Thiamine Thiamine Thiamine

[Scott Adams]

@knitty kitty I hope you are doing well!

[knitty kitty]

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

 

Please read this.  It describes gastrointestinal beriberi due to thiamine deficiency in this case caused by poor diet and alcohol, but Covid causes thiamine deficiency, too.  Different causes, same results.  Thiamine deficiency resulting in gastrointestinal beriberi.  

Doctors don't recognize vitamin deficiency diseases because we don't live in a third world country.  

My doctors couldn't figure out what was wrong with me, either.  I was written off as hypochondriac.  I had been prescribed medication that is known to cause thiamine deficiency.  Along with malabsorption from undiagnosed Celiac Disease, the medication pushed me into thiamine deficiency and gastrointestinal beriberi.  I'm a microbiologist.  I knew about cell biology and vitamins and minerals.  I took high dose thiamine (in the form allithiamine and benfotiamine -- available without prescription) and had improvement immediately.  I had developed other deficiencies as well that have been corrected with supplementation.  Yeah, I used to think vitamins were for health nuts, but they are the fundamental chemicals our bodies rely on to function.

[Posterboy]

Knitty Kitty,

I wanted to add this topic to your wonderful thread on Thiamine that I just started about how Refeeding Syndrome can be treated by Thiamine replacement therapy.

Here is the original research article if you don't have time to read the longer thread....

Entitled "Thiamine and folic acid deficiency accompanied by resistant electrolyte imbalance in the re-feeding syndrome (aka RFS) in an elderly patient"

https://pubmed.ncbi.nlm.nih.gov/28244719/

It is amazing how many places a Thiamine deficiency shows up....when you begin looking for it.....and know what to look for....

My Hypoalbuminemia aka Low Albumin Levels was because I first developed Low Magnesium and Thiamine levels!

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

Posterboy,

[knitty kitty]

Yet another experience post...

Having a genetic test for the most common genes that cause Celiac Disease would be what I would choose if in your place. 

Granted, not every gene for Celiac Disease is known and simply having a gene for Celiac Disease does not mean the gene has been turned on.  However, improved health on a gluten free diet and having one or more of the commonly known Celiac Disease genes would be enough for some doctors to make the diagnosis of Celiac.

Doing an endoscopy (the "gold standard" for Celiac Disease) and  blood testing for antibodies specific to Celiac Disease would require going back on a gluten diet for several weeks or months which would cause more inflammation, malabsorption and damage to one's overall health.  Some people with Celiac Disease suffer even more severe reactions when they resume consuming gluten in their diets for testing.  Some people with Celiac Disease are serionegative (they don't produce enough antibodies to measure in blood tests).  Also, the intestinal damage looked for in endoscopy can easily be missed because the damage is microscopic and can be patchy.  

However having a "gold standard" diagnosis might be helpful for future medical reference, although this may cause higher costs in health insurance coverage.  

These are things you need to discuss with your doctor.  

When I began to suspect Celiac Disease, I tested serionegative for antibodies because I had developed vitamin and mineral deficiencies which can affect white blood cell (antibody) production as well as red blood cell production in anemia.  And due to severe reactions to gluten, I was unable to complete a gluten challenge for endoscopy.  Decades previously when my blood work showed high white cell counts, my doctor had dismissed the result as seasonal allergies and smoking, and did not investigate further.  He merely gave prescription medications to hide the symptoms and treat the cascade of health problems associated with untreated Celiac Disease and the resulting malnutrition.  My gastroenterologist dismissed my request for Celiac biopsies being taken because I didn't fit the "classic Celiac profile" of wasting away, starving, skinny.  The Inflammatory type of Celiac Disease resulting in edema and obesity is better known today than when I was seeking a diagnosis decades ago.  But still, in which other disease does the doctor tell a person to purposely hurt themselves more before he will begin looking and testing for a diagnosis?   Yes, I am scarred by the experience.   A doctor who was kindly and patiently humoring me agreed to do the genetic test.  He was extremely surprised when the genetic test results came back positive for TWO genes for Celiac Disease.  

I'm not a doctor.  These are my experiences with the diagnostic process.  

Discuss with your doctor the diagnostic process that is best for you.

Hope this helps!  Keep us posted on your journey!  Best wishes!

[knitty kitty]

I was diagnosed with insulin resistance, prediabetes, and eventually Type Two Diabetes.  I was prescribed Metformin.  

Metformin is supposed to make our body more sensitive to insulin and by doing so, our body's blood sugar level is lowered.  

Metformin is a bad drug, in my experience.  Metformin uses the same transporters to get into cells as thiamine (Vitamin B1).  With thiamine transporters usurped and blocked by Metformin, very little thiamine can enter cells.  Thiamine is instrumental in converting carbohydrates into energy.  With too little thiamine, carbs are turned into fat and stored in our body.

Metformin can also cause a deficiency of B12.  Metformin interferes with the absorption of B12.  Metformin also blocks the transporters that B12 uses to get into cells.  Metformin can also interfere with iron absorption.  Deficiencies of B12 and iron can cause anemia.

Wheat (and other gluten containing) products are required by law to be enriched with vitamins lost in processing.  Gluten free facsimile foods are not required to be enriched with vitamins lost in processing.  When we switch to gluten free facsimile foods (like gluten free bread), we lose the vitamins usually added to the gluten containing counterparts.  

