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Fuelling exercise -corn and other gluten free grains


Gilly M

Recommended Posts

knitty kitty Grand Master

@Gilly M

Hello!  I am happy to hear you are making progress! 

I apologize for not responding sooner.  I was unavoidably detained.  The Universe threw me a curve ball.  LoL

Let's get to your questions...

Here are my questions to you if you are able to answer any/some/all...

1) I am only taking 50mg x 2 thaimine HCl right now.  When do you suggest I add in benfotiamine? 

Add in Benfotiamine, Allithiamine, or even Elliott Overton's Thiamax now.   These are the lipid-soluble forms of Thiamine.  You can start with lower doses and titrate up to higher doses gradually, as needed, keeping in mind "the thiamine paradox".  

I've found it beneficial to take flaxseed oil supplements at the same time.  Flaxseed oil supplements have special Omega Threes that help the brain function.  

I started with 100mg Th HCl 2 weeks ago but it was too much... 

Did you take it with food?  In refeeding syndrome, simple carbohydrates need to be given with thiamine.  

Molybdenum, a trace mineral, is required to make certain enzymes with Thiamine.  Adding a molybdenum supplements can help the body utilize thiamine better.

Do you recommend a brand for benfotiamine?

I like this kind... 100 mg here, but a 250 mg form is also available...

https://www.lifeextension.com/vitamins-supplements/item00920/benfotiamine-with-thiamine?gclid=EAIaIQobChMI-f2a7IWn_wIVp4ZMCh0_swbHEAQYAiABEgIYm_D_BwE

 

2) I only take a low dose B complex - eg 5-10mg of the other B vits, 24mcg B12, 300mcg biotin, 400mcg folate.  DO you think I should take more like a 50 B complex ie. higher doses of the other B vits?.  We spoke about before, that the other B vits are not needed in the same high quantities as the B1- but I feel that the 5-10mg are too small to support the B1.  What are your thoughts on this?  'm looking at "THORNE, Basic B complex" https://uk.iherb.com/pr/thorne-basic-b-complex-60-capsules/18791

It's common to have insufficiency in all the B vitamins, not just one.  Thiamine is the one that runs out the fastest because it is stored for the shortest period of time.  Supplementing with higher doses of all the B vitamins allows the cells to replenish their stores so everything is primed and ready to go.  Keep in mind that "recommended daily allowance" is based on "minimum daily requirement (to prevent disease)" originally set in the '30's and '40's.  Our diets and lifestyles have changed dramatically since then.  Scientists are finding higher doses of many of the B vitamins are beneficial.  

I prefer this one....

https://www.lifeextension.com/vitamins-supplements/item01945/bioactive-complete-b-complex?gclid=EAIaIQobChMI0-3yqoWn_wIVpDbUAR3EDgMzEAAYASAAEgLGp_D_BwE

 

3) I'm concerned my sleep quality has decreased.  Maybe due to lower carb.  Maybe due to the oxalate dumping.  Maybe due to electrolyte imbalances.  I'm taking about 400mg Mg citrate/malate/day.  And drinking coconut water, aiming to eat few servings of fruit to try to support the potassium. And salting food with sea salt. Dairy for my calcium needs.  Do you have any other suggestions to help the sleep while I make the changes.  Does my electrolyte regime look OK? How did/do you support your potassium/other electrolytes on the AIP diet?

Coconut water has diuretic and laxative properties that I don't care to have.  Commercial Coconut water frequently contains Sulfites.  I have Type Four Hypersensitivity to Sulfites, so I avoid foods high in Sulfites like shellfish and fermented foods.  I limit cruciferous veggies and potato chips. 

Sulfites stimulate mast cells to release histamine.  High histamine levels in the brain make us very alert and wide awake.  High histamine levels can cause hives and skin rashes in patches that move around. 

For sleep, I take Tryptophan, an amino acid found in dairy and turkey.  BUT Tryptophan can cause oxalate formation.  I'm curious if your oxalate dumping started after you added dairy back into your diet.  

Also for restful sleep, Passion Flower extract, and another amino acid, Theanine, are helpful.  Theanine is found in dark chocolate and Oolong tea.  (Wonderful excuse to eat more chocolate and enjoy a warm cuppa before bed.)

I like this water for electrolytes....

https://waiakea.com

 

4) Does the Marrs and Lonsdale book give detailed info on supplementation regimes/how long to continue them/how much etc?  I think I may invest in it.

It's not a how-to book.  There are lots of science-y discussions on how thiamine works and case studies, but there are chapters about high calorie malnutrition that you would find interesting.  Have you looked for it on Google Books?

5) I have read alot about the paradoxical reaction and I do think this is happening to me, even on only a very small amount of B1??

There's so much going on in our bodies all at once, it can be difficult to figure out what's doing which where. 

I think that you are not taking enough Thiamine Hydrochloride.  Thiamine HCl enters cells through special thiamine-only transporters.  These transporters shut down when there's a deficiency in thiamine.  There has to be a passive diffusion gradient for thiamine to enter the cells.  That happens at about 500 mg Thiamine HCl.  Lower doses are not as effective and improvements are not seen as consistently.

The fat soluble forms of Thiamine, (Allithiamine, Benfotiamine, TTFD, etc.) can enter cells by merging their lipid tail with the lipids in the cell membrane, so lower doses are required.  

You've got too many variables to keep track of easily with the dietary changes.  Do you keep a food journal?

The AIP diet eliminates lots of inflammatory foods that cause problems.  Once the body has calmed down, it's easier to see how the body reacts to foods and exercise.  

The AIP diet eliminates those nuts and seeds that are high in oxalates, and dairy which is very inflammatory.  I chose low histamine foods and low sulfite foods.  I included healthy fats, Omega Threes, flaxseed oil, olive oil and avocado oil.  Our bodies run on both carbohydrates and fats.  The AIP diet is temporary.  Eliminating grains and rice for three or four weeks will give the body a respite.  

Muscles and fuel...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3005844/

I am so pleased that you are sharing your journey with us! 

You've really done your homework!  

 


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Russ H Community Regular
13 hours ago, Gilly M said:

Hi Russ,

Thank you for your message.  I was eating loads of high oxalate foods when I stopped eating dairy for a while- in an attempt to acquire calcium.  But I then learnt that a lot of these foods are only high in calcium as a plant defense mechanism to protect themselves from the oxalate toxicity- and the actual availability after consumption is very low.  Spinach, sweet potatoes, almonds, dark chocolate, chia seeds, raspberries, swiss chard- I was eating these in abundance!

I was also a competitive athlete who trained a lot.   I then experienced a kind of "refeeding" situation where I had to stop training and eat more food to try to recover from energy deficiency issues in my body.  This helped in some ways but in the process I now think I depleted my B1 even further (was likely already low due to training and a high carb diet)  I am also not sure I tolerate gluten which may/may not have exacerbated gut permeability.  I have learnt lack of B1 increases endogenous oxalates.

Anyway, long story short, I stopped these high oxalate foods, started B1, stopped gluten.  My stools are now flooded with grain like material which is calcium oxalate crystals I am sure!!!(not had a stool test done but I am awaiting OAT urine testing which also gives some indication of oxalate burden)  I also get skin rashes which I have read is my skin's way of trying to excrete the oxalate.  I think I am oxalate dumping and will likely have to eat a few more oxalate foods again to slow it down.  And increase electrolytes which are depleted by oxalate dumping.

I would never have believed this was what was making me ill the past 4 years (I thought it was chronic Lyme)- time will tell but I do seem to be improving- albeit ups and downs as dumping occurs and the "paradoxical reaction" to B1 also occurs.  Knitty Kitty (celiac.com site member) introduced me to this world of B1 and oxalates - a HUGE thank you to her.

Such a steep learning curve and eye opening to say the least!

 

 

I think that it is very unlikely that you are passing visible calcium oxalate crystals in your stool. It is passed in urine. The vast majority of people do not have a problem handling oxalic acid. 'Oxalate dumping' does not exist.

Gilly M Explorer
On 6/3/2023 at 5:41 PM, knitty kitty said:

@Gilly M

Hello!  I am happy to hear you are making progress! 

I apologize for not responding sooner.  I was unavoidably detained.  The Universe threw me a curve ball.  LoL

Let's get to your questions...

Here are my questions to you if you are able to answer any/some/all...

1) I am only taking 50mg x 2 thaimine HCl right now.  When do you suggest I add in benfotiamine? 

Add in Benfotiamine, Allithiamine, or even Elliott Overton's Thiamax now.   These are the lipid-soluble forms of Thiamine.  You can start with lower doses and titrate up to higher doses gradually, as needed, keeping in mind "the thiamine paradox".  

I've found it beneficial to take flaxseed oil supplements at the same time.  Flaxseed oil supplements have special Omega Threes that help the brain function.  

I started with 100mg Th HCl 2 weeks ago but it was too much... 

Did you take it with food?  In refeeding syndrome, simple carbohydrates need to be given with thiamine.  

Molybdenum, a trace mineral, is required to make certain enzymes with Thiamine.  Adding a molybdenum supplements can help the body utilize thiamine better.

Do you recommend a brand for benfotiamine?

