Fuelling exercise -corn and other gluten free grains

[Gilly M]

Hi.  A brief as possible background on myself:  I'm not celiac - or if I am my blood tests were false negative and I don't get many gut symptoms.  I've been feeling pretty unwell for the past 4 years (mainly multitude of neuro/nerve symptoms, constant headaches being the biggie with blurry vision,  and chronic fatigue) but since supplementing with fairly high dose iron and b12, zinc, B complex , vit D /Mg/K2, things have really started to shift in a positive direction, especially this past week since I upped my iron dose - I feel lots better. I think I have been iron and B12 deficient despite bloods not truly reflecting this - a bit of detective work has had to go on with my blood work.  I used to be an competitive athlete but the past 4 years have been a huge struggle to even do  daily walks.  However this week I have been back on my bike and jogged a little.  I feel really hopeful and grateful I am on the right track:)   

I am still suspicious that I have food intolerances though - post nasal drip, cough and lingering fatigue. I know it is still early days but I would like to throw everything at this and in the previous years, dietary exclusions did help a bit albeit I think iron/B12/vit D were/are the big hitters for me.  My history as an athlete was I was underweight and didn't fuel well enough- Relative Energy  Deficiency in athletes.  I am now a much healthier weight, sleep much deeper with a much improved hormone status- so I want to be really careful I do't underfuel again if I cut out gluten and dairy.  If I cut out corn and all other gluten-free grains too I think I would really struggle with this.

So my question is, do many of find you do well on corn/quinoa and others if you just cut out gluten?  If you don't, what do you eat to fuel you with carbs- I don't think low carb would be good for me right now.  I am pretty sure I am 100% fine on rice.  And starchy veg and fruits.  Dairy and corn I am less sure.

Any athletes/sporty people- how do you fuel?  How do you find gluten-free grains?  How do you find dairy?

Many thanks for reading.  I am very interested to hear other's experiences 

[Scott Adams]

I eat corn and quinoa, and many celiacs do as well. From your post it's not clear if you've been gluten-free or not, or if you ever got an official diagnosis of celiac disease.

Note that you may also have non-celiac gluten sensitivity, for which there isn't a test, but ~10x more people have it than have celiac disease. Your many symptoms sound like classic celiac disease though.

[Gilly M]

Many thanks for your reply Scott.  I actually posted almost a year ago(crikey- time flies) and you kindly responded to me then too. I didn't go down the route of food exclusions as I was also investigating iron/B12/vitD deficiencies. Supplementing this year seems to have really helped and I do feel more consistently better. I ate gluten and dairy during this time - albeit to varying degrees.

I have been tested for celiac disease using Anti-Ttg-IgA - this came back negative(I was eating gluten).  I understand that this test can give false negatives though.  And at times this year when I did cut out gluten and dairy for a week or so I do think (?) I felt a better....whilst I worked on my D/iron/B12 levels.  

I do get stomach aches - mild RHS abdominal tenderness to touch- and pretty constant nasal drip when I'm outside. And I question why I may have had deficiencies (iron etc) - as an athlete years ago I suffered digestive distress on a routine basis- now it comes and goes.  Exercise also feels very laboured/heavy legs/ disproportionately laboured breathing.

The thing is I get really hungry whenever I try to cut out gluten and dairy. I seem to crave these foods and feel very unsatisfied when I don't include them in my diet. I don't have to eat loads of them, but they do seem to satisfy me and fuel me.   Rice alone doesn't satisfy me in the same way.  And I can only eat so many potatoes- not my "go to"!

I also have mild osteopaenia and although I know calcium is a small player in bone health(Mg, K2, vit D begin more important)- I do feel that dairy is a main source for me.  

So I'm just putting the post out there to see how others who have to give up gluten (and/or grains) fuel and how nourished/satisfied they feel, particularly to fuel exercise. 

Thanks again Scott.

[Scott Adams]

We're publishing older articles from our paper Journal of Gluten Sensitivity, and this one has a good summary of alternative grains:

 

[Gilly M]

Good to know.  Thank you!  This website is a very valuable and helpful resource.  Thank you for taking the time to read and reply to me.... very much appreciated.  I'll see how I feel on different grains and may have to improve my cooking skills!

[knitty kitty]

@Gilly M, 

Thought you would be interested in some articles about Thiamine (Vitamin B1) and athletic performance. 

I know you said you were taking a B Complex, but high dose Thiamine is needed when there's an insufficiency/deficiency.  

You have to remember that gluten based products have vitamins added in to replace those lost in processing.  When we move to alternative grains, remember they might not have the same amount of vitamins as in enriched gluten white bread.  