Celiac Disease is a disease of malabsorption.  The villi in the small intestine, where vitamins are usually absorbed, are damaged and cannot absorb the vitamins, hence we develop vitamin deficiencies.  Blood tests for vitamins are not accurate.  Our body likes to keep a certain amount of vitamins in the bloodstream to supply important organs like the heart and the brain with what they need to function, while the tissues are robbed of their stores of vitamins.  Blood tests don't reflect the vitamin deficiency inside the cells of tissues and organs.  Blood tests can reflect how much of certain vitamins were consumed in the previous twenty-four hours.  Some people have "normal" blood levels, but show a deficiency in tests that measure the by-products of thiamine usage.  

Thiamine is water soluble.  It can't be stored for longer than three weeks, and we can become deficient in as little as nine days.  Diabetics excrete more thiamine than nondiabetics.  Scientists don't know why.  

I was morbidly obese.  I could not lose weight even though I changed my diet at the prediabetes warning.  Thiamine deficiency symptoms include peripheral neuropathy and edema of the lower legs.  My toes "buzzed" and my ankles used to swell up.  I could press my thumb into my ankle and a dent would stay. I also used to get Charlie horses (muscle cramps) in my lower legs.  Thiamine needs magnesium to work properly.  Magnesium helps muscles relax.  Magnesium deficiency can cause really horrific nightmares, too. 

I had tachycardia.  When the heart does not have enough thiamine, the heart can throw PVC's, and suffer SVT's, tachycardia, fast heart rate, skipping beats, etc.  Edema around the heart can occur.  These are symptoms of Wet Beriberi.

When our brain doesn't have enough thiamine, the Vagus nerve, which sends signals to our digestive tract, can be affected.  The cells in are digestive tract don't have enough thiamine needed to function properly resulting in gastroparesis, constipation, diarrhea, bloating, Gerd, etc.  This is Gastrointestinal Beriberi.  

Our thiamine deficient brain can register peripheral neuropathy, vestibular problems (balance problems, feelings of sea sickness), loss of hearing, and vision problems, as well as emotional lability (getting easily upset, irritability, mood swings, depression, irrational thoughts, impaired judgment).  This is common with Dry Beriberi.  

Our pancreas uses lots of thiamine to make insulin.  Thiamine deficiency can affect the amounts of insulin being made.  If we don't have a sufficient supply of thiamine, we can run short on insulin and our blood sugar levels go up.  

As diabetics, we have a higher metabolic need for thiamine because our bodies excrete more than nondiabetics.  We have a higher metabolic need for thiamine because we need to make insulin.  We have a higher metabolic need for thiamine because some medications like Metformin, thiazide diuretics, vaccines, and ACE inhibitors, cause thiamine to be excreted faster, and cause thiamine not to be absorbed in the digestive tract, and cause thiamine to be blocked from entering cells.  

As Celiac people with malabsorption issues, we need to compensate by giving our bodies plenty of thiamine and the other seven B Complex vitamins (the eight B vitamins all are interdependent).  Talk to your doctor about supplementing with a B Complex supplement and 300 -500 mg of thiamine.  

I adopted the AutoImmune Protocol diet and I supplemented with high dose Thiamine (500-1000 mg).  I began to lose weight and got my blood sugar levels under tight control.  I took thiamine and B Complex with every meal.  I was able to quit taking Metformin and the other drugs prescribed to cover the symptoms of other health problems that had arisen from malnutrition.  

[knitty kitty]

Proteinuria can be caused by dehydration and diabetes.  

Bilirubin is an indication of inflammation.  

Type Two Diabetes is frequently found in Celiac Disease.  

There is a connection between Diabetes and Thiamine deficiency.  The pancreas produces insulin and needs lots of thiamine to do so.  Thiamine is usually reabsorbed in the kidneys, but in diabetics, more thiamine is excreted.  This can result in low or insufficient thiamine levels.  Diabetic medications, like Metformin, and other medications, can cause a higher excretion rate of thiamine, resulting in thiamine deficiency.

The gallbladder also uses lots of thiamine to produce bile.  Stools without enough bile can be light colored.  Gallbladder problems resulting in gallbladder removal are common in Celiac Disease. 

Gastritis is also connected with thiamine deficiency, as the cells in the stomach need thiamine to make and secrete gastric fluids to aid digestion.  Contrary to popular opinion, gastritis is caused by insufficient gastric acid, not overproduction.  

Thiamine is the B vitamin that is stored for the shortest time.  Insufficiency can occur in as little as nine days.  However thiamine supplementation can restore proper functioning in a few hours.  Thiamine insufficiency symptoms can wax and wane because thiamine from the diet may vary.

Your body needs more Thiamine when you are sick, have a fever, are under stress (your brain can use as much Thiamine thinking as your muscles can use during physical exertion), exercise regularly, and in hot weather.  

Early Thiamine deficiency symptoms include anxiety, insomnia, weight loss or gain, emotional lability (mood swings, abrupt inappropriate emotional reactions), fatigue, edema of lower legs, shin cramps (Charlie horses), and depression, among others.

Vitamin deficiencies are not on most doctors' radar because we aren't in a starving country, BUT if you are eating lots of carbohydrate-filled, gluten free processed facsimile foods you may need more thiamine.  Gluten free processed facsimile foods are not enriched with vitamins and minerals like their gluten containing counterparts. 

The small intestine is damaged in Celiac Disease causing the inability to absorb proper amounts of vitamins and minerals.  Supplementation with B Complex vitamins while healing should be implemented while you are healing.  Discuss this with your doctor.  

More information on diabetes and thiamine....

Metabolic Benefits of Six-month Thiamine Supplementation in Patients With and Without Diabetes Mellitus Type 2

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921172/

[knitty kitty]

I have Celiac and Type Two Diabetes.  And I've had vitamin and mineral deficiencies.  I was very deficient in Thiamine (Vitamin B1).