I like this kind... 100 mg here, but a 250 mg form is also available...

https://www.lifeextension.com/vitamins-supplements/item00920/benfotiamine-with-thiamine?gclid=EAIaIQobChMI-f2a7IWn_wIVp4ZMCh0_swbHEAQYAiABEgIYm_D_BwE

 

2) I only take a low dose B complex - eg 5-10mg of the other B vits, 24mcg B12, 300mcg biotin, 400mcg folate.  DO you think I should take more like a 50 B complex ie. higher doses of the other B vits?.  We spoke about before, that the other B vits are not needed in the same high quantities as the B1- but I feel that the 5-10mg are too small to support the B1.  What are your thoughts on this?  'm looking at "THORNE, Basic B complex" https://uk.iherb.com/pr/thorne-basic-b-complex-60-capsules/18791

It's common to have insufficiency in all the B vitamins, not just one.  Thiamine is the one that runs out the fastest because it is stored for the shortest period of time.  Supplementing with higher doses of all the B vitamins allows the cells to replenish their stores so everything is primed and ready to go.  Keep in mind that "recommended daily allowance" is based on "minimum daily requirement (to prevent disease)" originally set in the '30's and '40's.  Our diets and lifestyles have changed dramatically since then.  Scientists are finding higher doses of many of the B vitamins are beneficial.  

I prefer this one....

https://www.lifeextension.com/vitamins-supplements/item01945/bioactive-complete-b-complex?gclid=EAIaIQobChMI0-3yqoWn_wIVpDbUAR3EDgMzEAAYASAAEgLGp_D_BwE

 

3) I'm concerned my sleep quality has decreased.  Maybe due to lower carb.  Maybe due to the oxalate dumping.  Maybe due to electrolyte imbalances.  I'm taking about 400mg Mg citrate/malate/day.  And drinking coconut water, aiming to eat few servings of fruit to try to support the potassium. And salting food with sea salt. Dairy for my calcium needs.  Do you have any other suggestions to help the sleep while I make the changes.  Does my electrolyte regime look OK? How did/do you support your potassium/other electrolytes on the AIP diet?

Coconut water has diuretic and laxative properties that I don't care to have.  Commercial Coconut water frequently contains Sulfites.  I have Type Four Hypersensitivity to Sulfites, so I avoid foods high in Sulfites like shellfish and fermented foods.  I limit cruciferous veggies and potato chips. 

Sulfites stimulate mast cells to release histamine.  High histamine levels in the brain make us very alert and wide awake.  High histamine levels can cause hives and skin rashes in patches that move around. 

For sleep, I take Tryptophan, an amino acid found in dairy and turkey.  BUT Tryptophan can cause oxalate formation.  I'm curious if your oxalate dumping started after you added dairy back into your diet.  

Also for restful sleep, Passion Flower extract, and another amino acid, Theanine, are helpful.  Theanine is found in dark chocolate and Oolong tea.  (Wonderful excuse to eat more chocolate and enjoy a warm cuppa before bed.)

I like this water for electrolytes....

https://waiakea.com

 

4) Does the Marrs and Lonsdale book give detailed info on supplementation regimes/how long to continue them/how much etc?  I think I may invest in it.

It's not a how-to book.  There are lots of science-y discussions on how thiamine works and case studies, but there are chapters about high calorie malnutrition that you would find interesting.  Have you looked for it on Google Books?

5) I have read alot about the paradoxical reaction and I do think this is happening to me, even on only a very small amount of B1??

There's so much going on in our bodies all at once, it can be difficult to figure out what's doing which where. 

I think that you are not taking enough Thiamine Hydrochloride.  Thiamine HCl enters cells through special thiamine-only transporters.  These transporters shut down when there's a deficiency in thiamine.  There has to be a passive diffusion gradient for thiamine to enter the cells.  That happens at about 500 mg Thiamine HCl.  Lower doses are not as effective and improvements are not seen as consistently.

The fat soluble forms of Thiamine, (Allithiamine, Benfotiamine, TTFD, etc.) can enter cells by merging their lipid tail with the lipids in the cell membrane, so lower doses are required.  

You've got too many variables to keep track of easily with the dietary changes.  Do you keep a food journal?

The AIP diet eliminates lots of inflammatory foods that cause problems.  Once the body has calmed down, it's easier to see how the body reacts to foods and exercise.  

The AIP diet eliminates those nuts and seeds that are high in oxalates, and dairy which is very inflammatory.  I chose low histamine foods and low sulfite foods.  I included healthy fats, Omega Threes, flaxseed oil, olive oil and avocado oil.  Our bodies run on both carbohydrates and fats.  The AIP diet is temporary.  Eliminating grains and rice for three or four weeks will give the body a respite.  

Muscles and fuel...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3005844/

I am so pleased that you are sharing your journey with us! 

You've really done your homework!  

 

HI Knitty Kitty,

Thank you so much for reading and answering all my questions- greatly appreciated.  I hope everything is OK and no need to apologise!  Since I wrote, I have increased the dosage of my B complex (Thorne B basic) and I'm now up to nearly 300mg thiamine hydrochloride- still not enough to overcome the shut-down of the thiamine transporters but I 'm building gradually and have bought the Benfotiamine to add in soon (I bought Elliot Overton's Guide to thiamine deficiency and have roughly been following this.)

I still have very grainy stools (my interpretation of dumping, and a few skin breakouts that I never used to get).  I have been convinced this is "dumping" which SEEMED to coincide with starting B1 therapy and reducing my high oxalate food consumption.  I'm not sure if there was any correlation with eating dairy again.  I had read that dairy (calcium) can helps to increase oxalate crystal elimination in the gut/hindering absorption and is also a source of potassium.  I do feel like I sometime "crave" it and I don't think it is because of any opioid effect because it comes and goes(??).

I stopped eating all grains except rice but I do notice what seems a DEFINITE trend; I reduce my carb intake, my sleep reduces. This may be due to electrolytes, but I am adding back in some corn to complement the rice/fruit/honey/occasional sugar intake.  You're spot on- my diet has been too inconsistent to really spot any trends there - so I'm sticking to low'ish oxalates for now.

It is interesting that you say one must eat simple carbs while taking B1 to reduce the refeeding effect.  If anything, I did the reverse and reduced my carbs as I was thinking along the lines of "high calorie malnutrition" depleting B1.  Is adding some simple carbs into the diet to slow down the rate of anabolism that occurs during Refeeding- akin to adding a few oxalates back into diet if the dumping becomes too severe on a low oxalate diet?

I am contemplating buying the Marrs and Lonsdale book - but I don't have a lot of tine to read it right now so maybe in a few months. I feel I have enough info to be going on with thanks to you and the website sources - Elliot Overton /Hormones Matter/Sally Norton.

I have been avoiding dark choc (I used to eat a lot) due to the higher oxalate content but I think I am getting a bit extreme.  And the Theanine sleep-inducing properties would be welcome.  Sleep has been pretty poor, light and short - compared to when I felt most ill and I actually slept long and deep.

I'll up my carbs a bit.  Continue to gradually increase the Thiamine HCL then add benfotiamine.  I'll ensure omega 3's are in my diet regularly.  And depending on how this goes, I'll look into molybdenum.  Oh and of course, I'll add some chocolate back in!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3005844/ - thanks for this really useful and comprehensive  reference to have.

Thanks a million again.  Hopefully be back with some positive feedback :)

 

Gilly M Explorer
On 6/4/2023 at 12:34 AM, Russ H said:

I think that it is very unlikely that you are passing visible calcium oxalate crystals in your stool. It is passed in urine. The vast majority of people do not have a problem handling oxalic acid. 'Oxalate dumping' does not exist.

Hi Russ,

I have very grainy stools which I never had before.  It just "fits" with what I have been reading about adding in B1 (reducing endogenous oxalates) and reducing oxalate intake in my diet.  I do not eat seeds or grainy breads which may also cause grainy stools.  I have read about "oxalate dumping" and my symptoms do seem to come in waves.  And I used to eat loads of dark choc, sweet potatoes SPINACH galore, swiss chard and loads of almonds/chia seeds- maybe I just overdid it for the state of my gut permeability at the time? In addition to B1 deficiency.

May I ask why you don't think it exists?  Perhaps it is the B1 which is helping me and oxalates are a red herring.  I am open to all opinions !! :)

 

Russ H Community Regular
11 hours ago, Gilly M said:

Hi Russ,

I have very grainy stools which I never had before.  It just "fits" with what I have been reading about adding in B1 (reducing endogenous oxalates) and reducing oxalate intake in my diet.  I do not eat seeds or grainy breads which may also cause grainy stools.  I have read about "oxalate dumping" and my symptoms do seem to come in waves.  And I used to eat loads of dark choc, sweet potatoes SPINACH galore, swiss chard and loads of almonds/chia seeds- maybe I just overdid it for the state of my gut permeability at the time? In addition to B1 deficiency.

May I ask why you don't think it exists?  Perhaps it is the B1 which is helping me and oxalates are a red herring.  I am open to all opinions !! :)

 

Typical consumption of oxalate is approximately 1/5 g per day. The body doesn't store it. It is a tiny amount and not enough to be visible in the stool. In some people it can cause kidney stones. The coeliac diet is restrict enough without unnecessarily going on a low oxalic acid diet.

knitty kitty Grand Master
(edited)

Double check this for me....

 

"Usually, oxalate combines with calcium in the gut and exits the body through stools."

https://www.mayoclinic.org/diseases-conditions/hyperoxaluria/symptoms-causes/syc-20352254

 

High oxalate diet increases oxalates in blood and urine....

