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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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  • Posts

    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
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