Having high blood sugar made me feel dizzy and brain-foggy.   Diabetics have a higher metabolic need for thiamine.  Thiamine is needed to make insulin. 

I had Gastroparesis, where food doesn't move along the gastrointestinal tract properly,  found in both diabetes and thiamine deficiency.  Sometimes the exact same meal would cause problems, sometimes not, depending on whether the food had just sat in my GI tract and fermented or if it had moved along properly and been better absorbed.  My symptoms would wax and wane.  Only a tiny amount of thiamine from the diet are needed to improve deficiency symptoms.    

I included Schar crackers and sweet potatoes in my diet at that time.  Gluten free facsimile foods often are not enriched with vitamins as their gluten containing counterparts are required to do.  A diet high in carbohydrates from the Schar stuff and sweet potatoes requires more thiamine to turn them into energy than they contain.  

Thiamine is needed to turn carbohydrates into energy.  If thiamine is deficient, the body only incompletely burns carbohydrates leaving lactic acid as a byproduct.  Lactic acid can build up in the body and cause problems.  Thiamine is needed to clear lactic acid from the body.  

Sweet potatoes contain thiaminase which is a chemical that renders Thiamine useless.  Caffeine and tannins (in tea and wine) are also thiaminases.  Fish contain thiaminase, too.  Spinach is high in oxalates which contribute to kidney stones.  Thiamine is needed to break down oxalates so they don't form kidney stones.  

I tried probiotics, too.  I had looser bowel movements that smelled strange, like gasoline and motor oil.  That smell is lactic acid.  There were lactic acid producing bacteria included in my probiotics.  Lactic acid producing bacteria are also used to ferment foods like sauerkraut.  These bacteria can have a laxative effect.  Some lactic acid producing bacteria can make thiamine.

Excess lactic acid has been observed in Wernicke's Encephalopathy, a form of thiamine deficiency.  Balance problems and brain fog are symptoms of encephalopathy.

I found taking thiamine supplements improved my health dramatically.  The brain fog cleared, my diabetes is controlled by diet, my digestion improved.  

Interesting articles....

Wernicke Encephalopathy and Lactic Acidosis in Thiamine Deficiency

https://pubmed.ncbi.nlm.nih.gov/32284483/

Severe lactic acidosis reversed by thiamine within 24 hours

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388689/

Distinctive acid-base pattern in Wernicke's encephalopathy

https://pubmed.ncbi.nlm.nih.gov/17145109/

[DistantShores]

I believe this is what is happening to me right now. I'm noticing the muscle wasting most in my hands and feet. 

I may have to look into thiamine deficiency.

[Scott Adams]

I started taking the Benfotiamine version of thiamine over a year ago, and I do think that most celiacs should also be taking it.

[knitty kitty]

19 hours ago, DistantShores said:

I believe this is what is happening to me right now. I'm noticing the muscle wasting most in my hands and feet. 

I may have to look into thiamine deficiency.

Yes, with thiamine deficiency the body burns fat stores and will also break down muscle to provide energy as well.  

The World Health Organization (WHO) states that a thiamine deficiency diagnosis can be made if a patient is given 300 mg of thiamine hydrochloride (thiamine HCl) a day for a week and notices improvement.  Blood tests for vitamin deficiencies are not reliable.  

I had improvement within hours.  

The feeling of muscle wasting weakness is one symptom I had, but because the eight B vitamins all work together, other B vitamins contributes to this feeling.  Nerves need niacin, B12 (Cobalamine), riboflavin, folate and B6 (pyridoxine) in addition to thiamine in order to function properly.  Taking a B Complex supplement in addition to the extra thiamine (thiamine HCl or benfotiamine or allithiamine) will help with nerve health and muscle function.  

Thiamine needs magnesium to function properly, so a magnesium citrate supplement is beneficial when supplementing thiamine.  

 

[LINDA Jansen]

On 2/4/2022 at 12:19 PM, knitty kitty said:

Yes, with thiamine deficiency the body burns fat stores and will also break down muscle to provide energy as well.  

The World Health Organization (WHO) states that a thiamine deficiency diagnosis can be made if a patient is given 300 mg of thiamine hydrochloride (thiamine HCl) a day for a week and notices improvement.  Blood tests for vitamin deficiencies are not reliable.  

I had improvement within hours.  

The feeling of muscle wasting weakness is one symptom I had, but because the eight B vitamins all work together, other B vitamins contributes to this feeling.  Nerves need niacin, B12 (Cobalamine), riboflavin, folate and B6 (pyridoxine) in addition to thiamine in order to function properly.  Taking a B Complex supplement in addition to the extra thiamine (thiamine HCl or benfotiamine or allithiamine) will help with nerve health and muscle function.  

Thiamine needs magnesium to function properly, so a magnesium citrate supplement is beneficial when supplementing thiamine.  

 

My neurologist put me on B Complex after finding that I had a positive PAI46/5G and MTHFR. I have a long history of embolisms dating back to 1998 when I developed multiple, bilateral pulmonary embolisms, and had to be hospitalized for a week. I also have severe neuropathy in both feet and ankles and muscle wasting and weakness after six months of chemotherapy for uterine cancer. So i found this article very informative, thanks!

[knitty kitty]

3 hours ago, LINDA Jansen said:

My neurologist put me on B Complex after finding that I had a positive PAI46/5G and MTHFR. I have a long history of embolisms dating back to 1998 when I developed multiple, bilateral pulmonary embolisms, and had to be hospitalized for a week. I also have severe neuropathy in both feet and ankles and muscle wasting and weakness after six months of chemotherapy for uterine cancer. So i found this article very informative, thanks!

