Terrible Neurological Symptoms

[Jeanette P]

On 11/21/2021 at 5:24 AM, HectorConvector said:

Just as an example of what I'm dealing with I've just had lunch which was a small snack of gluten-free pitta bread and spread on it and already had two violent jolts of burning nerve pain across random parts of my right foot. This will continue to get worse throughout the day. Every day.

This may or may not help but I have some of the same problems as you do with eating.  I had to do the elimination diet (BRAT diet) and add one food at a time.  I have found that I have horrible pain if I eat any salt (that includes cheese, ketchup, even turkey/meats with salt), seasonings that may have pepper or any thing spicy including paprika, store bought gluten free products (I think because they contain rice flour and rice has heavy metal in it), caffeine (I do drink a cup or two of decaf coffee daily - Peets uses only water to decaffeinate their beans not chemicals), alcohol, fish due to mercury content (except can have salmon or smaller fish like tilapia), chemicals/additives/colors added to foods and any processed foods.  This diet has made it difficult for me to maintain my weight but it helps that I can eat sugar so I eat ice cream (hoping my sugar levels don't spike now!).  I found I would rather be thin than suffer 24/7.  One other thing I have noticed is that doing yoga or any stretching/strengthening/calisthenics exercises help almost immediately.

[Scott Adams]

Burning nerve pain can be a sign of nutrient deficiencies which are extremely common in those with celiac disease. 

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

[knitty kitty]

@Jeanette P,

Welcome to the forum!

Please look into nutritional deficiencies which commonly occur in Celiac Disease.

Your reaction to salt in your diet may signal insufficiencies in potassium, magnesium, and calcium.  These minerals along with sodium work together in muscles and nerves.  If not balanced, an insufficiency in any of these minerals can present as pain and cramps.

Arsenic and mercury are heavy metals which are cheated by Thiamine B1.  Thiamine binds with heavy metals like arsenic and mercury, making them harmless and easily passing out of the body in feces.  Thiamine also helps prevent damage to DNA caused by radiation.  Thiamine supplementation has been handed out when the Russians had control of the nuclear power plants in Ukraine.  And at Chernobyl, Three Mile Island, and Fukushima.  

If a high carbohydrate diet is being eaten, more Thiamine is required to turn carbohydrates into energy.  Without sufficient thiamine, excessive carbohydrates are turned into fat and burned off quickly.  Not being able to gain weight is a symptom of Thiamine insufficiency.

Certain foods contain chemicals (thiaminases) that break Thiamine down preventing thiamine's ability to function.  These chemicals that destroy thiamine occur in fish and drinks like coffees and black tea, even if decaffeinated.  Caffeine will destroy Thiamine, too.

Please be aware that dairy consumption can cause continuing inflammation and damage to the small intestine in some people.  

The Autoimmune Paleo Diet is beneficial in reducing inflammation and promoting healing in the gastrointestinal tract.  

Supplementing with essential nutrients like the B Complex vitamins and minerals are beneficial during healing.  Remember you are no longer getting the vitamins added to gluten containing products like wheat bread.  You need to replace those with supplements because gluten free facsimile foods are not required to add vitamins and minerals like is mandated by law for gluten containing products.

Please talk to a nutritionist or dietician who can guide you through a nutritionally dense gluten free diet! 

Sources for further reading...

Potassium...

https://www.healthline.com/nutrition/potassium-deficiency-symptoms#bottom-line

Magnesium...

https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

Thiamin(e): the spark of life

https://pubmed.ncbi.nlm.nih.gov/22116701/

Malnutrition in Obesity: Is It Possible?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8820192/

Best wishes for your recovery!

[HectorConvector]

Latest update.

So after even more time I've become more sure about what the cause of the symptoms mentioned throughout this thread actually are.

Nerve pain in feet/lower legs: caused by exercise, particularly weight bearing. Repeat experiments with weight training have now proven this, and I got rid of my weights set and stopped going to the gym. Any attempt to do weight bearing exercise, even such as bodyweight squats, will cause a rapid return of symptoms. 

Pain in head/behind the eyes after eating: This was a food sensitivity problem with nuts and eggs. Removing these completely has almost stopped this entirely. 

