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

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
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

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

chrissy Collaborator

what was the brain talk forum?

mamaw Community Regular

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

swittenauer Enthusiast

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

Nancym Enthusiast

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

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

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

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

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

  • 5 weeks later...
Lesliean Apprentice

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

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

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

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

Nancym Enthusiast
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

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

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

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

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
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

..

diamondheart Newbie

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

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.

  • 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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.