Here are some interesting studies that you may find helpful....

"The role of thiamine in cancer: possible genetic and cellular signaling mechanisms"

https://pubmed.ncbi.nlm.nih.gov/23893925/

"A very high dose of thiamine produces a growth-inhibitory effect in cancer."

And...

"High Dose Vitamin B1 Reduces Proliferation in Cancer Cell Lines Analogous to Dichloroacetate"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963161/

And...

"Subclinical thiamine deficiency: What is the most appropriate method of diagnosis and treatment?"

https://pubmed.ncbi.nlm.nih.gov/32985409/

Hope this helps!

[knitty kitty]

More research articles....

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

And...

9 Signs and Symptoms of Vitamin B12 Deficiency

https://www.healthline.com/nutrition/vitamin-b12-deficiency-symptoms

And...

https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/

And...

https://www.merckmanuals.com/home/disorders-of-nutrition/vitamins/thiamin-deficiency

And...

https://www.merckmanuals.com/home/disorders-of-nutrition/vitamins/thiamin-deficiency

And...

https://www.hormonesmatter.com/marginally-insufficient-thiamine-intake-oxalates/

And...

9 Signs and Symptoms of Vitamin B6 Deficiency

https://www.healthline.com/nutrition/vitamin-b6-deficiency-symptoms

And...

Niacin deficiency

https://bestpractice.bmj.com/topics/en-us/634

And...

Vitamin B6 Deficiency

https://www.ncbi.nlm.nih.gov/books/NBK470579/

And...

Dietary Vitamin D Increases Percentages and Function of Regulatory T Cells in the Skin-Draining Lymph Nodes and Suppresses Dermal Inflammation

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5031886/

 

[knitty kitty]

You'll want to take 300-500 mg of thiamine Hydrochloride with each meal or about every three to four hours.

The sticky sweat and flushing is what I get when blood glucose is high and there's not enough thiamine to burn glucose off for energy.  I'm Type Two diabetic.

I started off taking thiamine hydrochloride (thiamine HCl).  It's probably the cheapest form of thiamine if you're not inclined to shell out for the more expensive fat soluble forms of thiamine,  allithiamine and benfotiamine, to experiment with.  But because I reacted so positively to thiamine HCl and my body wanted more, I chose to go with allithiamine and benfotiamine.  

Allithiamine can cross the blood brain barrier (gets rid of the brain fog), while benfotiamine is beneficial for intestinal healing, blood glucose levels and hence diabetes. The thiamine HCl had made my urine smell fishy at 1000 mg a day because of the high sulfur content and how the body processes it leaving a methyl-byproduct that smells fishy, but I never got that with benfotiamine and allithiamine at high doses since they are fat soluble and the body processes it differently (without the fishy exhaust) and lower doses of these work because they can get into the cells easily without thiamine transporters.  

Thiamine transporters are special doorways into cells that only allow thiamine (and folate) into cells.  These shut down when there's a thiamine deficiency.  To get them to turn back on, you have to flood the system with thiamine so the concentration of thiamine moves from areas of higher concentration (outside the cells) to areas of lower concentration (inside the cells).  Allithiamine and benfotiamine can merge with the lipids in the cell membranes and get through that way, so more gets into the cells easily bypassing the transporters.  I found I could reduce my dosage with the fat soluble forms.  

Find which form works best for you.  

Remember to take some Magnesium (after meals) because thiamine in any of these forms needs magnesium to work properly.  Magnesium citrate glycinate is a form that is easily absorbed and doesn't have the harsh laxative effect some other forms have.  

[Rogol72]

On 3/8/2022 at 2:05 PM, knitty kitty said:

You'll want to take 300-500 mg of thiamine Hydrochloride with each meal or about every three to four hours.

The sticky sweat and flushing is what I get when blood glucose is high and there's not enough thiamine to burn glucose off for energy.  I'm Type Two diabetic.

I started off taking thiamine hydrochloride (thiamine HCl).  It's probably the cheapest form of thiamine if you're not inclined to shell out for the more expensive fat soluble forms of thiamine,  allithiamine and benfotiamine, to experiment with.  But because I reacted so positively to thiamine HCl and my body wanted more, I chose to go with allithiamine and benfotiamine.  

Allithiamine can cross the blood brain barrier (gets rid of the brain fog), while benfotiamine is beneficial for intestinal healing, blood glucose levels and hence diabetes. The thiamine HCl had made my urine smell fishy at 1000 mg a day because of the high sulfur content and how the body processes it leaving a methyl-byproduct that smells fishy, but I never got that with benfotiamine and allithiamine at high doses since they are fat soluble and the body processes it differently (without the fishy exhaust) and lower doses of these work because they can get into the cells easily without thiamine transporters.  

Thiamine transporters are special doorways into cells that only allow thiamine (and folate) into cells.  These shut down when there's a thiamine deficiency.  To get them to turn back on, you have to flood the system with thiamine so the concentration of thiamine moves from areas of higher concentration (outside the cells) to areas of lower concentration (inside the cells).  Allithiamine and benfotiamine can merge with the lipids in the cell membranes and get through that way, so more gets into the cells easily bypassing the transporters.  I found I could reduce my dosage with the fat soluble forms.  

Find which form works best for you.  

Remember to take some Magnesium (after meals) because thiamine in any of these forms needs magnesium to work properly.  Magnesium citrate glycinate is a form that is easily absorbed and doesn't have the harsh laxative effect some other forms have.  

