

  • Posts

    • Question on posting
      I made an informative video for Celiac Awareness Month that demonstrates how small 20ppm is. Am I allowed to post a vimeo link? Thanks!
    • Celiac Awareness on NBC Nightly News
      http://www.nbcnews.com/nightly-news/video/celiac-disease-affecting-millions-of-americans-often-goes-undiagnosed-692131907739   This was on last Tuesday. So happy that a popular national news program is spreading good information!
    • The US Preventative Services Task Force needs our help - tell them why Celiac screening is important!
      I am so angry. I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives. This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms (http://www.reuters.com/article/us-health-celiac-screening-idUSKCN0XU2G6?utm_content=buffer3ed50&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer) First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few. Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”: asthma bladder infections dental problems dandruff high blood pressure headaches blurred vision leg cramps back pain pale skin brittle nails acne bad bread mood swings ADD Anxiety Depression a short temper night terrors panic attacks irrational anger sinus pressure Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test. This is why I always say – You cannot know that you do not have Celiac Disease until you get tested. “One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.” WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future. “Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.” I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms. This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence. “The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.” This brought me to the USPSTF website. In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response: False positive – there are rarely false positives Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test? Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work. “Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” “– I’m glad that you think my life is so terrible. “Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications” – I’m not going to risk getting cancer, are you??? The USPSTF is taking public responses to their draft, all of which must be submitted by May 30th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it. This could be the most important thing you do for Celiac Awareness Month. Read the draft and write to the USPSTF here. http://www.uspreventiveservicestaskforce.org/Page/Document/draft-recommendation-statement150/celiac-disease-screening
    • New to this--first gluttened exp. How to feel better?
      Just adding to what others have said.  It does take some time but it's likely you will start to feel better.  It took me about a year but now I feel great.  A good probiotic might help.  I use one from Synergy that my naturopathic doctor sells at her office.  I have gotten in the habit of emailing restaurants before I try them and have had very good luck.  One owner of a very popular restaurant in my area took the time to reply and said she had Celiac disease (she sent great detailed info about their food).  Many of the people responding will even tell you who to ask for when you come in.  Good luck and hoping you feel better soon.
    • How effective is HD skin biopsy after being gluten free for a year
      i am presuming that the boils were dx as acne inversa, which can have a relationship to celiac in some persons
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,738
    • Most Online
      1,763

    Newest Member
    Ladywolf
    Joined