Thiamine insufficiency can happen even if you are not Celiac but consume a high carbohydrate diet.  The more carbohydrates you eat, the more Thiamine you need, usually more than what is found in foods.  The more you exercise, the more Thiamine you need.

In thiamine insufficiency, symptoms can fluctuate mysteriously because thiamine intake from foods can fluctuate.

The symptoms you mentioned "neuro/nerve symptoms, constant headaches being the biggie with blurry vision,  and chronic fatigue" are all symptoms of Thiamine insufficiency/deficiency that I had, too.  

I take Benfotiamine and Allithiamine (Thiamax, TTFD) to help with my health problems.  

Thiamine is safe and nontoxic even in high doses, so there's no harm in trying.  

The effects of endurance training and thiamine supplementation on anti-fatigue during exercise

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/

And...

Effects of thiamine supplementation on exercise-induced fatigue

https://pubmed.ncbi.nlm.nih.gov/8815395/

And...

The Effects of Thiamine Tetrahydrofurfuryl Disulfide on Physiological Adaption and Exercise Performance Improvement

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073388/

And...

Effect of physical activity on thiamine, riboflavin, and vitamin B-6 requirements

https://pubmed.ncbi.nlm.nih.gov/10919966/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

Hope this helps!  Keep us posted on your progress!

[Gilly M]

On 11/23/2022 at 6:15 AM, knitty kitty said:

@Gilly M, 

Thought you would be interested in some articles about Thiamine (Vitamin B1) and athletic performance. 

I know you said you were taking a B Complex, but high dose Thiamine is needed when there's an insufficiency/deficiency.  

You have to remember that gluten based products have vitamins added in to replace those lost in processing.  When we move to alternative grains, remember they might not have the same amount of vitamins as in enriched gluten white bread.  

Thiamine insufficiency can happen even if you are not Celiac but consume a high carbohydrate diet.  The more carbohydrates you eat, the more Thiamine you need, usually more than what is found in foods.  The more you exercise, the more Thiamine you need.

In thiamine insufficiency, symptoms can fluctuate mysteriously because thiamine intake from foods can fluctuate.

The symptoms you mentioned "neuro/nerve symptoms, constant headaches being the biggie with blurry vision,  and chronic fatigue" are all symptoms of Thiamine insufficiency/deficiency that I had, too.  

I take Benfotiamine and Allithiamine (Thiamax, TTFD) to help with my health problems.  

Thiamine is safe and nontoxic even in high doses, so there's no harm in trying.  

The effects of endurance training and thiamine supplementation on anti-fatigue during exercise

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/

And...

Effects of thiamine supplementation on exercise-induced fatigue

https://pubmed.ncbi.nlm.nih.gov/8815395/

And...

The Effects of Thiamine Tetrahydrofurfuryl Disulfide on Physiological Adaption and Exercise Performance Improvement

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073388/

And...

Effect of physical activity on thiamine, riboflavin, and vitamin B-6 requirements

https://pubmed.ncbi.nlm.nih.gov/10919966/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

Hope this helps!  Keep us posted on your progress!

Hi ,

Many many thanks for all this information and sharing what has helped you.  I will look at the articles in more detail tomorrow and get back to you - just wanted to give you the heads up that I have received your reply. So sorry for the delay in picking it up - I didn't open my account for a week or so.  I will look back at some of your posts too as it seems you have shared similar symptoms.

I only take 5mg B1 per day!!  As in this B complex product: https://naturelo.co.uk/products/natural-b-complex. And as I start to do more exercise again- tiredness is kicking in, poor sleep and rumination (I have OCD tendencies too which I always put down to being " a worrier"  "perfectionist" but now I am starting to connect the dots!!!)- I've not yet committed to stopping gluten due to my posts aforementioned concerns about adequate calorie intake etc.  And this is soooo useful to know regarding B1 def symptoms if/when I do quit gluten.

I'll  get back to you - maybe with a question or 2 if that's OK.

Million thanks!

[Gilly M]

On 12/1/2022 at 9:19 PM, Gilly M said:

Hi ,

Many many thanks for all this information and sharing what has helped you.  I will look at the articles in more detail tomorrow and get back to you - just wanted to give you the heads up that I have received your reply. So sorry for the delay in picking it up - I didn't open my account for a week or so.  I will look back at some of your posts too as it seems you have shared similar symptoms.

