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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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    • Scatterbrain
      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
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