Diet-induced oxalate nephropathy from excessive nut and seed consumption

"In humans, dietary free oxalate is absorbed in the stomach, distal small intestine and colon; oxalate bound to calcium, iron and magnesium is excreted in faeces.1. Serum oxalate is excreted in urine and excessive filtration can cause calcium oxalate stones or nephropathy. "

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7705561/

 

And here...

 

Primary and secondary hyperoxaluria: Understanding the enigma

"Dietary ingestion of oxalate is reduced by concurrent ingestion of calcium or magnesium which complex with oxalate and form insoluble salts[10,31]."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4419133/

 

So, if diet high in oxalates gets oxalates into bloodstream, then addition of a calcium source, such as dairy, can precipitate the oxalates carried in the blood stream into those insoluble salts which are then excreted in the feces.

 

Eat foods with low oxalate levels

"This recommendation is for patients with high urine oxalate. Eating calcium-rich foods (see table above) with meals can often control the oxalate level in your urine. Urinary oxalate is controlled because eating calcium lowers the oxalate level in your body."

https://www.upstate.edu/urology/healthcare/conditions/kidney-stone/prevention.php

And...

"Include the right amount of calcium in your diet. Some people may think they can keep stones from forming by avoiding calcium, but the opposite is true. Calcium is a nutrient that is found in dairy products, such as yogurt, milk and cheese. You need to eat calcium so that it can bind with oxalate in the stomach and intestines before it moves to the kidneys. Eating foods with calcium is a good way for oxalates to leave the body and not form stones. The best way to get calcium into your body is through the foods you eat."

https://www.kidney.org/atoz/content/calcium-oxalate-stone#how-can-i-lower-my-chances-forming-calcium-oxalate-stones

 

And dumping syndrome...

Dietary Recommendations for Bariatric Patients to Prevent Kidney Stone Formation

"However, the consumption of milk and other dairy products have been associated with “Dumping syndrome” in some patients. The latter is due to the rapid emptying of food into the small intestine triggering rapid fluid shifts into the intestinal lumen and release of gastrointestinal hormones, causing gastrointestinal and vasomotor symptoms such as bloating, nausea, diarrhea, dizziness and sweating, among others."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7284744/?report=reader

 

Edited by knitty kitty
Add link
Gilly M Explorer
On 6/6/2023 at 8:58 AM, knitty kitty said:

Double check this for me....

 

"Usually, oxalate combines with calcium in the gut and exits the body through stools."

https://www.mayoclinic.org/diseases-conditions/hyperoxaluria/symptoms-causes/syc-20352254

 

High oxalate diet increases oxalates in blood and urine....

Diet-induced oxalate nephropathy from excessive nut and seed consumption

"In humans, dietary free oxalate is absorbed in the stomach, distal small intestine and colon; oxalate bound to calcium, iron and magnesium is excreted in faeces.1. Serum oxalate is excreted in urine and excessive filtration can cause calcium oxalate stones or nephropathy. "

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7705561/

 

And here...

 

Primary and secondary hyperoxaluria: Understanding the enigma

"Dietary ingestion of oxalate is reduced by concurrent ingestion of calcium or magnesium which complex with oxalate and form insoluble salts[10,31]."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4419133/

 

So, if diet high in oxalates gets oxalates into bloodstream, then addition of a calcium source, such as dairy, can precipitate the oxalates carried in the blood stream into those insoluble salts which are then excreted in the feces.

 

Eat foods with low oxalate levels

"This recommendation is for patients with high urine oxalate. Eating calcium-rich foods (see table above) with meals can often control the oxalate level in your urine. Urinary oxalate is controlled because eating calcium lowers the oxalate level in your body."

https://www.upstate.edu/urology/healthcare/conditions/kidney-stone/prevention.php

And...

"Include the right amount of calcium in your diet. Some people may think they can keep stones from forming by avoiding calcium, but the opposite is true. Calcium is a nutrient that is found in dairy products, such as yogurt, milk and cheese. You need to eat calcium so that it can bind with oxalate in the stomach and intestines before it moves to the kidneys. Eating foods with calcium is a good way for oxalates to leave the body and not form stones. The best way to get calcium into your body is through the foods you eat."

https://www.kidney.org/atoz/content/calcium-oxalate-stone#how-can-i-lower-my-chances-forming-calcium-oxalate-stones

 

And dumping syndrome...

Dietary Recommendations for Bariatric Patients to Prevent Kidney Stone Formation

"However, the consumption of milk and other dairy products have been associated with “Dumping syndrome” in some patients. The latter is due to the rapid emptying of food into the small intestine triggering rapid fluid shifts into the intestinal lumen and release of gastrointestinal hormones, causing gastrointestinal and vasomotor symptoms such as bloating, nausea, diarrhea, dizziness and sweating, among others."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7284744/?report=reader

 

These are EXCELLENT resources to have Knitty Kitty.  Thank you for digging them out for me! I've read through most of them, some in detail,some in less, but I'll peruse them later too(I'm having a particularly foggy and fatigued period right now so little and often is best when reading!)

I definitely think that is what has been happening-  You wrote "So, if diet high in oxalates gets oxalates into bloodstream, then addition of a calcium source, such as dairy, can precipitate the oxalates carried in the blood stream into those insoluble salts which are then excreted in the feces".  Yes!! I was wondering that - I thought, well surely I would have noticed before, that the dairy/calcium in my gut was binding the oxalates in the gut and excreting them in my stool.  But of course, the oxalates bind to other minerals in the bloodstream  and then excreting them - skin/urine/faeces. I am likely now mobilising more oxalates in bloodstream(B1 and lower ox diet)

But from what many of the articles say- a diet lower in protein and salt ( or at least, not HIGH salt/protein) will lower risk of calcium excretion in urine and lower calcium oxalate stone formation.  So calcium oxalates in urine is unwanted, but calcium oxalates in faeces is wanted for elimination (my understanding). I've read other sources that advocate a higher animal protein and salt diet- animal foods being lower in oxalates and high in vits/mins, and sodium being necessary for potassium delivery to cells and adrenal function.  I will err on side of caution and just be moderate in both,

I think the same might be happening to my iron - it is being sequestered by oxalates.  I have had high TSAT% for most of my blood test results, despite not that high an iron supplement dose.  I do have the allele for haemochromatosis, but sometimes my ferritin value has dropped while TSAT% has risen.  I have read oxalates can bind to the iron in transferrin(carrier protein) and prevent it's release into tissues as stored ferritin.  So I am continuing a low dose iron supplement too.

Sleep has been the one thing to really deteriorate for me and I'm now wondering if it is linked more to calcium than anything else.  If calcium is being used up to bind the oxalates (as seen by my "dumping")- perhaps I don't have enough for it's sleep inducing properties, especially as I stopped my vitamin D supplements due to a) it being Summer now albeit not consistent sunshine where I live in UK AND b) I wanted more calcium to bind the oxalates - but perhaps I still need to take some. Also I take magnesium but maybe potassium is lagging.  

I had increasing air hunger past 2 days- something that I haven't had for YEARS (since this whole health deterioration kicked off)- I wonder if it is related to oxalates now mobilizing and I need to up things like iron/potassium (judiciously)

I sometimes feel this is just too complicated and I'm taking so many supplements.  But from what I have read,B1 deficiencies and oxalate issues can really wreak havoc and the body will need to be supported whilst oxalates are eliminated and mitochondrial function/metabolism heals.  Although I only take a low dose B1, I feel that I am quite sensitive to it- hard to know how much oxalate is endogenous production and how much is dietary.

I'm such a novice/lay-person to all this and although I feel I've learnt lots, I've really only scratched the surface.  Hopefully it is enough for me to get on with for now.  I really want to get the sleep back into a more restorative mode though- I'll bear in mind your tips from before(histamine related foods, sulfites, tryptophan......).

Thanks again for all these articles I would never have found so quickly!


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knitty kitty Grand Master

@Gilly M,

If you are able, add benfotiamine in as soon as you can. 

Your body is trying to deal with the oxalates - glyoxal - but is running out of thiamine dependent enzymes towards the end of the process, resulting in increasing problems with oxalates. 

Since you say you can't tolerate the thiamine hydrochloride form in the higher dose needed, you're still thiamine insufficient.  This is resulting in the incomplete processing of oxalates and its own problems.  These incompletely processed oxalates are more likely the cause of your sleep problems.

Adding Benfotiamine will give your system the extra thiamine that it needs to deal with those oxalates.  Benfotiamine bypasses the thiamine transporters, so more thiamine will be available within cells and finish processing those oxalates.

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

Thiamine enzymes are needed to regulate the sodium-potassium balance.  Thiamine enzymes are needed for adrenal function.  Thiamine helps iron metabolism.  

Air hunger is a symptom of Thiamine deficiency.  

I am worried that your carb loading has depleted your thiamine and has pushed you towards diabetes.  Ninety percent of diabetics and pre-diabetics are thiamine deficient.

Do not stop your Vitamin D unless you know your levels are above 80 nMol/L and will stay there.  Vitamin D and Thiamine together help control glucose metabolism.

https://pubmed.ncbi.nlm.nih.gov/26744303/

 

Vitamin D deficiency also affects sleep.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8912284/

Keep taking your Vitamin D!

If you can start Benfotiamine, then you can reduce the thiamine hydrochloride.  Our bodies like both kinds of thiamine, so many Benfotiamine supplements include thiamine hydrochloride.  (Read the labels --  I've seen benfotiamine supplements that contained more thiamine hydrochloride than benfotiamine --don't use that type.)  Life Extension is a good brand.