I only take 5mg B1 per day!!  As in this B complex product: https://naturelo.co.uk/products/natural-b-complex. And as I start to do more exercise again- tiredness is kicking in, poor sleep and rumination (I have OCD tendencies too which I always put down to being " a worrier"  "perfectionist" but now I am starting to connect the dots!!!)- I've not yet committed to stopping gluten due to my posts aforementioned concerns about adequate calorie intake etc.  And this is soooo useful to know regarding B1 def symptoms if/when I do quit gluten.

I'll  get back to you - maybe with a question or 2 if that's OK.

Million thanks!

Hi- these articles have certainly opened my eyes to the importance of B1 and how deficiency may indeed fit with me. Very interesting.  So many thanks again for this info.

I started eating a load more carbs when I was recovering from RED-s 4 years ago.  And I still do eat a relatively high CHO diet.  And add in the exercise I've been trying to resume, it is likely I don't ingest enough B1 and/or metabolise it more.

How would I go about finding out the dose I need to take?  Does it depend on the other supplements I take (magnesium, vit D, B complex, B12, K2, iron and sometimes zinc)?  What dose do you take (not to blindly copy you but to see what sort of range I may need to take compared to the 5mg that is in my B complex?)

How do you feel now that you have been on the B1?  And how long did you keep taking it for?

 

[knitty kitty]

@Gilly M,

Hi!  I'm happy to answer any questions.

Figuring out Thiamine dosage depends on many factors like  how deficient you are, how active you are, what you eat, your size, health problems, etc.  So it's really a matter of trying different dosages to see what works for you.  Be your own guinea pig! 

The World Health Organization WHO says a diagnosis of Thiamine deficiency can be made if a person given 500 - 2000 mg for several days can see improvement.  I noticed improvements within an hour of taking Thiamine Hydrochloride.  It was a dramatic difference.  

I started taking Thiamine Hydrochloride (100 mg) tablets. I titrated my dose up until I took 300 mg with each meal and 100 mg with snacks.  That's about 1100 mg or 1.1 grams a day.

Thiamine hydrochloride has to go through a transporter to get inside cells.  Taking high doses of thiamine hydrochloride causes a passive diffusion gradient allowing thiamine to flood the cells.  

Eventually, I found Allithiamine, Lipothiamine, and Benfotiamine.  These are lipid soluble forms which can get into cells easily.  Because they don't need a transporter to get into cells, lower doses of these forms can be used.  

I usually take 200 mg benfotiamine, 100 mg thiamine hydrochloride, and 100 mg Allithiamine with meals. 

I've been taking high dose Thiamine for ten years now.  I'm diabetic type two.  Diabetics lose more thiamine through the kidneys than non-diabetics.  I do not take medications for diabetes.  At one time I took Metformin which blocks the thiamine transporters on cells, causing a functional thiamine deficiency.  I got very ill.  My doctors didn't know what was wrong.  High dose Thiamine keeps my blood glucose levels down.   

Start with Thiamine Hydrochloride.  Don't take a high dose all at once.  Divide doses up so you're taking some every three or four hours.  Add in Benfotiamine and/or Allithiamine.  Benfotiamine has been scientifically shown to promote healing in the gastrointestinal tract.   Allithiamine has been shown to help with neurological effects.   If you start feeling worse, back down on your dose.  This is called the thiamine paradox.  It's your body's way of changing from operating without enough thiamine to operating as it should.  When the paradox passes, try titrating your dose up again to see if there will be more improvement.  

Anemia can cause false negatives on Celiac antibody tests.  (Diabetes can cause false negatives, too.)  You had mentioned supplementing iron and B12.  

Best guinea pig wishes!  

Keep us posted on your progress!

https://www.hormonesmatter.com/thiamine-insufficiency-carbohydrate-consumption/

And ...

https://pubmed.ncbi.nlm.nih.gov/22305197/

Edited December 5, 2022 by knitty kitty
Add link

[Gilly M]

4 hours ago, knitty kitty said:

@Gilly M,

Hi!  I'm happy to answer any questions.

Figuring out Thiamine dosage depends on many factors like  how deficient you are, how active you are, what you eat, your size, health problems, etc.  So it's really a matter of trying different dosages to see what works for you.  Be your own guinea pig! 

The World Health Organization WHO says a diagnosis of Thiamine deficiency can be made if a person given 500 - 2000 mg for several days can see improvement.  I noticed improvements within an hour of taking Thiamine Hydrochloride.  It was a dramatic difference.  

I started taking Thiamine Hydrochloride (100 mg) tablets. I titrated my dose up until I took 300 mg with each meal and 100 mg with snacks.  That's about 1100 mg or 1.1 grams a day.

Thiamine hydrochloride has to go through a transporter to get inside cells.  Taking high doses of thiamine hydrochloride causes a passive diffusion gradient allowing thiamine to flood the cells.  

