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


Scott Adams

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Scott Adams Grand Master

Oh, if you haven't already subscribed to email updates on this thread, please do--just "Follow This Topic" at top right.


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  • Replies 81
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SkyBlue4 Apprentice

Thanks! I never noticed the "follow this topic" button.

gloriacatwoman Newbie

I am new to the gluten free eating and would love a forum/chat room.  Especially getting up to date information.  Thank you.

ptkathy Newbie

I am interested in this as well. Diagnosed in July 2013, still adjusting.

moosemalibu Collaborator

The group is growing nicely!! :)

justneguy Newbie

Newly diagnosed Celiac.  Depending on times, I would consider participating.

marlene333 Rookie

I would definitely be interested in this, but I just do not know how much time I will have to do a regular follow-up or participation.  I do use this website to check to see what products are gluten free...(I do have Celiac Disease).... and have found it VERY helpful.  If you want to contact me, reply and I will check a little later.  Thanks, Marlene


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Kath Urbahn Newbie

I absolutely would be interested in joining an online support group.  I know my sister would be, too. 

Scott Adams Grand Master

Can anyone help Personal Message all members to make sure that they are set up to  "Follow This Topic" at top right? Whoever does this should probably include a link to it:

https://www.celiac.com/forums/topic/105252-post-here-to-join-celiaccoms-online-support-group-with-live-chat-meetings-free/

 

My hope is to plan a first live chat meeting sometime next month.

1desperateladysaved Proficient

 

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;

To join just create a forum account, then make a post in this topic, then click "Follow This Topic" at top right.

 

Our goal is:

  • 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.

 

I will join, if I am needed, and available for the meeting times.

gfyvr Newbie

Happy to help out and moderate/answer questions if you wish, especially from a Canadian aspect, which is where I live!  Diagnosed in 1983, and I have followed this website since its inception, I currently moderate several Facebook pages and have run a Chapter of a Celiac Association, along with putting on lots of seminars and events through the years.  I have also travelled extensively mostly with work however some on vacation, through Canada, Europe, USA, Central America, Japan, Australia and New Zealand.

 

I have several auto immune related medical conditions (along with unrelated medical conditions now), Celiac being diagnosed 5 years after Graves Disease - although they did not know about the auto immune connection back in the 70's and 80's as Celiac was still listed as a rare disease.

 

The best learning experience I had within the last year was attending the bi-annual Symposium for Celiac Disease in Chicago this past September, where all the top Celiac doctors and researchers met and discussed the current and future for Celiac Disease and Non Celiac Gluten Intolerance around the world based on current research taking place.  It truly was an eye opening experience, especially to hear how a group of these experts are helping get people diagnosed in Third World countries, such as parts of Africa, where their primarily meal is also couscous (which is wheat based) and how to cope with their new diet.  I never thought I had it bad 30 years ago when I was diagnosed as I was so happy to get better and just eat really plain food, however when you have little money and only one affordable type of food that is a big issue.  No longer is celiac disease a Northern European descent disease - it truly is affecting people around the world. 

 

I look forward to chatting with all of you!

gfyvr Newbie

Can anyone help Personal Message all members to make sure that they are set up to  "Follow This Topic" at top right? Whoever does this should probably include a link to it:

https://www.celiac.com/forums/topic/105252-post-here-to-join-celiaccoms-online-support-group-with-live-chat-meetings-free/

 

My hope is to plan a first live chat meeting sometime next month.

Would be great to help out however I seem to have some posting restrictions on my account despite it being 3 years old now.  I guess I did not post enough in the past... :)  If you can deal with that then I can PM people if you wish.

GF Lover Rising Star

Would be great to help out however I seem to have some posting restrictions on my account despite it being 3 years old now.  I guess I did not post enough in the past... :)  If you can deal with that then I can PM people if you wish.

 

Hi gfyvr, and Welcome.

 

Your restriction involves the number of posts and not by how long you are a member.  Perhaps you would like to post more about your journey and introduce yourself to others in the Forum.  That should help you get closer to getting your restriction lifted and would be great for other members to get to know you.  

 

Colleen

RNGayle Enthusiast

Just joined this forum. I have been using this website to help with the myriad of questions that have arisen since I went gluten free (the last 6 months.) I had a food sensitivity panel done back in May of 2013 which showed I was sensitive to a number of things, including wheat, gluten, rye, barley, dairy, eggs, soy, etc. I was surprised at all except the dairy. I figured that one out myself. It took me a couple of months to eliminate gluten. Like a lot of folks, I was in denial because I was a gluten addict. I finally did eliminate the gluten starting in mid July 2013. I had no idea where that would lead. Now, I'm afraid I've been off gluten too long to get tested for Celiac. It's a tortuous thought to consider a gluten challenge just so I can get tested for Celiac. It's bad enough when I am exposed to trace amounts accidentally. Hoping to learn more here. Thanks so much!

heymom45 Newbie

I would love to participate in your online support for celiacs!!  I've lived most of my life with celiac disease, but am reaching out for support now, for the first time. I look forward to visiting your site frequently!!

  • 2 weeks later...
Dianaw Newbie

I would love to participate if able.

Scott Adams Grand Master

Poll for members.

Scott Adams Grand Master

If you haven't done so  already, please respond to our poll in this thread regarding future meeting times for the online support group.

 

Also, please post here the possible topics of our first meeting, which I hope to schedule soon.

GottaSki Mentor

Hi Scott-

 

What time zone is being used for the poll?

 

Thanks!

WinterSong Community Regular

I'm game!

kharmison Newbie

An online support group would be great!

Scott Adams Grand Master

Please answer the poll for your own time zone...

 

Hi Scott-

 

What time zone is being used for the poll?

 

Thanks!

NoWheatGirl27 Newbie

Please answer the poll for your own time zone...

I'm interested! Eastern standard time here. New to celiacs after birth of my daughter.

Cincin47 Newbie

 

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;

To join just create a forum account, then make a post in this topic, then click "Follow This Topic" at top right.

 

Our goal is:

  • 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.

 

I would be very interested in joining this group.  I have been diagnosed for two years and have been on a gluten free diet since.

Scott Adams Grand Master

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    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
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