I'm taking 100mg of Thiamine HCL three times per day.

How much Benfothiamine and/or Allithiamine is recommended per day?

[knitty kitty]

1 hour ago, Rogol72 said:

I'm taking 100mg of Thiamine HCL three times per day.

How much Benfothiamine and/or Allithiamine is recommended per day?

Because Allithiamine and Benfotiamine are fat soluble, they get into the cells differently than thiamine HCL, so you might find a lower dose of these works for you.  

I really had to be a guinea pig and try different amounts.  I have Type Two Diabetes, (diabetics are low in thiamine), so currently I take Benfotiamine, 250 mg per capsule with thiamine hydrochloride 50 mg with each meal.  Benfotiamine helps with diabetes and healing the intestines.

I take Allithiamine (50 mg twice a day) because my brain functions better.  Allithiamine can cross the blood brain barrier better than benfotiamine.  

You really have to experiment what's right for you.  If you start feeling worse, stick with it.  There may be some feeling worse before you feel better as your body gears up to function properly with plenty of thiamine.  This is called "thiamine paradox".

Here's some helpful articles from Dr. Lonsdale...

https://www.hormonesmatter.com/navigating-thiamine-supplements/

And...

https://www.hormonesmatter.com/ttfd-thiamine-derivative/

 

Keep us posted on your progress!

[Rogol72]

On 4/22/2022 at 7:48 PM, knitty kitty said:

Because Allithiamine and Benfotiamine are fat soluble, they get into the cells differently than thiamine HCL, so you might find a lower dose of these works for you.  

I really had to be a guinea pig and try different amounts.  I have Type Two Diabetes, (diabetics are low in thiamine), so currently I take Benfotiamine, 250 mg per capsule with thiamine hydrochloride 50 mg with each meal.  Benfotiamine helps with diabetes and healing the intestines.

I take Allithiamine (50 mg twice a day) because my brain functions better.  Allithiamine can cross the blood brain barrier better than benfotiamine.  

You really have to experiment what's right for you.  If you start feeling worse, stick with it.  There may be some feeling worse before you feel better as your body gears up to function properly with plenty of thiamine.  This is called "thiamine paradox".

Here's some helpful articles from Dr. Lonsdale...

https://www.hormonesmatter.com/navigating-thiamine-supplements/

And...

https://www.hormonesmatter.com/ttfd-thiamine-derivative/

 

Keep us posted on your progress!

The Thiamine HCL has made a difference, I feel more alert. Benfotiamine is not readily available in Ireland, got to get it from the UK. Caffeine of any description does not agree with me, tea or coffee or chocolate etc ... I get really agitated from it ... even decaf is not safe, must be the tannins in tea. I test certain foods out every now and then. I had a spring onion in my salad this evening and it did a number on my HH! More agitation!

[Posterboy]

18 hours ago, Rogol72 said:

The Thiamine HCL has made a difference, I feel more alert. Benfotiamine is not readily available in Ireland, got to get it from the UK. Caffeine of any description does not agree with me, tea or coffee or chocolate etc ... I get really agitated from it ... even decaf is not safe, must be the tannins in tea. I test certain foods out every now and then. I had a spring onion in my salad this evening and it did a number on my HH! More agitation!

Rogol72 et Al,

I just wanted to say Knitty Kitty has put you on a good path.

A Thiamine deficiency is woefully overlooked.

Here is a nice overall summary of the many ways a thiamine deficiency can show up in the chronically ill.

https://pubmed.ncbi.nlm.nih.gov/21912244/

quoting the whole abstract for easy review.

Thiamine supplementation in the critically ill

William Manzanares  1 , Gil Hardy

Affiliations

PMID: 21912244

DOI: 10.1097/MCO.0b013e32834b8911

Abstract

"Purpose of review: To summarize the properties of thiamine and evaluate current evidence on thiamine status and supplementation, for different populations of critically ill patients.

Recent findings: Thiamine, in the form of thiamine pyrophosphate, is a critical co-factor in the glyocolysis and oxidative decarboxylation of carbohydrates for energy production. Different studies have shown that critical illness in adults and children is characterized by absolute or relative thiamine depletion, which is associated with an almost 50% increase in mortality. Thiamine deficiency should be suspected in different clinical scenarios such as severe sepsis, burns, unexplained heart failure or lactic acidosis, neurological disorder in patients with previous history of alcoholism, starvation, chronic malnutrition, long-term parenteral feeding, hyperemesis gravidarum, or bariatric surgery. Nonetheless, thiamine supplements are not routinely given to critically ill patients. Clinicians should be able to suspect and recognize risk factors for the occurrence of severe neurological disorders secondary to thiamine deficiency, as early treatment can prevent the appearance of permanent neurological damage.

Summary: Symptoms and signs associated with thiamine deficiency lack sensitivity and specificity in critically ill patients. Consequently, depletion is frequently unrecognized and underdiagnosed by clinicians. Potentially deleterious consequences of thiamine depletion should be avoided by early and appropriate supplementation."

But it doesn't benefit the doctor's any to admit a Vitamin could be helpful???  By definition (at least in laymen's terms).....something the body/life needs in a minimum amount without which we become sick...

Here is another article that summarizes well how "Doctor's" specifically need to "Awaken" to the ways Thiamine supplementation can  help the Chronically and Critically ill....

https://awaken.com/2021/02/the-overlooked-vitamin-that-improves-autoimmune-disease-and-autonomic-dysfunction/

I hope this is helpful good luck on your continued journey!