Eventually, I found Allithiamine, Lipothiamine, and Benfotiamine.  These are lipid soluble forms which can get into cells easily.  Because they don't need a transporter to get into cells, lower doses of these forms can be used.  

I usually take 200 mg benfotiamine, 100 mg thiamine hydrochloride, and 100 mg Allithiamine with meals. 

I've been taking high dose Thiamine for ten years now.  I'm diabetic type two.  Diabetics lose more thiamine through the kidneys than non-diabetics.  I do not take medications for diabetes.  At one time I took Metformin which blocks the thiamine transporters on cells, causing a functional thiamine deficiency.  I got very ill.  My doctors didn't know what was wrong.  High dose Thiamine keeps my blood glucose levels down.   

Start with Thiamine Hydrochloride.  Don't take a high dose all at once.  Divide doses up so you're taking some every three or four hours.  Add in Benfotiamine and/or Allithiamine.  Benfotiamine has been scientifically shown to promote healing in the gastrointestinal tract.   Allithiamine has been shown to help with neurological effects.   If you start feeling worse, back down on your dose.  This is called the thiamine paradox.  It's your body's way of changing from operating without enough thiamine to operating as it should.  When the paradox passes, try titrating your dose up again to see if there will be more improvement.  

Anemia can cause false negatives on Celiac antibody tests.  (Diabetes can cause false negatives, too.)  You had mentioned supplementing iron and B12.  

Best guinea pig wishes!  

Keep us posted on your progress!

https://www.hormonesmatter.com/thiamine-insufficiency-carbohydrate-consumption/

And ...

https://pubmed.ncbi.nlm.nih.gov/22305197/

Wow!  That is invaluable information- the HormonesMatters article is enlightening and has led me to reading a few more articles on their site- and to the book written by the site's founder (bit expensive though for purchase right now).

I have been experiencing many "Wow" and lightbulb moments as I have been reading!  The explanation to symptom fluctuation makes total sense.... based on B1 demand and consumption variation.  To be honest, when I was a competitive athlete, undereating for the energy I expended, I actually had less symptoms- I likely under-ate the carbs needed to fuel - whereas now, in an attempt to recover, I have been eating loads of carbs whilst exercising way less. 

I have been feeling a lot better since I increased my iron supplement BUT it could be totally red herring as I also increased my salt consumption and started taking a high dose B12 and a B complex (albeit a low dose Bcomplex).  So there are likely other factors.  But recently as I exercise more again and increase carbs to fuel, I have been feeling  more fatigue again, fogginess, unsettled brain, difficulty sleeping.  And that sort of general malaise type feeling.  My banging headaches have not come back but I am getting some low grade headaches. And pins and needles. 

Since the B's work together, do you take a B-complex too?  In doses relative to the B1 doses you take?  I have read B6 can be very toxic above 10mg? This may or may not be true.  Do you have any insight or evidence on this?

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.  I'd like to give it a go again- maybe lowER carbs as I don't want my menstrual cycle to go awol again....and have carbs (Paleo style) in there to fuel exercise  

Have you tried LCHF or a variation of this way of eating?  Do you think a change in diet which increases B1 rich foods and decreases the carb content could be enough over time to correct B1 deficiency or is it like B12, and supplementation is usually necessary - I know you can only speak from experience and reading you have done. I guess the answer depends on the severity of deficiency.

Thank you for opening my eyes to the world of B1 - I would never have considered it.

And many thanks for your time.  It is inspiring and excellent news to hear how quickly and profoundly you improved after taking B1 and how you manage your diabetes without medication.  I hope you continue to feel better? 

[knitty kitty]

@Gilly M,

I'm so glad you found this helpful!  You can read my blog for more excerpts of my story and saved research.  

Yes, I am very indebted to Dr. Derrick Lonsdale and Dr. Chandler Marrs.  I bought their book.  (Try the Library.)  Elliot Overton has written articles on Dr. Marrs' website, www.hormonesmatter.com, but has his own website, eonutrition, and has a YouTube channel as well.  

Yes, I take all the B vitamins.  There are B 100 Complex and B 50 Complex supplements.  These have higher levels of B vitamins than your current supplement.  Taking the B vitamins individually is an option.  

No, not all B vitamins should be taken in such high doses as Thiamine.  Cobalamine B12 can be taken in high doses to correct a deficiency (instead of B12 shots).  Niacin can be taken in high doses.  Niacin in high doses can be used to treat hyperlipidemia by doctors. 

Pyridoxine B6 can cause peripheral neuropathy if too much is taken, but resolves if the supplements are stopped.  