Focus on correcting your thiamine insufficiency and many of the downhill consequences will be corrected. 

Blue-Sky Enthusiast
On 12/5/2022 at 7:05 AM, Gilly M said:

I've also been thinking back to when I do try LCHF diet- my headaches and fatigue improved on this in the past.... but I always got hungry, nervous about thyroid, nervous about my history of RED-s- and I caved in , ate the carbs, they tasted devine and I decided that LCHF just wasn't sustainable!!  But I keep coming back to the literature and case studies and it does make total sense- it just doesn't feel "right" when I try it.  Most B1 rich foods are animal products so a LCHF diet with moderate animal protein fits with correcting/preventing the B1 deficiency causes too.

You might want to get checked for diabetes if you haven't already as that is another thing that can cause carb cravings.

Right now I take extra thiamine as it might help maintain blood sugar levels, and insulin tolerance which I think is important:

https://pubmed.ncbi.nlm.nih.gov/23715873/

Thiamine boosts tight junction proteins, however it also might boost immune cell growth.  Energy used by cells is variable and cells can level off and develop tolerance. The amount of tight junction proteins in the body also varies a lot at different times within a day. You might have better success with regular thiamine (rather than benfotamine) and if you take it with meals.  Benfotamine has been tested a lot on diabetes related neuropathy, but it might not be the best for IBS or all types of chronic fatigue. In two papers I read about ibs/thiamine/fatigue they both used regular thiamine and it was helpful in reducing the fatigue. Regular thiamine is absorbed and eliminated faster than benfotiamine.

https://ampersandhealth.co.uk/myibdcare/resources/how-thiamine-may-be-key-in-reducing-ibd-fatigue/

Zinc, magnesium and selenium work best together to block the nmda receptor which is found all over the body. At the bottom of the following links there is the government page which talks about the safety of different vitamins.  I doubt taking high dosage thiamine or b12 is a health concern, as they are water-soluble and easy to get rid of. There could be some health risks to taking high dosage niacin. It used to be used to help with lowering cholesterol levels. Now I don't think it used as often do to some health risks.

You could try the low foodmap diet. Some high oxalate food are also high foodmap.

https://www.dovepress.com/let-food-be-thy-medicine-diet-and-supplements-in-irritable-bowel-syndr-peer-reviewed-fulltext-article-CEG

Gilly M Explorer
13 hours ago, Blue-Sky said:

You might want to get checked for diabetes if you haven't already as that is another thing that can cause carb cravings.

Right now I take extra thiamine as it might help maintain blood sugar levels, and insulin tolerance which I think is important:

https://pubmed.ncbi.nlm.nih.gov/23715873/

Thiamine boosts tight junction proteins, however it also might boost immune cell growth.  Energy used by cells is variable and cells can level off and develop tolerance. The amount of tight junction proteins in the body also varies a lot at different times within a day. You might have better success with regular thiamine (rather than benfotamine) and if you take it with meals.  Benfotamine has been tested a lot on diabetes related neuropathy, but it might not be the best for IBS or all types of chronic fatigue. In two papers I read about ibs/thiamine/fatigue they both used regular thiamine and it was helpful in reducing the fatigue. Regular thiamine is absorbed and eliminated faster than benfotiamine.

https://ampersandhealth.co.uk/myibdcare/resources/how-thiamine-may-be-key-in-reducing-ibd-fatigue/

Zinc, magnesium and selenium work best together to block the nmda receptor which is found all over the body. At the bottom of the following links there is the government page which talks about the safety of different vitamins.  I doubt taking high dosage thiamine or b12 is a health concern, as they are water-soluble and easy to get rid of. There could be some health risks to taking high dosage niacin. It used to be used to help with lowering cholesterol levels. Now I don't think it used as often do to some health risks.

You could try the low foodmap diet. Some high oxalate food are also high foodmap.

https://www.dovepress.com/let-food-be-thy-medicine-diet-and-supplements-in-irritable-bowel-syndr-peer-reviewed-fulltext-article-CEG

Hi- thank you for this information.  I have backed off my dose of B1 a little bit- I just take thiamine hydrochloride at the moment.  I think I am quite sensitive to it- taking only 200mg right now.  I wonder if I just need to plough on though and try to increase the dose.... I'm on quite a low dose compared to the subjects in the study about IBS fatigue who were given 600-1800mg! I'll try to build up slowly and see how I feel.

The niacin dose in my B complex is 140mg (10mg as niacin,130mg as nicotinamide)- this seems to be pretty standard across the B complexes I looked up. It is only 10mg niacin so hoping this isn't too high a dose.

I have had my HbA1c several times in the past few years and it seems fine. But yes, at times I questioned diabetes as I was often ravenous for carbs!

I haven't added zinc back into the mix (currently taking B's, vit D, magnesium, low dose iron, K2)- maybe I need to as oxalates seems to lower everything!  Molybdenum is also one suggested to me and one I have read about.

TBH, my gut is the one part of me that seems to be settled- less discomfort.  I rarely get bloating now.  Better consistency.  I have stopped all gluten and most high-moderate oxalate foods.  Maybe the B1 is helping this too.

Gilly M Explorer
20 hours ago, knitty kitty said:

@Gilly M,

If you are able, add benfotiamine in as soon as you can. 

Your body is trying to deal with the oxalates - glyoxal - but is running out of thiamine dependent enzymes towards the end of the process, resulting in increasing problems with oxalates. 

Since you say you can't tolerate the thiamine hydrochloride form in the higher dose needed, you're still thiamine insufficient.  This is resulting in the incomplete processing of oxalates and its own problems.  These incompletely processed oxalates are more likely the cause of your sleep problems.

Adding Benfotiamine will give your system the extra thiamine that it needs to deal with those oxalates.  Benfotiamine bypasses the thiamine transporters, so more thiamine will be available within cells and finish processing those oxalates.

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

 

Thiamine enzymes are needed to regulate the sodium-potassium balance.  Thiamine enzymes are needed for adrenal function.  Thiamine helps iron metabolism.  

Air hunger is a symptom of Thiamine deficiency.  

I am worried that your carb loading has depleted your thiamine and has pushed you towards diabetes.  Ninety percent of diabetics and pre-diabetics are thiamine deficient.

Do not stop your Vitamin D unless you know your levels are above 80 nMol/L and will stay there.  Vitamin D and Thiamine together help control glucose metabolism.

https://pubmed.ncbi.nlm.nih.gov/26744303/

 

Vitamin D deficiency also affects sleep.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8912284/

Keep taking your Vitamin D!

If you can start Benfotiamine, then you can reduce the thiamine hydrochloride.  Our bodies like both kinds of thiamine, so many Benfotiamine supplements include thiamine hydrochloride.  (Read the labels --  I've seen benfotiamine supplements that contained more thiamine hydrochloride than benfotiamine --don't use that type.)  Life Extension is a good brand.

Focus on correcting your thiamine insufficiency and many of the downhill consequences will be corrected. 

HI Knitty Kitty,

I am not sure now about my intolerance to thiamine HCl. As well as I can recall it, I started thiamine HCl, reduced my oxalate food consumption, and I started "dumping".  And sleep reduced. It may be the a PRODUCT of taking thiamine that is the issue (eg. oxalate dumping) that I am not tolerating, not the thaimine.

May I write my thoughts out to you(APOLOGIES for the rambling, perhaps incoherent, and often repetitive narrative - as I try to make sense of it....AND OF COURSE skin read until you get to the parts in italics)

I don't think I was dumping before I a) started the B1, starting at 100mg b) lowered dietary oxalates.  Both of these [ a) and b) ] would lower my blood oxalate level to then allow my tissues to start releasing oxalate stored in them into the bloodstream - the B1 mechanism due to decreasing oxalate endogenous production now more B1 was in my system, and the lowered oxalates in diet mechanism reducing the exogenous contribution.  

Even though I have likely been deficient for years in B1, I don't ever recall oxalate dumping.  Perhaps it was the recent lowering of the dietary oxalate that then UNMASKED this incomplete oxalate processing (2y to low thiamine status) And/Or perhaps adding in even just 100mg of B1 was enough to also start reducing the endogenous oxalate production from glyoxal, thus lowering blood oxalate level to allow tissues to start releasing oxalates..  Although, the latter is dubious as I only took 100mg to start with???

This is likely all academic as the situation is, my body now has too much oxalate in the bloodstream as I dump.  I have undoubtedly been B1 deficient for a long time so regardless of WHY my circulating oxalates have increased, I need to take on more B1!!!  I have also eaten a high oxalate diet  for years, so I think it is probably a combination of the 2 over the years- 1)diet and 2) lack of thiamine to process glyoxal into non-toxic metabolites (ie.not oxalate!)

In particular the past 4 years, I have eaten MORE carbs in a kind of refeeding situation from RED-S(so lowering thiamine) and also increased oxalate consumption in an attempt to increase non-dairy calcium sources(= increased oxalate foods).

I think the whole dietary oxalate theory has side-tracked me too much and I'm hyper focussed on this.  When actually, reducing the high ox foods will help, BUT they likely masked the endogenous oxalate production produced due to inadequate thiamine/high carb diet.  In my opinion I can't imagine the 100mg of B1 had much of an effect on reducing the endogenous oxalates(???).

And of course, I've started to take magnesium citrate, potassium citrate, eat more dairy (calcium( and dirnk more lemon juice (citrates)- all of which may increase dumping thus bringing the whole oxalate situation to my attention.

