Thiamine Thiamine Thiamine

Thank you for sharing your story so others can benefit from your experiences and expertise. My heart breaks for all you've gone through and I cannot begin to imagine going through all that because of the incompetence of the very people who are supposed to prevent all that. 

LisaSan andCnazrael89,

You might enjoy reading this blog post if you haven't already.....I  have a similar story to Knitty Kitty's....

I am citing this post because it explains the Thiamine connection very well....

If I had to write it again......I might of said "A Case for B-Complex Supplementation for a Season in Time" because as Knitty Kitty well explained......all the B-Vitamins work synergistically to fight inflammation in the body.......Zinc, Vitamin D and Magnesim (each in their own right) also do the same.

If you have a STRESS/Inflammation problem you definitetly have Magnesium and B-Vitamin problems!!!

Here is my story, in part, at least if you want to read more about it  you can just search for the Posterboy on Celiac.com and read the rest of my Posterboy blog posts.....where I explain how low/NO stomach was part of my journey!!!

I hope this is helpful but it is not medical advice.

Good luck to you both on your continued journeys!

2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Hi Knitty kitty, 

yes doctors are not trained in vitamin and mineral deficiencies but pharmaceuticals. I am so sorry to read your story. 

In 1994, I went to a doctor with my grandmother, she told him, I wouldn’t eat, I explained I was in pain, bloated, nausea, lack of appetite. Of course, he thought I had an eating disorder, so I was put on antidepressants. My numb feet was just the way I was !! Apparently, I had seasonal affective disorder too. Nope I was freezing cold (linked to iron and B12 deficiency), my muscle and joint pain were part of S.A.D.  (vitamin D deficiency, calcium and magnesium deficiency). My diahorrea was due to stress. My repeated water infections were treated with antibiotics. My extremely painful periods causing nausea and Diahorrea meant I had to have long term contraception to stop them. My extreme fatigue was just depression. My migraines were because I wore glasses. My memory loss was depression. My hand tremors were due to stress. My sore throat, swollen glands, blistering of skin to chest, abdomen, thighs, vomiting, dreadful cough and inability to get out of bed were a viral infection. 
Finally a positive tTG-IgA test because I was not moving from that doctor’s office until they ordered tests in 2020. Gave up gluten and Lactose, didn’t help, got worse, ended up on a neurology ward because I couldn’t sit, stand walk without tremors (vitamin B12 and E deficiencies). 
Discharged in the same state as the blood test wasn’t written on my notes. I’d found out a few months before that I had a previous positive blood test in 2017 but it had been lost in the system. I had developed Small Intestinal Bacterial overgrowth, the valve between my small and large intestine doesn’t work properly causing mayhem, I can eat once a day as I have slow transit, still have to take supplements every day, have B12 shots. I had genetic testing and last flare of SIBO 13 days ago. Yet when endoscopy rang they still wanted me to eat gluten for 2 weeks for my biopsy on 14 December. I explained what I’d been through and other conditions like SIBO cause gut damage. 

But have I not suffered enough ? Permanently disabled, nerve pain, joint and muscle problems. Lost jobs, friends, given up studies, relationship breakdowns and my goodness the discrimination has been unbelievable. Fortunately, we have quite a lot of support in the U.K. with vitamin B12 deficiency/pernicious anaemia. 

Out of curiosity, I ate some gluten yesterday, up 5 times in the night, absolutely exhausted today, 5 more times having bowels open. But do doctors really know that it can take 2 years for gut, brain and body to heal. 

@Charliexxx,

It's not just B12 and Vitamin D deficiencies.  Doctors know those are the only two tests for vitamin levels that are fairly reliable.  The thing is we can have vitamin deficiencies before the blood levels change.  

Doctors don't mention or pay attention to the other B vitamins that are needed for all eight B vitamins to work properly together.  This is why people are misdiagnosed and suffer for so long.  

B Complex vitamins plus additional high dose Thiamine and minerals like magnesium, iron, potassium and trace elements.  