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

But keep in mind, the eight B vitamins are dependent on each other to work properly.  

You're taking B12.  B12 needs Folate B9, Pyridoxine B6, Riboflavin B2 and Thiamine B1 and Niacin B3.    Taking just the B12 could deplete one of the other vitamins like folate.  By supplementing all eight, you've got your bases covered.  

No, you cannot eat enough thiamine to correct a deficiency.  Thiamine has to be given in doses high enough to allow thiamine to enter the cells by passive diffusion.     

I have stuck close to the Autoimmune Protocol Diet (AIP diet).

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

However, the AIP diet can be low in Thiamine.  I can't eat shellfish and pork (allergic), both great sources of thiamine.  Veggies don't contain a lot of Thiamine.  Even though I was taking a B Complex, there wasn't enough thiamine in it to correct the deficiency.  

That carbohydrate craving could be your brain's way of telling you to eat more vitamins...usually found in gluten containing products because they are required to be enriched with vitamins lost in processing.  Unfortunately, thiamine mononitrate is usually added.  It's not a bioavailable form and our bodies don't utilize it well.  The more carbohydrates you eat, the more Thiamine is needed to deal with the increased carbohydrate load.  So you end up craving more carbs in a vicious cycle.  The thiamine insufficiency symptoms came back, fatigue, fogginess, and insomnia.

Amenorrhea is a symptom of thiamine deficiency.

Why did you increase your salt?

 

[Gilly M]

15 hours ago, knitty kitty said:

@Gilly M,

I'm so glad you found this helpful!  You can read my blog for more excerpts of my story and saved research.  

Yes, I am very indebted to Dr. Derrick Lonsdale and Dr. Chandler Marrs.  I bought their book.  (Try the Library.)  Elliot Overton has written articles on Dr. Marrs' website, www.hormonesmatter.com, but has his own website, eonutrition, and has a YouTube channel as well.  

Yes, I take all the B vitamins.  There are B 100 Complex and B 50 Complex supplements.  These have higher levels of B vitamins than your current supplement.  Taking the B vitamins individually is an option.  

No, not all B vitamins should be taken in such high doses as Thiamine.  Cobalamine B12 can be taken in high doses to correct a deficiency (instead of B12 shots).  Niacin can be taken in high doses.  Niacin in high doses can be used to treat hyperlipidemia by doctors. 

Pyridoxine B6 can cause peripheral neuropathy if too much is taken, but resolves if the supplements are stopped.  

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

But keep in mind, the eight B vitamins are dependent on each other to work properly.  

You're taking B12.  B12 needs Folate B9, Pyridoxine B6, Riboflavin B2 and Thiamine B1 and Niacin B3.    Taking just the B12 could deplete one of the other vitamins like folate.  By supplementing all eight, you've got your bases covered.  

No, you cannot eat enough thiamine to correct a deficiency.  Thiamine has to be given in doses high enough to allow thiamine to enter the cells by passive diffusion.     

I have stuck close to the Autoimmune Protocol Diet (AIP diet).

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

However, the AIP diet can be low in Thiamine.  I can't eat shellfish and pork (allergic), both great sources of thiamine.  Veggies don't contain a lot of Thiamine.  Even though I was taking a B Complex, there wasn't enough thiamine in it to correct the deficiency.  

That carbohydrate craving could be your brain's way of telling you to eat more vitamins...usually found in gluten containing products because they are required to be enriched with vitamins lost in processing.  Unfortunately, thiamine mononitrate is usually added.  It's not a bioavailable form and our bodies don't utilize it well.  The more carbohydrates you eat, the more Thiamine is needed to deal with the increased carbohydrate load.  So you end up craving more carbs in a vicious cycle.  The thiamine insufficiency symptoms came back, fatigue, fogginess, and insomnia.

Amenorrhea is a symptom of thiamine deficiency.

Why did you increase your salt?

 

Hi there,

Thank you for sharing this with me.  I have read some of your blog posts - I don't need to buy the book now!! You have researched this in depth and know/have experienced so much; I am very grateful for you sharing all this on the forum.

I was like you used to be too: not taking any supplements, trying to get everything from foods.  It seems like when you need to take high doses of one, so many other vits/mins need supported and it can get a bit of a tangled web - vit d needs K2 and Mg, iron may need supported by copper and zinc in high doses, iron may also need B12 to put it to use if B12 low, but then B12 needs supported by the other B vits and so on and so so!!!  I now have a "supplement cupboard" !!!!!

But I do understand from reading about so many others cases (like you) and also personal experience , that is can be necessary and life-saving.