[Scott Adams]

I only wonder if the weight training was the actual cause of the nerve pain issues, or just something that exacerbated the symptoms? It seems like something must be irritating your nerves, and it seems strange that lifting weights would be the ultimate cause.

I initially had an intolerance to chicken eggs, but could tolerate duck eggs without issues:

 

[HectorConvector]

41 minutes ago, Scott Adams said:

I only wonder if the weight training was the actual cause of the nerve pain issues, or just something that exacerbated the symptoms? It seems like something must be irritating your nerves, and it seems strange that lifting weights would be the ultimate cause.

I initially had an intolerance to chicken eggs, but could tolerate duck eggs without issues:

 

The pain preceded the weight training, but it was very slight until I started weight training. The weight training exacerbated it, but MASSIVELY. Basically took it out of control and to the point of heavy medication. At first I thought it was my higher calorie diet causing the pain to be worse but turns out it wasnt that.

[Blue-Sky]

There are some similarities between CFS and what you describe on this thread, but CFS might cover a broad range of different conditions.

https://www.youtube.com/watch?v=YH1wn3D9HNg

At the 20 minute mark it talks about how exercise can trigger an autoimmune response. (The drug that is mentioned in the video unfortunatlly failed the last trial.)

https://www.healthrising.org/blog/2016/03/01/lactate-fibromyalgia-chronic-fatigue-syndrome/

During digestion the stomach muscles close all the way, allowing for the stomach to become more acidic. And then small amounts of chime are allowed into the intestine in a controlled manner. Abnormal stomach sphincter motion may contribute to ibs symptoms. In dumping syndrome, insulin is released too soon into the blood resulting in major problems like low blood sugar. Changes in ph levels are also used for immune signalling during digestion.

There are tons of nerves in the stomach and digestive track and digesting food might be similar in some way to lifting weights, which may explain some of the food sensitivities.

[Scott Adams]

This is very interesting, and I hadn't heard of this exercise-induced condition before. 

[Wheatwacked]

I think I've had almost every type of foot pain there is.  Started with Plantar Fasciitis, cure was gentle stretching of Achilles tendon in  a hot shower running down back and legs.  Somewhere along the way either my feet grew or my shoes shank. I've been wearing the same style and brand and size for ages, It got better for a while after trimming nails. Worse with cushiony inserts.  That improved with bigger shoes.  I get toe cramps after sleeping for two hours, and have to get up until they relax.  When I drink 20 ounces of milk before bed lately I get to sleep close to three hours at a time before something else wakes me.  20 ounces of milk (610 ml) has 810 mg of pottassium.  The Adequate Intake for adult is 2400 mg; Daily Value (%DV on the can label) is based on 4700 mg = 100%DV).  Assuming no Potassium Saving medications there is no Safe Upper Limit set for food sourced, but there is for supplements at 100 mg. The equivalent of a cup of coffee.  

        Causes and treatment of foot cramp  "People at all fitness levels, from beginners to top athletes, can experience muscle cramps if they push their muscles too far compared with their usual activity levels... If a person exerts themselves too forcefully during their workout or sports practice, overworked muscles can spasm more and cause foot cramps...  When potassium levels dip too low, a person may experience cramping in the feet and legs."

        Potassium Fact Sheet for Health Professionals  "  According to data from the 2013–2014 National Health and Nutrition Examination Survey (NHANES), the average daily potassium intake from foods is 2,423 mg for males aged 2–19, and 1,888 mg for females aged 2–19 [27]. In adults aged 20 and over, the average daily potassium intake from foods is 3,016 mg for men and 2,320 mg for women.

[HectorConvector]

Update about this condition.

Into late 2025/early 2026 the symptom, which is a clear stocking/glove pattern (it is now frequent in my hands as well as feet and lower legs) has basically outgrown the medication (Duloxetine, now at max dose of 120mg/day). I notice that strong pain occurs when my mind de-focuses in particular, then if I focus awareness again, the pain becomes inhibited. Pain is much worse after meals as has always been the case, and particularly after exercising for some time - the effect is accumulative over weeks. Even when my energy is excellent with no fatigue. Infact, last year doing cycling, it was the increased pain alone that made me have to reduce what I did. I got very fit and energetic, but had awful stabbing foot pains on the surface of the big toe, or sometimes heel, or anywhere in the skin of the foot and sometimes lower leg. These are not muscle pains or internal to the foot or leg. They are happening on the surface.

