Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Brain Talk Forums

Nancym

Recommended Posts

Nancym Enthusiast
Nancym
Posted

I really miss the Gluten Brain Talk Forum. Has anyone here heard if it is coming back? I wish they'd put a message up!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bluejeangirl Contributor
bluejeangirl
Posted
I really miss the Gluten Brain Talk Forum. Has anyone here heard if it is coming back? I wish they'd put a message up!

I don't know...I miss it too.

Nancym Enthusiast
Nancym
Posted
  • Author

I think of all the research and stuff collected by the members and it is depressing to think it might be lost!

chrissy Collaborator
chrissy
Posted

what was the brain talk forum?

mamaw Community Regular
mamaw
Posted

I too miss it, anything we all could do to make them bring it back????

swittenauer Enthusiast
swittenauer
Posted

I'm not familiar with it. What was it?

Nancym Enthusiast
Nancym
Posted
  • Author

They were a forum that dealt with a lot of different diseases. The gluten free forum there was really amazing. The members had collected a ton of research, genetic info, recipes, all kinds of stuff and kept it stickied. It was a very cerebral place where people loved to research and find things out. *cry*

The URL for the forum is/was: Open Original Shared Link

They had a message up for several days saying they would be working on it, but nothing now for a week.

I too miss it, anything we all could do to make them bring it back????

I wouldn't know who to contact. :( I'm hoping someone will see this that might know more.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


skbird Contributor
skbird
Posted

I'm not sure what happened over there but they did go offline about a year ago for a bit because something major on the server crashed. Maybe something similar happened again. It's an amazing resource for sure.

Stephanie

debmidge Rising Star
debmidge
Posted

That explains as to why several months ago I tried to register with them and emailed their administrator as to why my info was not "taking" and never got a response........I tried again last night coincidentially and they are totally gone from cyberspace.

This is a commercial for Celiac.com Board:

That's why we are grateful we have this board. A Thank You to Scott, the Administrators and supporters. Anyone at anytime can support the board with a donation (there's a button for it somewhere). End of Commercial.

rinne Apprentice
rinne
Posted

I went to the Brain Talk Forum link and found this message, just posted today.

July 20, 2006

Greetings! We've had a pretty major crash here at BrainTalk involving both software and hardware. I'm working on bringing everything back up as soon as possible, so please rest assured that BrainTalk will be back in a matter of days!

In the meantime, I will be using this status page to keep everyone updated on progress.

I'm terribly sorry for this downtime. It happened at the worst possible time for me (while I was traveling), and I know how important BrainTalk is to everyone. I will make sure it comes back online ASAP (good opportunity for me to upgrade some of the software, too!), and thank you for your patience.

-John Lester, BrainTalk Communities

braintalk@gmail.com

Nancym Enthusiast
Nancym
Posted
  • Author

Phew! So glad you saw that. I was losing heart. I hope they had good backups.

  • 5 weeks later...
Lesliean Apprentice
Lesliean
Posted

Does anyone know the status of hastypastry.com? Its been down now for a month tomorrow and there have been no updates.

Leslie

Lesliean Apprentice
Lesliean
Posted

I think of hastypastry.com or braintalk as the other website with a great message board. Similar to here with a huge research collection to peruse.

Since they went down a month ago there has not been a single update on the status of their upgrades and repair. That is a bit disconcerning. Does anyone know the status of hastypastry.com? When they will be back? I hope they kept their permanent file information that included everything from doctor abstracts and articles to recipes.

Is there anyone out there from braintalk who has information?

Leslie

Rachel--24 Collaborator
Rachel--24
Posted

I love this message board and I'm kind of partial to it but Braintalk had alot of research that I would turn to when needed. A huge collection of valueable information collected on that board. I hope its not all lost. That would be tragic. :(

gfp Enthusiast
gfp
Posted

Carla (jcc) has saved The Gluten File here: Open Original Shared Link

Nancym Enthusiast
Nancym
Posted
  • Author
Carla (jcc) has saved The Gluten File here: Open Original Shared Link

Yeah! I saw that in another post, and I have it bookmarked. Boy, it sure doesn't look like BT will ever be back. :(

Nancym Enthusiast
Nancym
Posted
  • Author

We've been talking about it in a couple of other threads. :( I have no idea, I'm kind of doubting it at this point. The Gluten File is around though still!

