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Brain Talk Forums


Nancym

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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!


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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.


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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.

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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

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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