Headaches / Migraines and Hypoglycaemia

[Sarah Grace]

I've was diagnosed celiac over 10 years ago when in mid 50s.  For a long time I have been getting headaches at night and in the morning and I suffer a lot of insomnia.  The headaches can be very severe and sometimes develop into a full migraine but other times they wear off within an hour of getting up and eating breakfast.  I have self diagnosed this a hypoglycaemia.  The medical profession in UK, where I live, does not seem to know anything of this and simply tests me for diabetes, which I do not have.  I know this condition is diet related and caused by carbohydrates, I avoid eating in the evenings.  Whatever I do, this condition seems to be getting worse and is very difficult to control.  Any advice would be much appreciated.

[trents]

Have you tried a diet with a lower carb, higher fat content, something similar to the Keto diet? Are you familiar with the ketogenic diet? Fat satisfies and so curbs hunger and levels out blood sugar.

[knitty kitty]

Welcome to the forum, @Sarah Grace,

I had symptoms like yours.  I thought at first it was hypoglycemia, but having type two diabetes, my blood glucose meter didn't register a low.  If anything, my blood glucose levels were slightly high, but quickly returned to normal with me stirring around after waking.  

I was certain dehydration, having similar symptoms, was not the cause.  A nurse advised me, a very long time ago, in order to stay well hydrated that one should drink a cup of water every time one visits the loo.  Drink sufficient water to have to make that visit about every two hours during the day.  The quick pinch test confirmed no dehydration.  If you pinch the skin on the back of your hand or arm, and the skin stays "tented" and takes a few seconds to return to normal, you're probably dehydrated.

My problem turned out to be high histamine levels.  Our bodies can make histamine.  Plants and other animals make histamine, too, and, so there's histamine in our food.  

Mast cells in our digestive tract make and release histamine as part of the autoimmune response in celiac disease, causing inflammation.  But, among doing other things, histamine is also a useful neurotransmitter.  Histamine levels increase in the brain in the morning, causing us to wake up.  High histamine levels can keep us awake, too, hence insomnia.  High histamine levels also can cause migraines.  

Intestinal Bacteria can also make histamine and release it, which can then be absorbed into our bloodstream.  High histamine levels can worsen gastrointestinal symptoms.  If you eat a diet high in carbohydrates, those carbohydrate-loving, histamine-producing bacteria can colonize the small intestine, resulting in Small Intestinal Bacterial Overgrowth (SIBO).  Following a Paleo Diet (a diet low in carbohydrates) starves out the SIBO bacteria.  

Eating a high carbohydrate diet can precipitate a Thiamine (Vitamin B1) deficiency disorder.  Thiamine is required to turn the carbohydrates into energy for the body. 

Having SIBO can indicate an insufficiency of Thiamine.  Thiamine has antibacterial and antiviral properties and helps keep bacteria in the gut within check.  Thiamine helps Mast Cells not release histamine.  Mast Cells that do not have sufficient Thiamine release histamine at the slightest provocation.  

Our bodies can break down histamine, if it has enough of the vitamins and minerals needed to make an enzyme, Diamine Oxidase (DAO).  Pyridoxine B6, copper, and Vitamin C are needed.  DAO supplements are available without prescription. 

Vitamin D helps lower and regulate inflammation in the body.  

Vitamins and minerals such as these can be at suboptimal levels.  Inflammation in the intestines can make absorbing essential nutrients like Thiamine difficult.  The eight B vitamins are water soluble and cannot be stored long, so we need to consume them every day in foods and supplements.  Thiamine can become low within three weeks.  

Supplementing with vitamins and minerals helps boost absorption so the body can function properly.  

Always check with your doctor and nutritionist before supplementing.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease, even if they've been gluten free for years.   

References:

Histamine Intolerance: Symptoms, Diagnosis, and Beyond

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11054089/

Dysbiosis and Migraine Headaches in Adults With Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9506300/

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9147846/

Mast Cells in Gastrointestinal Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

Mast cells are associated with the onset and progression of celiac disease

https://pubmed.ncbi.nlm.nih.gov/27619824/

Diamine oxidase supplementation improves symptoms in patients with histamine intolerance

https://pubmed.ncbi.nlm.nih.gov/31807350/

Histamine Intolerance—The More We Know the Less We Know. A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/

Hope this helps!

[glucel]

hi knitty, I figured while reading the first few paragraphs of your post that thiamin would come into the conversation, haha. Anyway, I just had annual physical and asked for the b vitamins and others to be incl in the blood test. B12, folate, and b6 came back about mid range but they did not take enough blood to complete the b1 and b2. Are the good results for b12,folate, b6 a good indication that thiamin is ok or should I have another test?

