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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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    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
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    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
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