I increased my salt intake for a few reasons- 1) my BP can be low- esp diastolic, sometimes as low as 90/58 sys:dias.  I started taking magnesium so I was trying to support this with sodium and potassium  2) I don't eat much processed foods   3) I sweat alot even just on long walks 4) I do dip in and out of low carb eating which can raise salt needs  5)  My sodium on my bloods came back as low  6) I get a lot of headaches and (although this could be MANY things) I do think increasing salt has helped (it can be hard to tell when there are so many variable factors)

I'm getting a full blood panel done this week, so I'll see where I am with iron/B12 etc and it may be that I am able to reduce the B12 dose now.  Which means maybe I won't need more than a B complex.  As far as I am aware I can eat all the B1 rich foods so I may try to focus on these, keep to a moderate but not high CHO diet and see how I feel.  Now I am armed with more knowledge about B1 I know I can then add a higher dose of this into the mix.

THANK YOU SO MUCH AGAIN for sharing all this info.  I hope when I feel more certain about the key ingredients in my path to wellness, I can share my journey too xx

 

 

[knitty kitty]

@Gilly M,

I am thrilled that you have found my blog useful.  I'm grateful Scott Adams lets me share here so others don't have to reinvent the wheel.  

I asked about the salt intake because thiamine deficiency can manifest as Postural Orthostatic Tachycardia Syndrome (POTS) resulting in low blood pressure and increasing salt intake is recommended.  

The sweating is affected by thiamine deficiency, too.  The Autonomic nervous system controls sweating and it can get out of order in Thiamine deficiency.  

http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/#:~:text=The ANS together with the limbic system act,among the commonest manifestations of the Gardasil effect.

Yes, I do love to hear updates from others on our bumpy Celiac journey!  Stay in touch!

{{{HUGS}}}

[Gilly M]

On 12/5/2022 at 9:23 AM, knitty kitty said:

@Gilly M,

Hi!  I'm happy to answer any questions.

Figuring out Thiamine dosage depends on many factors like  how deficient you are, how active you are, what you eat, your size, health problems, etc.  So it's really a matter of trying different dosages to see what works for you.  Be your own guinea pig! 

The World Health Organization WHO says a diagnosis of Thiamine deficiency can be made if a person given 500 - 2000 mg for several days can see improvement.  I noticed improvements within an hour of taking Thiamine Hydrochloride.  It was a dramatic difference.  

I started taking Thiamine Hydrochloride (100 mg) tablets. I titrated my dose up until I took 300 mg with each meal and 100 mg with snacks.  That's about 1100 mg or 1.1 grams a day.

Thiamine hydrochloride has to go through a transporter to get inside cells.  Taking high doses of thiamine hydrochloride causes a passive diffusion gradient allowing thiamine to flood the cells.  

Eventually, I found Allithiamine, Lipothiamine, and Benfotiamine.  These are lipid soluble forms which can get into cells easily.  Because they don't need a transporter to get into cells, lower doses of these forms can be used.  

I usually take 200 mg benfotiamine, 100 mg thiamine hydrochloride, and 100 mg Allithiamine with meals. 

I've been taking high dose Thiamine for ten years now.  I'm diabetic type two.  Diabetics lose more thiamine through the kidneys than non-diabetics.  I do not take medications for diabetes.  At one time I took Metformin which blocks the thiamine transporters on cells, causing a functional thiamine deficiency.  I got very ill.  My doctors didn't know what was wrong.  High dose Thiamine keeps my blood glucose levels down.   

Start with Thiamine Hydrochloride.  Don't take a high dose all at once.  Divide doses up so you're taking some every three or four hours.  Add in Benfotiamine and/or Allithiamine.  Benfotiamine has been scientifically shown to promote healing in the gastrointestinal tract.   Allithiamine has been shown to help with neurological effects.   If you start feeling worse, back down on your dose.  This is called the thiamine paradox.  It's your body's way of changing from operating without enough thiamine to operating as it should.  When the paradox passes, try titrating your dose up again to see if there will be more improvement.  

Anemia can cause false negatives on Celiac antibody tests.  (Diabetes can cause false negatives, too.)  You had mentioned supplementing iron and B12.  

Best guinea pig wishes!  

Keep us posted on your progress!

https://www.hormonesmatter.com/thiamine-insufficiency-carbohydrate-consumption/

And ...

https://pubmed.ncbi.nlm.nih.gov/22305197/

Hi Knitty Kitty,

What a journey this is!  I hope you don't mind me coming back to you to ask more questions.  A little update:

Since we last wrote, I didn't change a whole lot to be honest.  I think I had indoctrinated my brain ver the past 5 years, with all the RED-S recovery blogs/books/articles I have read about eg. not going low carb, eating all the foods, not ever starving self of any foods again etc etc.  This worked for me at the start to help me recovery from amenorhoea; but this amazing new energy, great health, abundant vitality that was supposed to eventfully come never did- after 4 years!!  In fact, my health worsened “Insanity is doing the same thing over and over and expecting different results."  Yes that has likely been me!