SO - I think I will up the thiamine hydrochloride to 400mg over the next few days?  Then add in benfotiamine slowly increasing up to 400mg? Does that sound like an OK plan? Keep in magnesium, low dose iron, potassium, B complex.

I do wonder though, if  I have stores of oxalate crystals throughout my body, then this dumping will continue  despite eventually reaching adequate B1 supplementation values?  I guess this will depend on how much I have stored over time.

I may have to keep adding in some higher ox foods to slow down the rate. I was also trying to be judicious and back off on B1, but realise now this may be hindering not helping/ 

Do you think zinc and molybdenum as well?

If you have got this far Knitty Kitty- a huge thank you (and congratulations-I'm not sure I would have done!!)

Thanks so much again for all your help. I hope I can pass this info on to others too, once I feel better and can be clearer on the subject matter.

knitty kitty Grand Master

@Gilly M,

Try taking 500 mg of thiamine hydrochloride.  Take 300 mg and three hours later take 200 - 300 mgs more.  Take 500 mg thiamine hydrochloride for three to five days.  If you see improvements, continue taking it in this manner.  You can add Benfotiamine in addition to the thiamine hydrochloride.  

If you take the 500 mg thiamine consistently, your body will have enough thiamine to process the glyoxal into things other than oxalates.  

I think you are having a hard time because you are not consistent in your thiamine dosing.  High dose Thiamine needs to be 500 mg or above consistently.  Your body keeps having to start over.  It's as if you are stepping on the gas, then stepping on the brakes, then stepping on the gas, resulting in a very jerking journey.  

Pyridoxine Vitamin B6 can be increased to 100 mg/day.  Just take two of the B 50 Complex (one at each of two meals).  

Eliminate dairy from your diet.  Dairy is inflammatory.  Oxalates will bind with the magnesium you are taking.  

Eliminate Chia seeds, nuts, and other foods high in oxalates.  Chocolate can be used to lessen oxalate dumping.  (We have to have some fun.)

Do not consume large amounts of carbohydrates.  Instead eat meals with protein and healthy fats (flaxseed oil, olive oil) more frequently if you are hungry.  A stew in a crock pot is convenient for this.  I used to eat every two  hours when I first started high dose thiamine and the AIP diet.

Magnesium, zinc, molybdenum, selenium, and potassium citrate are good minerals to take.

Keep a food/mood/poo'd journal.  

Limit time looking at computer/phone/tv screens.  The blue light emitted from them can make falling asleep difficult.

You are hyper-focusing and over-thinking this.  (OCD is also a symptom of Thiamine deficiency.)  Thinking and worrying causes the brain to use up as much thiamine as your muscles use in running a marathon.

Your body needs time to adjust to operating properly while you are replenishing your thiamine stores.  

Be kind to yourself.  Find a hobby.  (I would gladly teach you to knit or embroider if you were here.😸)  Be creative.  Read that book you've been meaning to read.  Do something you enjoy.  

You will make it through.  It just takes time.  You will start to see improvements.  

I'll be around for you. 

Best wishes!  

Gilly M Explorer
17 hours ago, knitty kitty said:

@Gilly M,

Try taking 500 mg of thiamine hydrochloride.  Take 300 mg and three hours later take 200 - 300 mgs more.  Take 500 mg thiamine hydrochloride for three to five days.  If you see improvements, continue taking it in this manner.  You can add Benfotiamine in addition to the thiamine hydrochloride.  

If you take the 500 mg thiamine consistently, your body will have enough thiamine to process the glyoxal into things other than oxalates.  

I think you are having a hard time because you are not consistent in your thiamine dosing.  High dose Thiamine needs to be 500 mg or above consistently.  Your body keeps having to start over.  It's as if you are stepping on the gas, then stepping on the brakes, then stepping on the gas, resulting in a very jerking journey.  

Pyridoxine Vitamin B6 can be increased to 100 mg/day.  Just take two of the B 50 Complex (one at each of two meals).  

Eliminate dairy from your diet.  Dairy is inflammatory.  Oxalates will bind with the magnesium you are taking.  

Eliminate Chia seeds, nuts, and other foods high in oxalates.  Chocolate can be used to lessen oxalate dumping.  (We have to have some fun.)

Do not consume large amounts of carbohydrates.  Instead eat meals with protein and healthy fats (flaxseed oil, olive oil) more frequently if you are hungry.  A stew in a crock pot is convenient for this.  I used to eat every two  hours when I first started high dose thiamine and the AIP diet.

Magnesium, zinc, molybdenum, selenium, and potassium citrate are good minerals to take.

Keep a food/mood/poo'd journal.  

Limit time looking at computer/phone/tv screens.  The blue light emitted from them can make falling asleep difficult.

You are hyper-focusing and over-thinking this.  (OCD is also a symptom of Thiamine deficiency.)  Thinking and worrying causes the brain to use up as much thiamine as your muscles use in running a marathon.

Your body needs time to adjust to operating properly while you are replenishing your thiamine stores.  

Be kind to yourself.  Find a hobby.  (I would gladly teach you to knit or embroider if you were here.😸)  Be creative.  Read that book you've been meaning to read.  Do something you enjoy.  

You will make it through.  It just takes time.  You will start to see improvements.  

I'll be around for you. 

Best wishes!  

 

This is so helpful Knitty Kitty.  Very coherent and logical,  thoughtful and kind.  Thank you.  This is a real eye-opening fact:-  Thinking and worrying causes the brain to use up as much thiamine as your muscles use in running a marathon.!!! I must have zero stores!! Yes,I overthink EVERYTHING!!

My supplement B complex only has 10mg B6 so I'll have to look into something that gives me more (the Life Extension one you linked above looks good)  I'll increase the B1 thiamine HCL in the meantime. Plus look into molybdenum. I already have zinc in my vast supplement cupboard!

Your body keeps having to start over.  It's as if you are stepping on the gas, then stepping on the brakes, then stepping on the gas, resulting in a very jerking journey.  This makes total sense.  I was focussing more on high oxalate diet being the issue; but if I'm low in B1 and not taking enough, I'm still continuing to produce too many oxalates, and on a low dose supplement (the 200mg I've been taking) it may be enough to stop the oxalate production a little but not enough.  Perhaps reducing the oxalates in my diet provided the gradient needed from tissues to bloodstream for oxalates to now dump.  (starting to overthink again!!) I can add some higher oxalate foods if I feel dumping gets too much(chocolate!!)

Dairy exclusion is the one thing I am unable to reach peace with- I  feel nourished and satisfied when I eat it(??). I will see how I go with the above changes first and maybe experiment. It may be causing me to dump too much too?? 

I am so grateful for all your help, support and knowledge Knitty Kitty and will keep you posted for sure. Distractions and diversions (I guess I put life on hold until I have "the answer"/know things 100% etc) :)

I hope you are doing well.  Kind wishes to you.

knitty kitty Grand Master

@Gilly M,

How much magnesium are you taking daily?  What kind of magnesium are you taking?  What formulation?  

You said in an earlier post you have osteopenia, and in the post above, you're still dumping oxalates.  

Although you've mentioned taking a magnesium supplement, I'm thinking you may want to try increasing your magnesium. 

Magnesium is used with Thiamine to make enzymes our bodies need.  If you are deficient in magnesium, thiamine cannot be utilized as well.  Magnesium and thiamine both are needed to make some of those feel good brain chemicals, too. 

I take Magnesium Glycinate which is really gentle on the body and easily absorbed.  (Magnesium oxide is not as easily absorbed, but is useful for constipation since it pulls water into the intestinal tract.)

Ideally, we should get twice as much calcium as magnesium from our diets.   

Magnesium is important in maintaining and improving bone density.  Most of the calcium in your bones is laid down until about age twenty.  After that, it's magnesium that keeps calcium there.

Magnesium can help slow oxalate dumping.  Magnesium will bind with and remove oxalates, similarly as calcium does.

 

Reading Assignments:

Thiamine and magnesium deficiencies: keys to disease

(by Dr. Lonsdale)

https://pubmed.ncbi.nlm.nih.gov/25542071/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

by Drs. Chandler Marrs and Derrick Lonsdale

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

And...

Aggravation of thiamine deficiency by magnesium depletion. A case report

https://pubmed.ncbi.nlm.nih.gov/4050546/

And...

Magnesium deficiency: possible role in osteoporosis associated with gluten-sensitive enteropathy

https://pubmed.ncbi.nlm.nih.gov/9116391/

And...

An update on magnesium and bone health

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313472/

And...

Importance of magnesium in absorption and excretion of oxalate

https://pubmed.ncbi.nlm.nih.gov/15812215/

And...

You said "Dairy exclusion is the one thing I am unable to reach peace with- I  feel nourished and satisfied when I eat it(??)."

That's the exogenous opioids talking there.  Think about eliminating dairy for the weekend...just to see what happens.

"Distractions and diversions (I guess I put life on hold until I have "the answer"/know things 100% etc)"

Yes, I know that feeling very well from my own journey.  I'm very blessed to have found some answers, and that I can share them with others here so they can have a smoother journey.  Knowledge is one thing you can give away and keep at the same time. 😺 

Gilly M Explorer
13 hours ago, knitty kitty said:

@Gilly M,

How much magnesium are you taking daily?  What kind of magnesium are you taking?  What formulation?  

You said in an earlier post you have osteopenia, and in the post above, you're still dumping oxalates.  