The "Awaken" article is a little long.....but very thorough and well worth your time!

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

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

Posterboy by the grace of God,

[Rogol72]

1 hour ago, Posterboy said:

Rogol72 et Al,

I just wanted to say Knitty Kitty has put you on a good path.

A Thiamine deficiency is woefully overlooked.

Here is a nice overall summary of the many ways a thiamine deficiency can show up in the chronically ill.

https://pubmed.ncbi.nlm.nih.gov/21912244/

quoting the whole abstract for easy review.

Thiamine supplementation in the critically ill

William Manzanares  1 , Gil Hardy

Affiliations

PMID: 21912244

DOI: 10.1097/MCO.0b013e32834b8911

Abstract

"Purpose of review: To summarize the properties of thiamine and evaluate current evidence on thiamine status and supplementation, for different populations of critically ill patients.

Recent findings: Thiamine, in the form of thiamine pyrophosphate, is a critical co-factor in the glyocolysis and oxidative decarboxylation of carbohydrates for energy production. Different studies have shown that critical illness in adults and children is characterized by absolute or relative thiamine depletion, which is associated with an almost 50% increase in mortality. Thiamine deficiency should be suspected in different clinical scenarios such as severe sepsis, burns, unexplained heart failure or lactic acidosis, neurological disorder in patients with previous history of alcoholism, starvation, chronic malnutrition, long-term parenteral feeding, hyperemesis gravidarum, or bariatric surgery. Nonetheless, thiamine supplements are not routinely given to critically ill patients. Clinicians should be able to suspect and recognize risk factors for the occurrence of severe neurological disorders secondary to thiamine deficiency, as early treatment can prevent the appearance of permanent neurological damage.

Summary: Symptoms and signs associated with thiamine deficiency lack sensitivity and specificity in critically ill patients. Consequently, depletion is frequently unrecognized and underdiagnosed by clinicians. Potentially deleterious consequences of thiamine depletion should be avoided by early and appropriate supplementation."

But it doesn't benefit the doctor's any to admit a Vitamin could be helpful???  By definition (at least in laymen's terms).....something the body/life needs in a minimum amount without which we become sick...

Here is another article that summarizes well how "Doctor's" specifically need to "Awaken" to the ways Thiamine supplementation can  help the Chronically and Critically ill....

https://awaken.com/2021/02/the-overlooked-vitamin-that-improves-autoimmune-disease-and-autonomic-dysfunction/

I hope this is helpful good luck on your continued journey!

The "Awaken" article is a little long.....but very thorough and well worth your time!

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

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

Posterboy by the grace of God,

Thanks @Posterboy and @knitty kitty,

All great info. I'll certainly look into it. I came across a very interesting article about SIBO and the connection to Sulfur ...

https://www.metagenicsinstitute.com/pulse_patrol/plp-eps-5-sibo-sulfur/

... in it they discussed how we Northern Europeans may not deal with sulfur very well in the absence of trace minerals ... especially Molybdenum. I'm now taking a trace mineral supplement.

It's a jigsaw puzzle but the pieces are beginning to fit together now!

 

[Posterboy]

14 minutes ago, Rogol72 said:

Thanks @Posterboy and @knitty kitty,

All great info. I'll certainly look into it. I came across a very interesting article about SIBO and the connection to Sulfur ...

https://www.metagenicsinstitute.com/pulse_patrol/plp-eps-5-sibo-sulfur/

... in it they discussed how we Northern Europeans may not deal with sulfur very well in the absence of trace minerals ... especially Molybdenum. I'm now taking a trace mineral supplement.

It's a jigsaw puzzle but the pieces are beginning to fit together now!

 

Rogol72,

You have found good research on the Molybdenum it a master "detoxifier" trace mineral and will be depleted in with SIBO or if someone has Candida etc.

Here are some resources that might help you.  Eon Nutrition has in the UK has done great work on SIBO.

https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

https://www.eonutrition.co.uk/post/got-sibo-here-s-why-you-need-to-get-your-thiamine-status-checked 

But all these great websites stand on the shoulders of Dr. Derrick Lonsdale.

He (is mostly retired due to age) and mostly (She) Dr. Chandler Marrs runs the Hormones Matter website.

Here is a quick google search on their vast knowledge about Thiamine.....

https://www.hormonesmatter.com/beyond-deficiency-thiamine-metabolic-stimulant/#:~:text=Thiamine is functioning as a metabolic stimulant to,whole bunch of other stuff%2C make sense.

If you want to check out my story see my Posterboy blog's by searching on Celiac.com for the Posterboy and many threads and blog posts will come up.

Here is one posterbboy  blog post in particular that might be of help too you most about how to supplement with Thiamine for the best outcomes....

quoting from the blog post....

"For many taking an Enzymic B-Complex with Benfotiamine (preferably with Magnesium Glycinate or Magnesium Citrate with meals) for  3 to 6 months when taken with meals will be enough, for some 6 months or longer might be needed.....

you  decide the Season and the times that is best for you!))"

..... quoting again read the whole blog post for yourself when you have the time.....but I warn in you advance I tend to ramble a little...

"I have been doing Posterboy blog posts every so often now for a while now to share my experience with supplementation.

I have settled on the fact that many of the existing GI issues can triggered by existing nutritional deficiencies.

((I think most people must think I still take Niacinamide (Niacin etc.) or Thiamine (Vitamin B1) or a B-complex.....I do not now take any of these things. " now but I did for a Season of Time!!!

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

I only took them for a Season in Time and the reason for the name of this Posterboy blog post.