[cristiana]

Hi @Sarah Grace

I'm a British coeliac too, and have had quite a number of different types of migraine.

***Are you under a gastroenterologist and receiving annual coeliac blood tests to test for compliance, and perhaps also for deficiencies?  If not, I think that is worth considering.  If gluten is still sneaking into your diet that could be the issue.***

That said, for me there was a huge improvement when I went gluten free, but I still get nauseating migraines from time to time, and a new type since going gluten free - aura migraines where I lose my central vision (the middle of my vision looks as if water is running down glass).  This tends to be triggered by small screens and close work.   

I know that in the past thirst was a massive trigger for me, and also low blood sugar.   Another contributor for me is tension in my neck caused by poor posture or cold weather, and certain light conditions, like low sun in the winter, can start one up. 

One other thought - have you looked into sleep apnea, which can cause migraines?  

But in any case, I think I'd be inclined to contact the Migraine Trust if you haven't already.  

https://migrainetrust.org/

Cristiana

 

Edited October 7, 2024 by cristiana

[knitty kitty]

10 hours ago, glucel said:

hi knitty, I figured while reading the first few paragraphs of your post that thiamin would come into the conversation, haha. Anyway, I just had annual physical and asked for the b vitamins and others to be incl in the blood test. B12, folate, and b6 came back about mid range but they did not take enough blood to complete the b1 and b2. Are the good results for b12,folate, b6 a good indication that thiamin is ok or should I have another test?

Not really.  Blood tests for vitamin deficiencies are not accurate. 

You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.  

Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).  

Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.  

I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.  

Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.  

P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.

Edited October 8, 2024 by knitty kitty
Typo correction, add p.s.

[glucel]

8 hours ago, knitty kitty said:

Not really.  Blood tests for vitamin deficiencies are not accurate. 

You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.  

Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).  

Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.  

I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.  

Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.  

P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.

OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.

[Sarah Grace]

Many thanks to everyone for the advice received and especially to Knitty Kitty.  I have ordered a one month supply of Benfotiamine and very much look forward to trying it.  The expression "I felt like I was dying" really resonates with me.  I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in her very detailed post.

Clearly, there is other stuff that I should be trying, but I can only cope with one thing at a time at present!

I will be back to let you know if the Benfotiamine, which should arrive in the next few days, has had any impact.🙂

[cristiana]

20 hours ago, knitty kitty said:

Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.  

Good point, they should never have cut this from the syllabus.

 

Edited October 9, 2024 by cristiana

[knitty kitty]

On 10/8/2024 at 10:30 AM, Sarah Grace said:

Many thanks to everyone for the advice received and especially to Knitty Kitty.  I have ordered a one month supply of Benfotiamine and very much look forward to trying it.  The expression "I felt like I was dying" really resonates with me.  I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in her very detailed post.

Clearly, there is other stuff that I should be trying, but I can only cope with one thing at a time at present!

I will be back to let you know if the Benfotiamine, which should arrive in the next few days, has had any impact.🙂

Hello there! 

Just wondering how things are going for you.  Did you try the Benfotiamine?  I'm always curious how others fare after taking thiamine.  Hope you can post an update.

Hope you're doing well!  

[glucel]

hey knitty, thanks for the follow up. I did buy the benfotiamine before I saw a couple of the side effects that concerned me esp bracardia. I already have irregular heart beat and have had elevated liver enzymes before. I lowered the count by taking milk thistle in case anyone interested. I realize that many side effects are simply for legal protection but at my age and as a recovering heart patient can not take risk.

Anyway, been strictly gluten-free since we last talked. I did add 200 mg of vit b1 in addition to the b complex. Not as much b1 as you suggested because of my conservative nature but at least an attempt. I still have substantial bloating which unfortunately is probably not caused by gluten, as I was hoping that gluten-free would clear it up a bit. 

I wish that I could report a major benefit from going gluten-free but I can't. But I never got desperately ill as many have reported here and my poor brother who was completely overcome til diagnosed. 

Take care

 

[Sarah Grace]

16 hours ago, knitty kitty said:

Hello there! 

Just wondering how things are going for you.  Did you try the Benfotiamine?  I'm always curious how others fare after taking thiamine.  Hope you can post an update.

Hope you're doing well!  

Hello Knitty Kitty, Many thanks for asking about my progress.  Its mixed....  I've been taking Benfotiamine since November.  I started on 300mg, but I didn't notice any change.  Increased to 900mb in 300mg tablets throughout the day and initially it seemed to be a cure.  But then the Hypoglycaemia and migraines started to return...it's really very difficult for me to control my diet.  I'm still taking the Benfotiamine but I now take the Benfotiamine in the evening and usually about 600mg after my early evening meal.  I'm still very sensitive to carbs and especially alcohol and sugar, which makes any social activity really difficult especially in the evenings and having to avoid all gluten as well....anyway I guess most members of this forum are very familiar with this.  