I'm sorry you've had such a rough journey, too.  But you've got friends and a support system here now.  Let's move forward to healing. 

Keep us posted on your results! Best wishes.

On 12/9/2022 at 7:56 PM, knitty kitty said:

@Charliexxx,

It's not just B12 and Vitamin D deficiencies.  Doctors know those are the only two tests for vitamin levels that are fairly reliable.  The thing is we can have vitamin deficiencies before the blood levels change.  

Doctors don't mention or pay attention to the other B vitamins that are needed for all eight B vitamins to work properly together.  This is why people are misdiagnosed and suffer for so long.  

B Complex vitamins plus additional high dose Thiamine and minerals like magnesium, iron, potassium and trace elements.  

I'm sorry you've had such a rough journey, too.  But you've got friends and a support system here now.  Let's move forward to healing. 

Keep us posted on your results! Best wishes.

Hi, i have been experiencing some of these deficiency symptoms and was wondering how you are doing now? Also, would you suggest a multivitamin or is it more effective to take higher doses of each singular vitamin?

@Evan0529,

I'm doing great now.  Thanks for asking.

I have taken a B 100 Complex.  There's different brands and prices, so pick one that fits you.  Make sure the vitamins are free from gluten.  

I have taken the eight B vitamins individually.  It's just really what fits in with you.  

I personally don't like multivitamins because they have minerals which can hamper vitamin absorption.  

I take the B vitamins before or at the beginning of a meal and minerals at the end of the meal.

And, of course, I take additional thiamine in the form Benfotiamine which helps heal the digestive tract.  I also take Allithiamine or Thiamax, forms of Thiamine that help the brain with neurological symptoms.

Hope this helps!

12 hours ago, Evan0529 said:

Hi, i have been experiencing some of these deficiency symptoms and was wondering how you are doing now? Also, would you suggest a multivitamin or is it more effective to take higher doses of each singular vitamin?

Hey Evan,

Thanks for asking, how I am. I’m in the U.K. and we have 5 charities for vitamin B12 deficiency/pernicious anaemia. Yes, such a small island with that much dedicated support. I live not far from one, so even though I’d been up half the night being ill, I was determined to attend the latest meeting.

Over here the B12 test measures both active and inactive vitamin, 80% of which could be inactive. Doesn’t tell what’s happening at cellular level (functional B12 deficiency) as serum (blood) is pretty unreliable, exactly like you said. Laboratories flag results when it is pathological (disease state) and a person has been pretty unwell for months or years. 

Like Knittykitty, I take my vital amines (their proper name), minerals and amino acids (needed to make chemicals for nerve cells) separately which also get overlooked. I’m on day 15 of gluten challenge, just popped to the chemist as I am getting more and more constipated. When I can I insist on limping everywhere and fortunately,  can hide behind bushes to vomit.  If I showed any doctor what my private gastroenterologist prescribed me as I have slow transit, they would be clueless. Oh it’s just a prokinetic, a medication that helps the gut wall contract. Yes, but look properly, it belongs in the serotonin family, that so called happy hormone does so much more than that !! 

Sending my best. 

@Charliexxx,

Hope you are feeling better. 

Gastroparesis or slowed transit time can be a symptom of Thiamine insufficiency, as can constipation.  

Thiamine helps keep SIBO in check.

Tryptophan and Pyridoxine B6 are needed to make serotonin.  

Some people need methylcobalamine instead of regular B12.  Having the MTHFR genetic variation occurs frequently with Celiac Disease.  

Riboflavin B2, Thiamine, Folate or methylfolate, and Vitamin C and copper are also needed to produce red blood cells in anemia.

Thanks Knittykitty, 

I pretty much have to take everything. Have you read Dr Derrick Lonsdale’s M.D and Chandler Mars book on Thiamine Deficiency ? I told a doctor I was copper deficient having had private test and he said Wilson’s disease. I had to correct him, no that’s a hereditary illness where the liver can’t break down copper and toxicity occurs. 