Thanks be to God who helped me to see these things.  And why I can share now......There is hope....even if it feels faint at times.

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”

I whole heartily recommend Knitty Kitty to you.....she is the Celiac.com site's/forum resident Thiamine expert and she has learned her lesson's well through experience!

Don't expect me to be on here too often......I am moving on to more spiritual matters in my life but since I was already following this thread......I felt I had to respond and give you encouragement!!!

You won't find a better champion for YOU and Thiamine on Celiac.com she can really be of great help too you!

Posterboy by the grace of God,

[knitty kitty]

For Reference...

The one thing that made the biggest difference for me was taking high dose Thiamine Vitamin B1.  Yes, I was taking a multivitamin and still had symptoms.

Blood tests for vitamin levels are not an accurate measurement of the level of vitamins inside the tissues, organs and muscles of the body where the vitamins are actually utilized.  Blood tests for vitamin levels are reflective of how much you have consumed of that vitamin within the past twenty-four to forty-eight hours.  You should be off all vitamin and mineral supplements for six to eight weeks before having your blood levels tested.  Otherwise you are simply getting a measurement of the supplements you have consumed.

The brain controls blood levels of certain vitamins and minerals to supply the brain itself and major organs like the heart and lungs.  The body will take needed vitamins from the stores in the tissues and put them into the bloodstream to supply the brain.  The tissues, organs, nerves and muscles will be on minimum rations or be outright deficient.  So while a test may not show a deficiency in the blood, there is a functional deficit within the tissues.  

Thiamine is utilized by every cell in the body.  In one day, our brains can use as much Thiamine just thinking at a desk job as a marathon runner's muscles would use in a race.  

Thiamine is necessary for nerves to send electrical signals to our brains.  Thiamine is needed to make and maintain the myelin sheath that surrounds the nerve, much like colored plastic coatings on electrical wires, so the nerve impulse can travel to the brain.  

Lots of Thiamine is used in the part of the brain that controls things we don't have to consciously think about like adjusting our breathing rate, digesting food, and keeping our balance.  The fight or flight response is wired through this part of the brain.  The fight or flight response can be easily triggered in thiamine insufficiency resulting in depression, anxiety, panic attacks and PTSD.  

When there's an insufficiency in Thiamine, the special transporters that let thiamine into the cells shut down.  In order to turn the transporters back on, high doses of thiamine are taken so that thiamine can get into the cells by passive diffusion (think cattle stampede).  

High Dose Thiamine is 500 - 1500 mg/per day of Thiamine Hydrochloride.  Benfotiamine or Allithiamine are fat soluble forms of thiamine that are especially helpful with the brain and nerve function. 

To function properly, Thiamine needs its friends, Magnesium, Niacin, and Riboflavin.  Riboflavin works with Pyridoxine, Folate and Cobalamine.  Deficiencies in these vitamins can also contribute to peripheral neuropathy, gait issues, balance issues, and brain health issues (mental health).  So taking a B Complex supplement and Magnesium citrate along with high dose Thiamine is essential.

You can go to my blog to read my experiences with thiamine deficiency.  Suffice it to say, I was given the gamut of antidepressants and therapy over the years, but nothing worked as well as correcting my Thiamine deficiency.  Yes, you can have a subclinical deficiency or insufficiency for years.  Correcting nutritional deficiencies caused by undiagnosed Celiac Disease is instrumental in regaining physical and mental health.  

You can find more information about Thiamine here...

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

and here....

https://www.hormonesmatter.com/what-is-thiamine-to-energy-metabolism/

[Rogol72]

6 hours ago, knitty kitty said:

For Reference...

The one thing that made the biggest difference for me was taking high dose Thiamine Vitamin B1.  Yes, I was taking a multivitamin and still had symptoms.

Blood tests for vitamin levels are not an accurate measurement of the level of vitamins inside the tissues, organs and muscles of the body where the vitamins are actually utilized.  Blood tests for vitamin levels are reflective of how much you have consumed of that vitamin within the past twenty-four to forty-eight hours.  You should be off all vitamin and mineral supplements for six to eight weeks before having your blood levels tested.  Otherwise you are simply getting a measurement of the supplements you have consumed.

The brain controls blood levels of certain vitamins and minerals to supply the brain itself and major organs like the heart and lungs.  The body will take needed vitamins from the stores in the tissues and put them into the bloodstream to supply the brain.  The tissues, organs, nerves and muscles will be on minimum rations or be outright deficient.  So while a test may not show a deficiency in the blood, there is a functional deficit within the tissues.  

Thiamine is utilized by every cell in the body.  In one day, our brains can use as much Thiamine just thinking at a desk job as a marathon runner's muscles would use in a race.  

Thiamine is necessary for nerves to send electrical signals to our brains.  Thiamine is needed to make and maintain the myelin sheath that surrounds the nerve, much like colored plastic coatings on electrical wires, so the nerve impulse can travel to the brain.  

Lots of Thiamine is used in the part of the brain that controls things we don't have to consciously think about like adjusting our breathing rate, digesting food, and keeping our balance.  The fight or flight response is wired through this part of the brain.  The fight or flight response can be easily triggered in thiamine insufficiency resulting in depression, anxiety, panic attacks and PTSD.  

When there's an insufficiency in Thiamine, the special transporters that let thiamine into the cells shut down.  In order to turn the transporters back on, high doses of thiamine are taken so that thiamine can get into the cells by passive diffusion (think cattle stampede).  

High Dose Thiamine is 500 - 1500 mg/per day of Thiamine Hydrochloride.  Benfotiamine or Allithiamine are fat soluble forms of thiamine that are especially helpful with the brain and nerve function. 

