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No Celiac Chat Sites

Grissomz

By Grissomz
in Introduce Yourself / Share Stuff

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Grissomz Newbie
Grissomz
Posted

I've yet to find a full-time Celiac chat site.

I've seen some on a lot of other illnesses, but no go on Celiac.

If anyone know of one, don't hesitate to let me know.

Griss

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celiac3270 Collaborator
celiac3270
Posted

No, I haven't found a celiac chat room, either. There are many message boards and I've been to a few, but I like this one best--enough information to be useful, but small enough to be personal and for you to actually feel like you know the people here.

I think that in a way, a message board is better than a chat room. If you have AIM, AOL, Yahoo Instant Messenger, MSN something, etc. you can talk to someone or even, with celiac AOL members, create a private chat room. On a message board, though, your topic stays up there forever, so you can get replies hours, days, and weeks later. Additionally, the information is left there for others to see and use....but no, I don't know of any chat rooms on celiac.

Canadian Karen Community Regular
Canadian Karen
Posted

Hi!

I also am not really a fan of chat sites..... but I know of one at

www.delphiforums.com

Click on "Health and Wellness" on the left hand side. The celiac website is at the top of the list in this section..... They have a chat section in there, I don't know what it is like though.....

Have a great day!

Karen

celiac3270 Collaborator
celiac3270
Posted

Oh, wow...I didn't know there was a chat room at Delphi Forums! Never seen that...then again, I don't spend much time there...i'll go check it out, but I still like message boards :D

celiac3270 Collaborator
celiac3270
Posted

Oh, I went to the Delphi site, but I can't get the chat room feature to work...maybe nobody else was on--that might have been my problem. With some chat rooms, they only work if someone is already at the page waiting or something weird like that. I saw the feature, though :)

darlindeb25 Collaborator
darlindeb25
Posted

are you a member of their forum--maybe u have to be a member for it to work--i have gone in there many times when no one else is there--it is very slow--but i have had lots of fun there :lol: deb

lovegrov Collaborator
lovegrov
Posted

The celiac chat room at delphi is rarely in use. I THINK there is a regular time when some people get on but you'd have to ask there.

richard

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flagbabyds Collaborator
flagbabyds
Posted

ON the Yahoo support group sites there is a chat feature, I don't know if many people go there.

celiac3270 Collaborator
celiac3270
Posted

I am a member there, but don't post--you're required to be a member to read the boards, so I joined for that purpose...

Thanks for the information, Richard.

angel-jd1 Community Regular
angel-jd1
Posted

HA HA celiac3270........you post on my board!! I guess I just must be special :)

Even on the yahoo groups it is hard to get a time set aside to "chat" because people live in so many different time zones etc! I own a board there and I have tried getting the chat feature going and it seems to be hard for that reason. I would LOVE to be able to use that more, I think it would be a great resource.

I guess I'll have to try harder!! ;)

-Jessica :rolleyes:

celiac3270 Collaborator
celiac3270
Posted
HA HA celiac3270........you post on my board!! I guess I just must be special

Even on the yahoo groups it is hard to get a time set aside to "chat" because people live in so many different time zones etc! I own a board there and I have tried getting the chat feature going and it seems to be hard for that reason. I would LOVE to be able to use that more, I think it would be a great resource.

LOL... :D

Yes, that's another obstacle...there's a three hour difference between the east coast and the west coast...then there are also people from the UK on many of these boards.....there's a 5 hour difference between the east coast of the US and the UK....etc.

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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    • rei.b
      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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