So since December my symptoms have got progressively worse again.  I halfheartedly tried gluten free dairy free stints, judiciously added in more iron again, stopped trying to exercise as it was just exhausting me.  But I had that same groundhog feeling of blindly just going round and round in circles and hoping something was going to miraculously change. The big stumbling block for me was every time I cut out gluten or lowered carbs I did sort of feel better but I always felt RAVENOUS and went back to eating the cereal etc and momentarily felt "nourished"  But then I revisited our conversation to hope something would jolt me into truely sticking to something.  And I revisited Marrs and Lonsdale.  And that led me back to Elliot Overton.

I read more about oxalates.  I reduced them.  I started 100mg thiamine hydrochloride.  I still ate gluten and other grains.  But stopped spinach, buckwheat, nuts, most chocolate and most potatoes.  And within a day- symptoms worsened big time - headaches, severe nausea, blurry vision as though I'd been knock unconscious,  poor sleep.  My immediate reaction - ""What is making me worse?!!!  I must not tolerate B1.  Maybe I've cut out too much carbs again!!""  But then the next day or 2- Oh My Gosh!!- stools flooded with crystals- upon reading more of the above sources, I realised these were oxalates!!!  Things are starting to click together.  I finally finally finally finally finally!!!! feel I am on the right track.

What you said before about my craving the carbs/cereals/breads, that it is likely because of nutrient deficiency- YES! I can see that now.  Now I take B1 and other B vits, I don't feel the same cravings.  I am not no carb- I am eating fruits and some white rice. Corn I am not sure but will see how I go without.   I'm eating meats/fish/eggs/low oxalate veggies and fruits/white rice/honey/occasional treat like a rice based biscuit(Crumbles).  I've stopped nuts/other grains/chocolate/the high oxalate veggies and fruits (I joined the Facebook Group  Trying Low Oxalate).  I'm adding in a bit of dark chocolate to avoid severe oxalate dumping.

Sorry for the long summary.  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? I started with 100mg Th HCl 2 weeks ago but it was too much to start with (I think this is the case, due to the awful symptoms- how much due to B1 versus low oxalate I'm not sure) So I dropped to 25mg and now I 'm at 50mg 2 x daily. 

Do you recommend a brand for benfotiamine?

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

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?

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.

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??

This is such a long post Knitty Kitty!  Sorry!  Please just answer when and if you have time.  How are you feeling now you have been on your regime for a while (years?)?  Thank you so much for opening this door and pointing me towards sources that I truely believe in now.  It is all starting to make sense- high sport intensity/almost vegetarian diet/going "all in" and likely experiencing some Refeeding symptoms/getting Lyme which further depleted me/eating high oxalate diet/perhaps having NCGS which would worsen my gut state and increase oxalate absorption.... and so on......

I will continue to research.  I tend to get bogged down in the minutiae and it takes me a while to process things so having other people to share and learn from is highly valuable and greatly appreciated.

Thanks a million

Kindly

Gillian

 

[Scott Adams]

What is your longest stint being gluten-free? Non-celiac gluten sensitivity could be your issue, but normally you would see symptom improvement after going gluten-free for a few weeks.

[Gilly M]

1 hour ago, Scott Adams said:

What is your longest stint being gluten-free? Non-celiac gluten sensitivity could be your issue, but normally you would see symptom improvement after going gluten-free for a few weeks.

Hi Scott,  Thanks for reading and responding to my message.  Over the past 5 years since my health deteriorated, the longest gluten-free stint has likely been around 2-3 weeks, but maybe not strict ie. checking every ingredient in a product/eating out.  During the various "gluten-free stints" I did feel better in some of them and but not in others. 

I think the B1/oxalate toxicity/deficiency in other vits and mins have been confounding things.  I often tried to reduce/cut out dairy too.  Substitutions for dairy and gluten were often high oxalate foods- I now realise in hindsight (for the dairy I tried to substitute foods which I thought were high in calcium but I now realise they were high in calcium due to their very high oxalate content! eg spinach, almonds, tahini, oranges).  And B1 deficiency would fit with my symptoms and history - years of high intensity sport and competition/high carb diet/Refeeding when trying to recovery from RED-s(especially carbs so again further depleting B1).