Its day 18 of gluten challenge, yesterday it felt like someone had stamped on my stomach!! They don’t call it a challenge for nothing you know!! 

😊

@Charliexxx,

Yes, I'm reading Dr. Lonsdale and Dr. Marrs' book "Thiamine Deficiency Disease, Disautonomia, and High Calorie Malnutrition".  

I got so ill so quickly from a gluten challenge, I opted for genetic testing.  

Hippocrates said "first do no harm" which is counterintuitive to doing a gluten challenge.  He also said "let food be your medicine."  

High dose Thiamine really helped me.  It's safe, nontoxic and you would be amazed at how much it helps.

More articles by Dr. Lonsdale and Dr. Marrs can be found on Dr. Marrs' website https://www.hormonesmatter.com

And their published peer reviewed articles are available on PubMed.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

https://www.ncbi.nlm.nih.gov/pmc/?term=Lonsdale+Derrick

Hope this helps!

I don't envy you @Charliexxx doing the gluten challenge. Hope you get through it. Good to see that you're still smiling!! If I had to do the gluten challenge, it would feel like I've eaten a bowl of broken glass, literally ... or my intestines were used in a tug of war.

I'm curious what was the private test you used to test your copper levels? Is it available to purchase online?

22 hours ago, Rogol72 said:

I don't envy you @Charliexxx doing the gluten challenge. Hope you get through it. Good to see that you're still smiling!! If I had to do the gluten challenge, it would feel like I've eaten a bowl of broken glass, literally ... or my intestines were used in a tug of war.

I'm curious what was the private test you used to test your copper levels? Is it available to purchase online?

Hi, 

Thanks for the support. It is character building, I’ve got lots of that as I’m particularly quirky. So, my small Intestinal bacterial overgrowth had to be diagnosed by a gut microbiome as my reaction to a breath test was severe. I had no good gut bacteria meaning I would have low iron, ✅ , low calcium received an infusion so ✅  B12 shots ✅ etc. Plus, copper came up on the report. My symptoms (which I keep a diary for and food diary) were every afternoon I would become breathless, dizzy, extremely fatigued and my legs would give way. I asked the functional practitioner could I also be copper deficient. I introduced copper citrate, within a week I wasn’t having to promptly lie down before I fell. Rest there for a bit before crawling, breathless onto my sofa.
So, I had a positive physiological (biological) response to taking it without a definite blood (serum) test. 
I’m from a medical family and know that blood tests aren’t that accurate as we are not clones. 
😊

On 12/30/2022 at 12:36 PM, knitty kitty said:

@Charliexxx,

Yes, I'm reading Dr. Lonsdale and Dr. Marrs' book "Thiamine Deficiency Disease, Disautonomia, and High Calorie Malnutrition".  

I got so ill so quickly from a gluten challenge, I opted for genetic testing.  

Hippocrates said "first do no harm" which is counterintuitive to doing a gluten challenge.  He also said "let food be your medicine."  

High dose Thiamine really helped me.  It's safe, nontoxic and you would be amazed at how much it helps.

More articles by Dr. Lonsdale and Dr. Marrs can be found on Dr. Marrs' website https://www.hormonesmatter.com

And their published peer reviewed articles are available on PubMed.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

https://www.ncbi.nlm.nih.gov/pmc/?term=Lonsdale+Derrick

Hope this helps!

Thanks so much Knittykitty, 

Sorry to hear you got so ill eating gluten. Where I live the powers that be will not accept anything but. I said, fine but you do know that celiac crises is a rare but a medical emergency. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2900539/

In 2014, Professor Michael Marsh (who the Marsh scale was named after and had celiac disease himself) berated his colleagues for insisting that the level of destruction occur to the gut before a diagnosis was made. 

https://www.foodsmatter.com/coeliac-disease/gluten-intolerance/gluten-summit-marsh-fasano-07-14.html

I am so pleased thiamine works for you. I started taking it January 2021, I also needed lots of other supplements including vitamin E. Only a junior doctor knew its importance after I had read a medical journal.

Happy New Year