Although you've mentioned taking a magnesium supplement, I'm thinking you may want to try increasing your magnesium. 

Magnesium is used with Thiamine to make enzymes our bodies need.  If you are deficient in magnesium, thiamine cannot be utilized as well.  Magnesium and thiamine both are needed to make some of those feel good brain chemicals, too. 

I take Magnesium Glycinate which is really gentle on the body and easily absorbed.  (Magnesium oxide is not as easily absorbed, but is useful for constipation since it pulls water into the intestinal tract.)

Ideally, we should get twice as much calcium as magnesium from our diets.   

Magnesium is important in maintaining and improving bone density.  Most of the calcium in your bones is laid down until about age twenty.  After that, it's magnesium that keeps calcium there.

Magnesium can help slow oxalate dumping.  Magnesium will bind with and remove oxalates, similarly as calcium does.

 

Reading Assignments:

Thiamine and magnesium deficiencies: keys to disease

(by Dr. Lonsdale)

https://pubmed.ncbi.nlm.nih.gov/25542071/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

by Drs. Chandler Marrs and Derrick Lonsdale

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

And...

Aggravation of thiamine deficiency by magnesium depletion. A case report

https://pubmed.ncbi.nlm.nih.gov/4050546/

And...

Magnesium deficiency: possible role in osteoporosis associated with gluten-sensitive enteropathy

https://pubmed.ncbi.nlm.nih.gov/9116391/

And...

An update on magnesium and bone health

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313472/

And...

Importance of magnesium in absorption and excretion of oxalate

https://pubmed.ncbi.nlm.nih.gov/15812215/

And...

You said "Dairy exclusion is the one thing I am unable to reach peace with- I  feel nourished and satisfied when I eat it(??)."

That's the exogenous opioids talking there.  Think about eliminating dairy for the weekend...just to see what happens.

"Distractions and diversions (I guess I put life on hold until I have "the answer"/know things 100% etc)"

Yes, I know that feeling very well from my own journey.  I'm very blessed to have found some answers, and that I can share them with others here so they can have a smoother journey.  Knowledge is one thing you can give away and keep at the same time. 😺 

Hi, I was just about to tuck into my yogurt and fruit breakfast- and I read your message- so I out the spoon down!  I'll try no dairy this weekend. (Butter too??)

In the past I have tried dairy free and I feel my sleep really deteriorated. I was also concerned about where I would get my calcium sources from which resulted in me eating the high oxalate foods(which data shows they have high calcium content but this is thought to have low bio-availability due to binding to plant oxalates!)

Perhaps the poorer sleep was linked to other things and stopping dairy was just a red herring.  Or an "opioid withdrawal" type effect.  Or indeed a lack of calcium intake?? I will try it again this weekend now I am focusing on other things like B1, magnesium,low oxalate, which will all help.

But " Ideally, we should get twice as much calcium as magnesium from our diets."  -where can the 1000-1200mg RDA calcium then come from? Do we really need as much?  Is it the magnesium that is more important? I will read through the articles you liked to me over the weekend which I am sure will answer some of these questions?  Thank you.

I have actually slept a bit better past 2 nights. I also appear to be dumping a little less!  Changes I made - I added in some chocolate-higher oxalates.  And I have increased dose from 300-400mg yesterday.  Up to 500mg (hydrochloride) today.  I also added my vitamin D back in.  All 3 could have had a positive effect.  I do feel my body and brain is undergoing "changes"- fatigue and mental tiredness waxes and wanes; my brain can feel a bit "zapped" and  waking up in the morning I feel quite unwell- but I feel these are positive things as healing takes place.

One thing about the B6- I have scared myself from things I have read about B6- about the risk of neurotoxicity.  I have also read that once increasing B1 stores, B6 is then activated.Do you think I should still increase from the 10mg B6 up to 100mg - at least short term.  I have not read enough about B6 - more about B1.  Of course, you cannot tell my blood status-- but just from what you have researched and read about?

Hope you're having a lovely weekend.  I'll start a diary to keep up with changes and report back! 

 

Gilly M Explorer
1 minute ago, Gilly M said:
14 hours ago, knitty kitty said:

@Gilly M,

How much magnesium are you taking daily?  What kind of magnesium are you taking?  What formulation?  

You said in an earlier post you have osteopenia, and in the post above, you're still dumping oxalates.  

Although you've mentioned taking a magnesium supplement, I'm thinking you may want to try increasing your magnesium. 

Magnesium is used with Thiamine to make enzymes our bodies need.  If you are deficient in magnesium, thiamine cannot be utilized as well.  Magnesium and thiamine both are needed to make some of those feel good brain chemicals, too. 

I take Magnesium Glycinate which is really gentle on the body and easily absorbed.  (Magnesium oxide is not as easily absorbed, but is useful for constipation since it pulls water into the intestinal tract.)

Ideally, we should get twice as much calcium as magnesium from our diets.   

Magnesium is important in maintaining and improving bone density.  Most of the calcium in your bones is laid down until about age twenty.  After that, it's magnesium that keeps calcium there.

Magnesium can help slow oxalate dumping.  Magnesium will bind with and remove oxalates, similarly as calcium does.

 

Reading Assignments:

Thiamine and magnesium deficiencies: keys to disease

(by Dr. Lonsdale)

https://pubmed.ncbi.nlm.nih.gov/25542071/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

by Drs. Chandler Marrs and Derrick Lonsdale

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

And...

Aggravation of thiamine deficiency by magnesium depletion. A case report

https://pubmed.ncbi.nlm.nih.gov/4050546/

And...

Magnesium deficiency: possible role in osteoporosis associated with gluten-sensitive enteropathy

https://pubmed.ncbi.nlm.nih.gov/9116391/

And...

An update on magnesium and bone health

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8313472/

And...

Importance of magnesium in absorption and excretion of oxalate

https://pubmed.ncbi.nlm.nih.gov/15812215/

And...

You said "Dairy exclusion is the one thing I am unable to reach peace with- I  feel nourished and satisfied when I eat it(??)."

That's the exogenous opioids talking there.  Think about eliminating dairy for the weekend...just to see what happens.

"Distractions and diversions (I guess I put life on hold until I have "the answer"/know things 100% etc)"

Yes, I know that feeling very well from my own journey.  I'm very blessed to have found some answers, and that I can share them with others here so they can have a smoother journey.  Knowledge is one thing you can give away and keep at the same time. 😺 

Forgot to say- I'm taking 420mg magnesium daily- split throughout day- magnesium citramalate first half of day, magnesium citrate PM.  I likely have scope to increase this.... to bowel tolerance.

 

knitty kitty Grand Master

@Gilly MGood morning!  

Proud of you for trying a dairy free weekend.  Yes, butter is out, too.

I get lots of information to post from the National Institute of Health.  It's free, so everyone can read and research for themselves.  

 

https://ods.od.nih.gov/factsheets/VitaminB6-HealthProfessional/

and... 

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

 

  • 3 weeks later...
Gilly M Explorer
On 6/10/2023 at 4:11 PM, knitty kitty said:

@Gilly MGood morning!  

Proud of you for trying a dairy free weekend.  Yes, butter is out, too.

I get lots of information to post from the National Institute of Health.  It's free, so everyone can read and research for themselves.  

 

https://ods.od.nih.gov/factsheets/VitaminB6-HealthProfessional/

and... 

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

 

Hi Knittiy Kitty,

Just a quick update on how things are going- I have noticed a definite shift in the positive direction :)

Things that have improved - less malaise, no nausea, virtually NO headaches!!!!, more motivation for life, less fatigue, less ravenous appetite/more stable appetite, lips now mostly pink and moist instead of pale and chapped, overall less abdominal discomfort and bloating,less blurry vision, and now I think about it WAY less anxiety in the night!!

Things that wax and wane - the blurry vision outside, still feel a bit hungover at times, exercise can still feel very sore and depleting, get fleeting abdominal discomfort (oxalates?)

Things that have got worse- my sleep!- I now feel quite tired and wired at night(comapred to the deep, long albeit unrefreshing sleep I used to get). I'm not panicking about this as I realise it could be due to things like a) paradoxical reaction b) electrolytes dipping c) body adjusting to lower carb.  

To try to help this lighter sleep, I have backed down on my B1 dose again - I was up to 500mg B1 HCL and 150mg benfotiamine.  Perhaps I increased too quickly?  I have dropped dose back down to 300-400mg B1 HCL for now.  It could just be I need to up my electrolytes accordingly.  I will stay at this slightly lower dose of B1 whilst upping electrolytes a bit.  If that goes well I will then try to increase B1 slightly.  If sleep dips again I will try upping electrolytes further before deciding it's due to the B1.  I take 400-500mg Mg, 1000mg additional K. I have to admit I am back onto dairy as I am still concerned my calcium levels are not adequate without it(??)  I also increased my carb intake a bit too to help sleep(not as high as before but not as low as the 100-150g I was eating).  AND I add in a a few more oxalate foods in case the dumping is causing this poor sleep too.

Oh yeah, and the air hunger went away when I upped my B1 and took more potassium. But it has come back again the past 2 days-I'm not sure if this is due to a need to increase B1 further !! or to back off a bit and rectify electrolytes(AHHGGHH!!) and manage oxalate dumping.

So although my energy levels have increased in many ways, I do feel lingering daily tiredness from poorer sleep.  Hopefully this can rectify with the minor adjustments I am making.