To function properly, Thiamine needs its friends, Magnesium, Niacin, and Riboflavin.  Riboflavin works with Pyridoxine, Folate and Cobalamine.  Deficiencies in these vitamins can also contribute to peripheral neuropathy, gait issues, balance issues, and brain health issues (mental health).  So taking a B Complex supplement and Magnesium citrate along with high dose Thiamine is essential.

You can go to my blog to read my experiences with thiamine deficiency.  Suffice it to say, I was given the gamut of antidepressants and therapy over the years, but nothing worked as well as correcting my Thiamine deficiency.  Yes, you can have a subclinical deficiency or insufficiency for years.  Correcting nutritional deficiencies caused by undiagnosed Celiac Disease is instrumental in regaining physical and mental health.  

You can find more information about Thiamine here...

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

and here....

https://www.hormonesmatter.com/what-is-thiamine-to-energy-metabolism/

 

Great info. Thank You. At a follow up appointment with my functional practitioner, she said to focus on get plenty of polyphenols because they feed the "keystone bacteria" in the gut ... Akkermansia Muciniphila and Faecalibacterium prausnitzii. After a few weeks of a kale and berry smoothie every morning, I can feel a big difference and histamine issues are dissipating ... the bucket is emptying! Dr. Brooke Goldner has a protocol she developed for reversing her Lupus.

[heyitsme]

On 8/22/2020 at 8:51 AM, knitty kitty said:

Elevated liver enzymes and thiamine deficiency

My doctor accused me of lying about drinking, but I do not drink alcohol. I have never been able to tolerate it.

It turned out to be Thiamine Deficiency! 

Alcohol consumption can cause thiamine deficiency because alcohol inhibits thiamine absorption in the intestines.  Abnormal liver enzymes occurs in alcoholism.

That's why a doctor may ask if you drink alcohol.   A thiamine deficiency will cause abnormal liver enzymes similar to those in alcoholism.

You've got Celiac Disease which causes malabsorption which results in vitamin deficiencies.  The Gluten free diet is deficient or low in certain vitamins and minerals.  The longer you're on the gluten free diet, the more likely you can develop nutritional deficiencies.

Thiamine is a water soluble B vitamin (B 1 in the group of eight essential B vitamins).  Thiamine is needed by every cell in your body to provide energy and enzymes used in body functions.

You can have a chronic low level of thiamine that worsens over time.  As time goes on and your thiamine level gets lower, your body can't function as well and health problems begin to manifest.

Your body doesn't store Thiamine for very long.  You can use up your thiamine stores in as little as nine days to two weeks.  You need more thiamine when under stress, both physical stress like when you're ill and emotional stress, if you are physically active, live in hot climate, have a desk job that requires lots of thinking (your brain needs energy from thiamine to think - that's why you can feel exhausted after sitting at a desk all day), and when you eat a lot of carbohydrates.  

If you've been eating a lot of carbohydrates, you can become low in thiamine because so much thiamine is needed to convert those carbohydrates into energy.  Gluten free versions of cookies and processed snacks are not required to be enriched with vitamins lost in processing like the gluten containing ones are.  

High dose thiamine (300 mg thiamine a day) is needed to replenish your thiamine.  Refer your doctor to the book by Dr. Derrick Lonsdale and Dr. Chandler Marrs entitled "Thiamine Deficiency Disease, Dyautonomia and High Calorie Malnutrition".  You can read more about the effects of thiamine deficiency on Dr. Marrs' website www.hormonesmatter.com.

Here's an article on nutrient deficiencies in Celiac Disease on a gluten free diet...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

Here's an article about liver enzymes in alcoholism which explains how thiamine works...

https://academic.oup.com/alcalc/article/44/2/177/185522

Your doctor needs to think outside the box.  Thiamine deficiency does not only occur in alcoholism.  The deficiency can occur in Celiac Disease.  I know.  I lived through it.  

Please have your doctor test for thiamine deficiency using the erythrocyte transketolase test.  

Keep us updated on your progress.

Hope this helps!

How to do erythrocyte transketolase test? I mean it's not something that is usually done in standard labs. How to find somebody who does it?

[knitty kitty]

@heyitsme,

Ask your doctor for the Erythrocyte Transketolase test.  

I think some on-line labs have the test available. 

Because testing for Thiamine is so expensive and takes such a long time time, the World Health Organization (WHO) says the best way to test for Thiamine deficiency is to take high dose Thiamine and look for improvement in health.  

I started taking high doses (500 mg) of Thiamine Hydrochloride.  I had improvement within an hour.  I had more improvements by taking Allithiamine (neurological problems) and Benfotiamine (digestive, depression, and anxiety problems).  

General doses of Various forms of Thiamine

Thiamine Hydrochloride 500 to 2000 mg

Benfotiamine 300 - 1800 mg 

Allithiamine 50 - 1500 mg

Adjust your doses.  Everyone is different and has different levels of deficiency.

There's no toxicity level set for Thiamine because it's safe and nontoxic.  

You can spread your doses out over the day, but avoid taking close to bedtime as Thiamine can interfere with falling asleep.  

Remember to take Magnesium so Thiamine can work. 

B Complex containing thiamine and the other B vitamins should be taken as well.  Thiamine works with each of the B vitamins to make energy and life sustaining enzymes.  If you're low in one, you're probably low in the others, too.  

I took a B 50 Complex twice a day with meals.  

As always, talk to your doctors about supplementing while healing to counteract the malabsorption of Celiac Disease.