I've had a referral back to the neurology department at my local hospital but the waiting list is a year long. I went back to the doctor who has been updated on everything and has looked over previous and recent blood tests, skin biopsy, and other tests. All tests reveal there is no nerve damage. Infact my nerve density in the biopsy showed much better than average nerve health. There are no nutritional deficiencies and I regularly supplement my diet with Vitamin D, B1 and B2, and Magnesium Glycinate. None of these have helped at all. The pain syndrome just outgrows everthing. It has now become investigated as a chronic pain syndrome with severe central sensitization. It takes less and less provocation to produce the same symptoms, which is indicative of a fault in the descending inhibition of pain mechanism and nociplasticity in the amplification of pain signals. As such I'm being referred to a pain specialist and will see what they recommend.

[HectorConvector]

An interesting note (though not something that I recommend) is that in the last couple of winters before this one, I drank tons of alcohol because I found it reveresed the pain substantially. It seemed it muted it, then I stopped worrying about it, and so on, so that it was reversing the sensitization cycle. I mean, strong alcohol. Not a few beers. Talking 25% ABV stuff and well beyond any limit anyone has ever seen. Yes, bad for other reasons. But it was interesting, that even after stopping the alcohol (which I could do overnight, for some reason I don't get dependent) the nerve pain would stay "low" for a while, but then gradually ramp up again to where it was before. Obviously, that's not a long term solution as my liver would probably shrivel up and I'd go broke. So the pain clinic hopefully finds a better way to desensitize the condition.

[Scott Adams]

I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.

[knitty kitty]

4 hours ago, HectorConvector said:

Pain is much worse after meals as has always been the case, and particularly after exercising for some time - the effect is accumulative over weeks.

This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes. 

Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.  

Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use. 

Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.  

Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.  

Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results.

Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12. 

Hope this helps!

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/

P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.

Edited February 26 by knitty kitty
Added link, Post Script

[Jane02]

Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 

[Jane02]

Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 

[HectorConvector]

16 hours ago, knitty kitty said:

This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes. 

Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.  

Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use. 

Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.  

Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.  

Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results.

Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12. 

Hope this helps!

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/

P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.

These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have any other symptoms relevant to diabetes except for the nerve pain, which had been in existence for many years with "normoglycaemia", but we'll see.

In terms of my current diet: I get roughly 60% of my calories from fat and protein, and 40% from carbs (an estimation). I'm on currently about 2200 calories per day, which is too low for someone of my size, so I've been slowly losing weight that I want to put back on again. But I don't want to do that without using weights, which flare my pain up unfortunately. 

[knitty kitty]

@HectorConvector,

My blood glucose level would spike after I ate.  It wouldn't return to "normal" fasting blood glucose level for longer and longer.  Blood glucose level should return to normal an hour after eating.  Mine would take two hours, then three hours, then longer.  So over night fasting blood tests wouldn't necessarily be very high until they got really bad.  But the peripheral neuropathy would feel the worst while my glucose was too high.  My blood glucose meter confirmed this.  

On top of all that, my Celiac disease was still undiagnosed at the time, and I was suffering from malabsorption and nutritional deficiencies.  The deficiencies in B vitamins affected not just insulin production in the pancreas, but also the nerves in my extremities.  Nerves need B vitamins to maintain the myelin sheath protecting the nerves (like the plastic coating on electrical wires) when they fire.  When the myelin sheath is not maintained, that "pins and needles" feeling starts and increases as more of the sheath is damaged.  My parathesia progressed until the "pins and needles" went from my toes all the way up to my thighs.  

Without sufficient vitamins, I started slowly losing weight.  Our bodies will start using not only stored fat, but also tear down our own muscles to provide fuel for the body to stay functional.  

I hope you don't have pre-diabetes or diabetes.  Most diabetics have a thiamine deficiency.  