Hopefully next update I'll have made more steps forward and be a bit clearer as to  what is causing what :)

 

 

 

knitty kitty Grand Master

@Gilly M,

Wonderful to hear you're having improvements! 

The sleep thing can be improved if you get your Vitamin D level up to a minimum of 80 nMol/L.  You can take Vitamin D with each meal throughout the day.  Taking larger doses will help refill your depleted stores quickly and is not harmful.  Vitamin D helps reduce inflammation and calms down your immune system.  Vitamin D is necessary to keep the calcium (that is already in your bones) in your bones.  Additional calcium without sufficient Vitamin D can be contributing to the oxalate dumping.  Get off dairy.  Dairy is inflammatory.  Add leafy green vegetables instead.  Broccoli, kale, and mustard greens are as high in bioavailable calcium as dairy and are low in oxalates.  

https://pubmed.ncbi.nlm.nih.gov/35578558/

 

Another thing to help with sleep is to take your thiamine and benfotiamine earlier in the day.  I take the majority of my Thiamine earlier in the day, not past four p.m.  Take your B Complex and B12 earlier in the day as well.

Also for better sleep:  Take some of your magnesium and Vitamin D an hour or two before bed along with Tryptophan (a form of Niacin that is used to make those relaxing brain neurotransmitters like serotonin and dopamine).  Your sleep will improve.  

Think about supplementing with zinc picolinate.  Zinc works with Vitamin D to get calcium into the bones.  Zinc is also necessary for eye health.  (Zinc is an electrolyte, too.)  

Since your air hunger went away with higher thiamine and returned when lower thiamine was taken, you need to increase your thiamine back up!  A return of deficiency symptoms means your body needs more thiamine.  Add in more Benfotiamine instead of the thiamine hydrochloride.  Try a combination of Benfotiamine 300 mg with 100 - 300 mg Thiamine HCl every three or four hours. 

Hope these adjustments will keep you on your journey to health improvement!  Keep us posted!

Gilly M Explorer
On 6/30/2023 at 5:17 PM, knitty kitty said:

@Gilly M,

Wonderful to hear you're having improvements! 

The sleep thing can be improved if you get your Vitamin D level up to a minimum of 80 nMol/L.  You can take Vitamin D with each meal throughout the day.  Taking larger doses will help refill your depleted stores quickly and is not harmful.  Vitamin D helps reduce inflammation and calms down your immune system.  Vitamin D is necessary to keep the calcium (that is already in your bones) in your bones.  Additional calcium without sufficient Vitamin D can be contributing to the oxalate dumping.  Get off dairy.  Dairy is inflammatory.  Add leafy green vegetables instead.  Broccoli, kale, and mustard greens are as high in bioavailable calcium as dairy and are low in oxalates.  

https://pubmed.ncbi.nlm.nih.gov/35578558/

 

Another thing to help with sleep is to take your thiamine and benfotiamine earlier in the day.  I take the majority of my Thiamine earlier in the day, not past four p.m.  Take your B Complex and B12 earlier in the day as well.

Also for better sleep:  Take some of your magnesium and Vitamin D an hour or two before bed along with Tryptophan (a form of Niacin that is used to make those relaxing brain neurotransmitters like serotonin and dopamine).  Your sleep will improve.  

Think about supplementing with zinc picolinate.  Zinc works with Vitamin D to get calcium into the bones.  Zinc is also necessary for eye health.  (Zinc is an electrolyte, too.)  

Since your air hunger went away with higher thiamine and returned when lower thiamine was taken, you need to increase your thiamine back up!  A return of deficiency symptoms means your body needs more thiamine.  Add in more Benfotiamine instead of the thiamine hydrochloride.  Try a combination of Benfotiamine 300 mg with 100 - 300 mg Thiamine HCl every three or four hours. 

Hope these adjustments will keep you on your journey to health improvement!  Keep us posted!

Hi, I'm so sorry for the delay in my reply- especially after your prompt one!  Been a non-stop weekend.  Even writing that shows me how much I have improved as "non-stop" was not in my vocabulary a month or so ago!

Thank you for all those tips Knitty Kitty.  Vit D- last blood test result was in February this year and it showed 108nmol/l.  I think I was taking around 2500-3000IU.  I've dropped that dose a bit over Summer to 2000IU so hopefully blood value won't have changed much.  I'l try to get that remeasured soon.

Yes- I have noticed if I take any supplements in the evening time my sleep suffers, so I take all my B vits before 2pm.  I'm even wondering if Mg can have an energising effect on me right now- I know the malate form does.  But even the citrate form does(just a conjecture due to so many other variables)  I have read from one source that, in people who have been deficient, it can have an effect on sleep if taken at night-time. 

I take 7mg zinc citrate daily now - just started this about 2 weeks ago.

So I went back to 150mg benfotiamine over the weekend and 300mg thiamine HCl with no worsening of sleep- in fact, a bit deeper last night(?)  Air hunger back to being very infrequent.  So I'll plateau for now on this dose then increase, then repeat, gradually over time.

I still need you to convince me more with regards to stopping dairy ;)  I just feel I/people would have to eat a tonne of greens to get the 1000mg calcium/day.  I do eat sardines/tinned salmon but I don't want that everyday. And many of the other documented Ca rich foods are high oxalate!  I've been following, with success, your recommendations and am eternally grateful and thrilled.  But I have not taken that plunge to go dairy free! ....yet.....!

Thank you loads for your continued communication and support.  More updates TBC!! x

knitty kitty Grand Master
(edited)

@Gilly M, hi! 

Hope you're doing well.  Great to hear about your nonstop weekend!  Apologies for my delay.  There were some weather related connection problems.  

Your Vitamin D looks great.  

I take Thiamine at the beginning of meals and Magnesium at the end of meals.  That way, I get some of both throughout the day because they make energy together.  

Have you tried increasing your Benfotiamine to 300mg or more?  

I'm advocating for stopping dairy until you've healed.  You can add it back into your diet but only after you've healed.

Some Celiacs react to the casein in dairy the same as they react to gluten.   There's a segment of the protein gluten that resembles a segment of the protein casein.  The probability of your immune system mistakenly recognizing casein as gluten goes up as long as you have dairy in your diet.  

The immune cells that produce anti-gluten antibodies live for about two years.  {It takes about two years for the small intestine to heal because the anti-gluten antibodies quit attacking the villi in the small intestine (and other organs and tissues) which also have gluten-resembling proteins on the cell surfaces - hence, autoimmune response.}  If not triggered, those immune cells will die off and the immune system won't "remember" gluten.  That's when you can try adding dairy back in.  

More...

Mucosal reactivity to cow's milk protein in coeliac disease

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

And...

The Prevalence of Antibodies against Wheat and Milk Proteins in Blood Donors and Their Contribution to Neuroimmune Reactivities

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3916846/

"With these experiments we demonstrated that cerebellar and MOG peptides, which are known to be important autoantigens in gluten ataxia and MS, can cross-react with wheat and milk proteins."

Gluten Ataxia is not fun.  

Stop dairy now so you can heal faster now and resume consumption at a later date.  

Hope this helps.  

Edited by knitty kitty
Typo correction
Gilly M Explorer
4 hours ago, knitty kitty said:

@Gilly M, hi! 

Hope you're doing well.  Great to hear about your nonstop weekend!  Apologies for my delay.  There were some weather related connection problems.  

Your Vitamin D looks great.  

I take Thiamine at the beginning of meals and Magnesium at the end of meals.  That way, I get some of both throughout the day because they make energy together.  

Have you tried increasing your Benfotiamine to 300mg or more?  

I'm advocating for stopping dairy until you've healed.  You can add it back into your diet but only after you've healed.

Some Celiacs react to the casein in dairy the same as they react to gluten.   There's a segment of the protein gluten that resembles a segment of the protein casein.  The probability of your immune system mistakenly recognizing casein as gluten goes up as long as you have dairy in your diet.  

The immune cells that produce anti-gluten antibodies live for about two years.  {It takes about two years for the small intestine to heal because the anti-gluten antibodies quit attacking the villi in the small intestine (and other organs and tissues) which also have gluten-resembling proteins on the cell surfaces - hence, autoimmune response.}  If not triggered, those immune cells will die off and the immune system won't "remember" gluten.  That's when you can try adding dairy back in.  

More...

Mucosal reactivity to cow's milk protein in coeliac disease

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

And...

The Prevalence of Antibodies against Wheat and Milk Proteins in Blood Donors and Their Contribution to Neuroimmune Reactivities

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3916846/

"With these experiments we demonstrated that cerebellar and MOG peptides, which are known to be important autoantigens in gluten ataxia and MS, can cross-react with wheat and milk proteins."

Gluten Ataxia is not fun.  

Stop dairy now so you can heal faster now and resume consumption at a later date.  

Hope this helps.  

Hi.  Great to hear from you.  Just a quick message  from me for now and will read your message again later.  Your reply couldn't have come at a better time.  I just tried a run...I was very wheezy. I was thinking it was maybe dumping reactions. But niggling thoughts about dairy cropped up...I ate quite a lot yesterday.  In fact, the run felt pretty bad with breathing. So....

Would you say I/ people can get enough calcium from leafy greens?  Maybe fortified non dairy milks like coconut milk. Oranges! And some boney fish few times a week.  Bone broth is another option but I've read it can create oxalates.  I'm concerned about not getting enough Calcium.