Open Original Shared Link

diamondheart Newbie
diamondheart
Posted

I've done some searching around to figure out who to contact about Brain Talk.

My understanding is that Brain Talk was created and kept up by John Lester. His website describes this:

Open Original Shared Link

He is no longer with the hospital that he first founded Brain Talk Communities under. This makes me wonder if he needs financial assistance in getting Brain Talk back up. Plus, I think he might be a pretty busy guy. The e-mail addresses I have found for John Lester include:

braintalk@gmail.com

john.e.lester@gmail.com

pathfinder@lindenlab.com

I have tried e-mailing him letting him know how great the website was, and asking about updates, with no replies. Perhaps if more fans wrote positive e-mails to him, he might finally respond. Maybe it's just going to take some time until it comes back up. I haven't lost hope yet, though I do miss the Gluten Sensitivity/Celiac Disease forum and the great bunch of folks who used to post there. Good to see you here Leslie! You were one of the first to respond to my querries about the DQ1 issues. I've seen Cara occassionally post, and am glad she created Open Original Shared Link on a separate web page. Too bad we don't have backups of all the stories everyone submitted though.

Claire

Calona Newbie
Calona
Posted

Hi everyone, I loved BT that board helped me so much in finding the solution to my health problems. I really miss it. Does anyone know if John Lester was the only one running BT? If so could something have happened to him, like, god forbid, he got sick. Someone must know more about him. I'm sure that thousands would flock to his door to help. I pray that everything will come together. Patricia :)

Lesliean Apprentice
Lesliean
Posted

I have an e-mail in to Cara. I'll post her response if I get one. Maybe she will know something. So many of us use more than one website and gravitate to one or the other for different things. I always refer to celiac.com for banned ingredient lists but use braintalk for recipes... The message board is just a personal preference. Thank God both are available to us. We need all the help we can get. :) John Lester did say he was traveling and down for a while only and doing repair and upgrades. Maybe it is a time consuming process. Especially if it requires parts.

Good to see you Claire! We are old friends. I hope all is well with you.

I hope all the people just working through their diagnosises and treatment find their way to websites and people who can guide them. We all probably have stories to tell about being sick and not knowing where to turn for help.

Leslie

jcc Rookie
jcc
Posted
I really miss the Gluten Brain Talk Forum. Has anyone here heard if it is coming back? I wish they'd put a message up!

BRAINTALK2

Open Original Shared Link

Come say hello! This is a temporary site put up by a good guy as a meeting place until we know what is going on with JL/Braintalk. Good guy is Doc John~ Open Original Shared Link

Cara

Matilda Enthusiast
Matilda
Posted

..

diamondheart Newbie
diamondheart
Posted

Maybe we need to start a thread for Brain Talk "alumni". I've been jonesing for BT too, but no word. At least Cara recreated The Gluten File, at least what she had of it!

Claire

diamondheart Newbie
diamondheart
Posted

For all you who loved Brain Talk, a temporary forum is now back up. You'll have to re-register. Spread the word!

Open Original Shared Link

For those of you who aren't familiar with it, the Brain Talk Communities Gluten Sensitive/Celiac Disease forum was formed to acknowledge the neurological symptoms that can happen with gluten reactions, though folks talk about a lot more than that.

Cara already posted the good news, but it's buried in this thread (I'm a little slow):

Open Original Shared Link

That's the good news. The bad news is that Open Original Shared Link is temporarily off-line. Let's hope Cara can figure out how to get it back up and running!

Claire

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold. Our bodies have difficulty absorbing and utilizing it. Only 30% is absorbed and less can be utilized. There's some question as to how well multivitamins...
    2. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      I am taking a multivitamin which is pretty bolstered with B’s. Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol. Started Creapure creatine monohydrate in June for athletic recovery and brain fog. I have been working with a Nutritionist along side my Dr. since February. My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t ...
    3. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
    4. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Vitamin and mineral deficiencies can make TMJ worse. Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain. Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease. It's important to eat healthy nutrient dense diets like the Autoimmune...
    5. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,311
    • Most Online (within 30 mins)
      7,748
    EMP6543
    Newest Member
    EMP6543
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "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." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.