How much thiamine are you taking?  What form of Thiamine are you taking?  

Edited February 27 by knitty kitty
Typo correction

[HectorConvector]

1 hour ago, knitty kitty said:

@HectorConvector,

My blood glucose level would spike after I ate.  It wouldn't return to "normal" fasting blood glucose level for longer and longer.  Blood glucose level should return to normal an hour after eating.  Mine would take two hours, then three hours, then longer.  So over night fasting blood tests wouldn't necessarily be very high until they got really bad.  But the peripheral neuropathy would feel the worst while my glucose was too high.  My blood glucose meter confirmed this.  

On top of all that, my Celiac disease was still undiagnosed at the time, and I was suffering from malabsorption and nutritional deficiencies.  The deficiencies in B vitamins affected not just insulin production in the pancreas, but also the nerves in my extremities.  Nerves need B vitamins to maintain the myelin sheath protecting the nerves (like the plastic coating on electrical wires) when they fire.  When the myelin sheath is not maintained, that "pins and needles" feeling starts and increases as more of the sheath is damaged.  My parathesia progressed until the "pins and needles" went from my toes all the way up to my thighs.  

Without sufficient vitamins, I started slowly losing weight.  Our bodies will start using not only stored fat, but also tear down our own muscles to provide fuel for the body to stay functional.  

I hope you don't have pre-diabetes or diabetes.  Most diabetics have a thiamine deficiency.  

How much thiamine are you taking?  What form of Thiamine are you taking?  

My skin biopsy and MRI scan shows no signs of any type of nerve damage. Nothing consistent with demylination or peripheral nerve damage. On the contrary, the nerve function from the skin biopsy proved better than normal. I don't get any pins and needles or have any loss of nerve function. It's pain only. 

Thiamin I take is 100mg a day in tablet.

I used to test blood sugar a lot in the past, and it never correlated directly with the nerve pain. It has only correlated with increased exercise and stress. The after eating getting worse thing happens when the blood flow is directed to the stomach for digestion away from the peripheral areas, which is normal, but central sensitization has caused normal sensations to be turned into pain by the brain, according to the latest doctors, hence whey I am being referred to the pain clinic.

[HectorConvector]

2 hours ago, knitty kitty said:

@HectorConvector,

My blood glucose level would spike after I ate.  It wouldn't return to "normal" fasting blood glucose level for longer and longer.  Blood glucose level should return to normal an hour after eating.  Mine would take two hours, then three hours, then longer. 

I'm not sure what you're referring to as "normal" here - and is this something your doctor has mentioned (in bold)? As that isn't what any study or official information says.

According to diabetes UK and the British Heart Foundation, normal fasting blood sugar is 4.9-5.4mmol/L. Normal by 2 hours from the start of a meal is anywhere below 7.8mmol/L. Random (more than 2 hours after a meal) should be below 5.6mmol/L. 

Not in any study of normoglyceamic individuals does blood sugar go down to less than 5.4mmol/L one hour from the start of a meal, and I don't see such numbers being considered a limit for one hour post prandial in any official definition of normal blood sugar ranges anywhere. It is basically impossible even for the most metabolically healthy individual to have a blood sugar level anything like a fasting number 1 hour only after eating a high carb meal. This is also why medical standards use the 2-hour postprandial value, not 1 hour. Blood sugar normally spikes at about 1 hour after a high carb meal. 

For example this study shows that young, healthy normoglycaemic people experience a 1hr peak blood sugar level of about 6.5-7mmol/L before which the 2hr number returns to about 4.7mmol/L, slightly higher than the fasting number of that morning.

https://pmc.ncbi.nlm.nih.gov/articles/PMC2769652/?utm_source=chatgpt.com

Even a normal person isn't going to be seeing essentially fasting blood sugar numbers after any meal except for one with 0 carbohdrates contents.

[HectorConvector]

Evidence from normoglycaemic studies shows that healthy people peak at ~1 hour, and they then return to baseline in 2–3 hours, not 1. CGM shows normal post-meal rises even in metabolically healthy subjects. Clinical tests use the 2-hour value to judge normal glucose clearance. Therefore the 1-hour-back-to-fasting claim contradicts both physiology and clinical diagnostic standards.