I'm not a diagnosed celiac....but gave up gluten around time I added in B1 and lowered oxalates....in case it was contributing to increased gut permeability.  I have only been exposed 1x in past 6weeks...my silly slip up  :( I intend to stay gluten-free.  And now DF?!

What do you think about the calcium sources...does that mean a ton of leafy green veg a day(not spinach)?

  • 6 months later...
Gilly M Explorer
On 7/11/2023 at 4:57 AM, knitty kitty said:

@Gilly M, hi! 

Hope you're doing well.  Great to hear about your nonstop weekend!  Apologies for my delay.  There were some weather related connection problems.  

Your Vitamin D looks great.  

I take Thiamine at the beginning of meals and Magnesium at the end of meals.  That way, I get some of both throughout the day because they make energy together.  

Have you tried increasing your Benfotiamine to 300mg or more?  

I'm advocating for stopping dairy until you've healed.  You can add it back into your diet but only after you've healed.

Some Celiacs react to the casein in dairy the same as they react to gluten.   There's a segment of the protein gluten that resembles a segment of the protein casein.  The probability of your immune system mistakenly recognizing casein as gluten goes up as long as you have dairy in your diet.  

The immune cells that produce anti-gluten antibodies live for about two years.  {It takes about two years for the small intestine to heal because the anti-gluten antibodies quit attacking the villi in the small intestine (and other organs and tissues) which also have gluten-resembling proteins on the cell surfaces - hence, autoimmune response.}  If not triggered, those immune cells will die off and the immune system won't "remember" gluten.  That's when you can try adding dairy back in.  

More...

Mucosal reactivity to cow's milk protein in coeliac disease

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

And...

The Prevalence of Antibodies against Wheat and Milk Proteins in Blood Donors and Their Contribution to Neuroimmune Reactivities

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3916846/

"With these experiments we demonstrated that cerebellar and MOG peptides, which are known to be important autoantigens in gluten ataxia and MS, can cross-react with wheat and milk proteins."

Gluten Ataxia is not fun.  

Stop dairy now so you can heal faster now and resume consumption at a later date.  

Hope this helps.  

Hi Knitty Kitty,

I hope you're well. This is a bit of an emergency message:( Since last year, I gradually reduced all my B supplementation down until  just taking B complex over Xmas.

I was  also experiencing more stress, poorer sleep and drinking alcohol(I'm normally Tea total) and likely more carvs/refined foods. I was also skiing intensively for 8days and ploughed through fatigue. Then I experienced bad news start of Jan.  Since then my anxiety, low mood and panic and insomnia have gone through the roof.  My oxalate dumping via my stools is also at an all time high. My muscles twitch.  Nerves tingle, teeth clench(never had this before), head tension.

I thought it was due to stress and burnout.  Now, I'm thinking this is an exacerbation of my already "knife edge" B1 levels.

I currently take ....

2000IU VIT D,

500mg magnesium threonate/ citrate,

8mg zinc,

calcium via dairy,

potassium...sometimes 3 x 100mg in citrate form, or coconut water, food sources....but I don't get near 4700mg mark

B complex....stopped this as worried methyl firms causing anxiety

B1 HCl.....restarted today...50mg x2 daily

Diet....I am adding in a few higher oxalate foods to slow dumping. Prob still too carb heavy.

Im worried why I've dipped so dramatically.  Tired and wired.  Not sure where to go and I feel I'm supplementing blindly.  I just feel so wired and anxious. But exhausted.

Do you have any suggestions? I'm worried about increasing my B1 too quickly in case there is an electrolyte issue which B1 worsens.

Sorry for the bluntness of my message. .I'm hoping you can offer your insights.

Thanks Knitty Kitty

Gillian

knitty kitty Grand Master

Hi, @Gilly M,

I'm sorry to hear you're still having problems.  

Have you ever had a genetic test for Celiac Disease?  

I'm concerned that you are still having "oxalate dumping".  How does your "oxalate dumping" differ from sandy or grainy diarrhea?  Have you been diagnosed with kidney stones?  Gout?

Have you tried removing dairy from your diet?  You can have lactose intolerance or casein allergy without having Celiac Disease.  Are you keeping a food journal? 

Consuming alcohol and a high carbohydrate diet are good ways to deplete Thiamine.  

More thiamine is needed when we are physically active and also when under emotional stress.  Low mood, anxiety, panic, muscle tension, headaches, and insomnia are symptoms of Thiamine deficiency.  

I don't understand what you mean by your "knife edge" B1 levels.  

You've just restarted Thiamine HCl at 100 mg.  How much were you taking before you stopped?  Have you taken 500 mg or more in one day?  High dose Thiamine is considered 500 mg and above.  Health benefits are seen at levels 500mg and above.

Have you tried Benfotiamine, a form of Thiamine that gets into cells easily?  

Thiamine needs other B vitamins like Riboflavin B 2, and Pyridoxine B 6 and Folate B 9 to make important enzymes.  I do hope you will restart your B Complex.  B Complex vitamins usually lower anxiety.  

High histamine levels can cause anxiety and feeling wired.  Histamine acts as a neurotransmitter that causes alertness.  B Complex vitamins, especially the methylated forms help rid the body of excess histamine.  Our bodies can make histamine, it's a helpful neurotransmitter.  Histamine is also found in foods.  Our bodies can deal with a certain amount of histamine, but if we get excess histamine from our food, our bodies can have a difficult time getting rid of all of it.  Have you tried a low histamine Paleo diet?

knitty kitty

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

...B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/

...

Intestinal Dysbiosis in Patients with Histamine Intolerance

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9102523/

Gilly M Explorer
50 minutes ago, knitty kitty said:

Hi, @Gilly M,

I'm sorry to hear you're still having problems.  

Have you ever had a genetic test for Celiac Disease?  

I'm concerned that you are still having "oxalate dumping".  How does your "oxalate dumping" differ from sandy or grainy diarrhea?  Have you been diagnosed with kidney stones?  Gout?

Have you tried removing dairy from your diet?  You can have lactose intolerance or casein allergy without having Celiac Disease.  Are you keeping a food journal? 

Consuming alcohol and a high carbohydrate diet are good ways to deplete Thiamine.  

More thiamine is needed when we are physically active and also when under emotional stress.  Low mood, anxiety, panic, muscle tension, headaches, and insomnia are symptoms of Thiamine deficiency.  

I don't understand what you mean by your "knife edge" B1 levels.  

You've just restarted Thiamine HCl at 100 mg.  How much were you taking before you stopped?  Have you taken 500 mg or more in one day?  High dose Thiamine is considered 500 mg and above.  Health benefits are seen at levels 500mg and above.

Have you tried Benfotiamine, a form of Thiamine that gets into cells easily?  

Thiamine needs other B vitamins like Riboflavin B 2, and Pyridoxine B 6 and Folate B 9 to make important enzymes.  I do hope you will restart your B Complex.  B Complex vitamins usually lower anxiety.  

High histamine levels can cause anxiety and feeling wired.  Histamine acts as a neurotransmitter that causes alertness.  B Complex vitamins, especially the methylated forms help rid the body of excess histamine.  Our bodies can make histamine, it's a helpful neurotransmitter.  Histamine is also found in foods.  Our bodies can deal with a certain amount of histamine, but if we get excess histamine from our food, our bodies can have a difficult time getting rid of all of it.  Have you tried a low histamine Paleo diet?

knitty kitty

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

...B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/

...

Intestinal Dysbiosis in Patients with Histamine Intolerance

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9102523/

Hi Knitty Kitty, thank you so much for getting back to me so quickly. I'm so grateful to you......

Last year I was up to about 300mg benfotiamine and 300mg B1Hcl.  I reduced gradually until only on 100mg b1Hcl in my B complex.  I think I reduced because my sleep was getting light and I was dumping lots(although its a bit vague now...I'm not the best at keeping logs/diaries)

I've just restarted B1Hcl today....50mg only...I'm concerned I have electrolyte issues as I'm not only having insomnia but muscle twitching, some air hunger and excess urinating at night....I'm taking magnesium threonate and malate/citrate. If I'm just increase the thiamine to 500mg too quickly, could I not exacerbate any electrolyte deficiencies thus symptoms?

I stopped the B complex as I was worried the methyl forms were adding to the anxiety. To be honest, I'm just so confused now and second guessing everything.  I feel I'm just taking my supplements without any methodology now.  I "throw in" some iron too as I have heavy menstruations and I know iron deficiency can cause insomnia and anxiety.  

I have very grainy stools daily......no diarrhoea though. I have neck tension and my whole body feels wired and tremors.  I do eat a lot of dairy to ensure enough calcium, which oxalates will deplete.  

I haven't felt this low or anxious or sleep deprived since I had Lyme disease 5-6years ago.  The sleep deprivation is the main concern right now.

Do you think I should just up the dose tomorrow to 500mg(B1Hcl)...just go for it?  And continue the magnesium? I won't don't this evening as it would add to alertness/ insomnia(mind you, I'm hardly getting any sleep anyway)

Get calcium and potassium from foods. I'm so reluctant to stop dairy due to calcium.  I take vit D 2000iu.  I will get a blood panel done this week which will include vit D and iron.

Ill take a look at the low histamine Paleo diet.

I have never had genetic testing done for Celiac disease.  By knife edge B1 levels I mean, likely low but not low enough to cause the neuro signs.... I'm only going by deductive thinking based on history, symptoms, and improvement in many areas last year.

I'm really not too sure what to do now.  Any extra advice would be greatly appreciated.

Thank you x

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