I have read that gluten sensitivity can compromise gut function which may increase oxalate absorption.  So I am not willing to take the risk.  I am going to assume I am gluten sensitive, quit eating it and address oxalate toxicity and B vits/Magnesium.

So much to learn!

This site helped me to find the current healing route I am on- for which I will always be grateful; I feel already I am making progress.  Thank-you  

 

[Scott Adams]

It's definitely not easy to eliminate all gluten, and the article below may help. Let us know how things go. I think being 100% gluten-free for at least a couple of months would be necessary for you to see if it helps.

 

[Gilly M]

15 hours ago, Scott Adams said:

It's definitely not easy to eliminate all gluten, and the article below may help. Let us know how things go. I think being 100% gluten-free for at least a couple of months would be necessary for you to see if it helps.

 

Hi Scott,

Many thanks.  In your opinion and experience over the years Scott, do you find most people can tolerate other grains like corn and rice?  I'm wary of the higher oxalate grains now,like buckwheat and quinoa after finding I am excreting oxalate crystals!! 

I used to have no fear of carbs but since my whole journey into fixing my health started, I am now very wary of them (so many credible sources emphasising that 75-150g zone).  I want to get back into competing in endurance sport again and I just don't feel low carb is for me.  But without gluten and cutting back on potatoes/sweet potatoes (oxalates) there are limited carb choices- except fruit of course.  I don't want to go back to a super high carb diet, but low carb doesn't appeal to me either.

Anyway!  Do you find many people can enjoy good health eating many of the other NG grains?  I find myself sticking only to rice, but then there's the whole arsenic thing!!

I appreciate you can only speak from what you've seen over the years in posts.

Gillian 

[Scott Adams]

Personally I eat many other non-gluten grains regularly, including corn, but I don't have an oxalate issue so I might not be the best person to ask. I do know that a majority of celiacs can tolerate the vast majority of gluten-free grains, especially after the 1-2 year healing phase is complete.

[Gilly M]

3 hours ago, Scott Adams said:

Personally I eat many other non-gluten grains regularly, including corn, but I don't have an oxalate issue so I might not be the best person to ask. I do know that a majority of celiacs can tolerate the vast majority of gluten-free grains, especially after the 1-2 year healing phase is complete.

Thank you for this feedback Scott  

[MiriamW]

Is there any chance that you could have black mould in the house without knowing about it? I often read/hear about stories where people experienced similar health issues like you describe, for years they can't work out what the problem is until they discover hidden mould in their house. It's worth investigating too. 

 

[Gilly M]

1 hour ago, MiriamW said:

Is there any chance that you could have black mould in the house without knowing about it? I often read/hear about stories where people experienced similar health issues like you describe, for years they can't work out what the problem is until they discover hidden mould in their house. It's worth investigating too. 

 

Thank you for your reading my post and replying   I investigated mould a few years ago when I was also diagnosed with Lyme disease (bulls eye rash and very ill).  I had some black mould in my property too at the time,  I got pretty paranoid about it after that and was convinced I was super sensitive to it. But I also investigated other issues such as diet as deep down I knew that it had a part to play.

 I finally feel things are starting to shift.  Since I started gluten free, B1 therapy (and electrolytes) and lower oxalate diet.  I no longer feel like I am "poisoned" every day.  I still get fatigue, sore muscles and some headaches- but I think that is electrolyte imbalances (B1 using them up as it goes to work, a lower carb diet excreting more electrolytes and the oxalate dumping I am definitely experiencing using up electrolytes too).  But I am consistently feeling better and sincerely hope this is the main underlying factor.  

Thanks again for the thoughts.  I'll see how things go along this path  

 

 

[MiriamW]

That's fantastic. Best wishes and keep us posted

[Russ H]

Hi Gilly,

It is curious that you are passing oxalate crystals. Do you know for a fact that you are passing them? Oxalic acid is not particularly toxic in itself, it is just that it combines with calcium to produce calcium oxalate, which can cause kidney stones. Risk factors are not drinking enough water, consuming a lot of oxalic acid containing food, and inflammatory bowel disease. Given all your other symptoms, have you been investigated for IBD?

[Gilly M]

10 hours ago, Russ H said:

Hi Gilly,

It is curious that you are passing oxalate crystals. Do you know for a fact that you are passing them? Oxalic acid is not particularly toxic in itself, it is just that it combines with calcium to produce calcium oxalate, which can cause kidney stones. Risk factors are not drinking enough water, consuming a lot of oxalic acid containing food, and inflammatory bowel disease. Given all your other symptoms, have you been investigated for IBD?

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!