[knitty kitty]

@HectorConvector,

Step off the gas.

I'm in the U. S.  That was what I remember my doctor telling me thirty years ago.  Things may have changed since then.  If I've "misremembered," I apologize.  I'm human.  Things are different on the other side of the pond.  Here we go by mg/dl.  The smaller incremental changes are more noticeable using mg/dl.   Also, I adopted a Ketogenic diet.  Ketogenic diets don't spike blood glucose as much, and therefore return to fasting levels sooner.  My own experience is my postprandial blood glucose level returned to fasting levels an hour after the end of a meal on a Ketogenic diet. 

I was asking if the thiamine you take is thiamine hydrochloride or Benfotiamine or Thiamine TTFD.  Thiamine Mononitrate is not well absorbed nor utilized by the body. 

I learned that amounts larger than 100 mgs of thiamine hydrochloride needs to be taken in thiamine deficiency.   500mgs thiamine hydrochloride is recommended by the World Health Organization for several days and look for health improvement.  Thiamine is safe and nontoxic even in higher amounts.

When thiamine is taken in high doses, there's a big change in energy availability, especially in the brain, where pain is registered.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function.  Thiamine has analgesic properties.  

I learned about high dose thiamine from Dr. Derek Lonsdale and Dr. Chandler Marrs through their website hormonesmatter.com.  I have taken high dose thiamine to correct my deficiency about fifteen years ago.  I could feel myself dying, I was so sick and in pain.  I was grasping at straws.  No harm, no foul, just to try it and see, right?  I tried it and that made all the difference.  High dose thiamine made astounding health improvements within a very short period of time for me.

 I wonder if 500 mg of thiamine hydrochloride would have the same effect on you.

Edited February 28 by knitty kitty
Typo correction

[HectorConvector]

1 hour ago, knitty kitty said:

@HectorConvector,

Step off the gas.

I'm in the U. S.  That was what I remember my doctor telling me thirty years ago.  Things may have changed since then.  If I've "misremembered," I apologize.  I'm human.  Things are different on the other side of the pond.  Here we go by mg/dl.  The smaller incremental changes are more noticeable using mg/dl.   Also, I adopted a Ketogenic diet.  Ketogenic diets don't spike blood glucose as much, and therefore return to fasting levels sooner.  My own experience is my postprandial blood glucose level returned to fasting levels an hour after the end of a meal on a Ketogenic diet. 

I was asking if the thiamine you take is thiamine hydrochloride or Benfotiamine or Thiamine TTFD.  Thiamine Mononitrate is not well absorbed nor utilized by the body. 

I learned that amounts larger than 100 mgs of thiamine hydrochloride needs to be taken in thiamine deficiency.   500mgs thiamine hydrochloride is recommended by the World Health Organization for several days and look for health improvement.  Thiamine is safe and nontoxic even in higher amounts.

When thiamine is taken in high doses, there's a big change in energy availability, especially in the brain, where pain is registered.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function.  Thiamine has analgesic properties.  

I learned about high dose thiamine from Dr. Derek Lonsdale and Dr. Chandler Marrs through their website hormonesmatter.com.  I have taken high dose thiamine to correct my deficiency about fifteen years ago.  I could feel myself dying, I was so sick and in pain.  I was grasping at straws.  No harm, no foul, just to try it and see, right?  I tried it and that made all the difference.  High dose thiamine made astounding health improvements within a very short period of time for me.

 I wonder if 500 mg of thiamine hydrochloride would have the same effect on you.

The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers.

In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong.

Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride.

Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal. 

 

 

 

[knitty kitty]

Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.  

Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.  

Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.  

The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.  

So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.  

Thiamine and benfotiamine: Focus on their therapeutic potential

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/

Edited February 28 by knitty kitty
Typo correction

[HectorConvector]

Awful terrible burning pains recently. Got suicidal thoughts from this crap yet again. I'm going to try doing low carb again as meat and veg type food has in the past reduced it. This is doing my head in. 

[Scott Adams]

I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.