However, I do think the Benfotiamine is very helpful.  I still get significant vertigo (very wobbly at random moments) but I think my brain fog and insomnia have improved.  I'm quite active physically (gardening and dog walking etc), so need carbs for this.  I am a bit of a coffee addict and wonder what impact that might have?

Any suggestions that you have that might further improve my diet and management of the hypoglycaemia would be much appreciated, as I definitely have failed to conquer the problem.

[trents]

If I may put my two cents in here . . .

Coffee (caffeine) is a double-edged sword when it comes to headaches. It can relieve them (that's why caffeine is put in many over the counter pain relievers) but it can also cause them - particularly if you consume coffee/tea/soda often and regularly and then are in a situation where you have to go without it for a longer stretch than you are used to. Those who suffer from migraines may likely be more sensitive to the effects of caffeine or the withdrawal of it I'm thinking. And then there is the potential negative impact caffeine can have on sleep patterns for many people. Disruption of sleep patterns is also a migraine trigger for some. I speak as a migraine sufferer myself. 

[knitty kitty]

On 3/15/2025 at 7:00 AM, glucel said:

hey knitty, thanks for the follow up. I did buy the benfotiamine before I saw a couple of the side effects that concerned me esp bracardia. I already have irregular heart beat and have had elevated liver enzymes before. I lowered the count by taking milk thistle in case anyone interested. I realize that many side effects are simply for legal protection but at my age and as a recovering heart patient can not take risk.

Anyway, been strictly gluten-free since we last talked. I did add 200 mg of vit b1 in addition to the b complex. Not as much b1 as you suggested because of my conservative nature but at least an attempt. I still have substantial bloating which unfortunately is probably not caused by gluten, as I was hoping that gluten-free would clear it up a bit. 

I wish that I could report a major benefit from going gluten-free but I can't. But I never got desperately ill as many have reported here and my poor brother who was completely overcome til diagnosed. 

Take care

 

I'm so glad you're still taking Benfotiamine!  It's interesting to note that elevated liver enzymes and brachycardia are symptoms of thiamine deficiency and you've had these before taking the Benfotiamine.  Many cardiac patients have low thiamine.  I have also had these, but since taking Benfotiamine I no longer have them.  

I hope you can find the courage to increase your dose to 300 mg of thiamine.  Something extraordinary happens at higher doses of thiamine, a whole different array of health benefits starts happening.  I was sceptical, in the beginning, too, but took the plunge and have never looked back.  The difference is really astounding.  Thiamine is nontoxic and safe even in high doses.  I took mine in small doses throughout the day with magnesium. (Mine added up to 2000 mg a day at my most ill without any side effects.)

Are you taking magnesium?  Any form of thiamine will work better if magnesium is taken, too.  Magnesium and thiamine make enzymes essential to life.  Celiacs are frequently low in magnesium.   (Magnesium Threonate is a really good kind to take.)

I found taking tryptophan before bed really helps relieve the bloating.  Tryptophan helps heal the intestines and is needed to make Serotonin, a neurotransmitter that helps regulate intestinal functions.  

Some people don't get digestive symptoms, they get other symptoms outside of the digestive tract, like brachycardia or tachycardia, thyroid problems, arthritis, or liver damage.  Gluten free and making sure you get sufficient vitamins and minerals will help in the long run.

Thanks for giving us an update.  Keep us posted on the next leg of your journey!

Edited March 17, 2025 by knitty kitty
Typo correction

[knitty kitty]

On 3/15/2025 at 2:51 PM, Sarah Grace said:

Hello Knitty Kitty, Many thanks for asking about my progress.  Its mixed....  I've been taking Benfotiamine since November.  I started on 300mg, but I didn't notice any change.  Increased to 900mb in 300mg tablets throughout the day and initially it seemed to be a cure.  But then the Hypoglycaemia and migraines started to return...it's really very difficult for me to control my diet.  I'm still taking the Benfotiamine but I now take the Benfotiamine in the evening and usually about 600mg after my early evening meal.  I'm still very sensitive to carbs and especially alcohol and sugar, which makes any social activity really difficult especially in the evenings and having to avoid all gluten as well....anyway I guess most members of this forum are very familiar with this.  

However, I do think the Benfotiamine is very helpful.  I still get significant vertigo (very wobbly at random moments) but I think my brain fog and insomnia have improved.  I'm quite active physically (gardening and dog walking etc), so need carbs for this.  I am a bit of a coffee addict and wonder what impact that might have?

Any suggestions that you have that might further improve my diet and management of the hypoglycaemia would be much appreciated, as I definitely have failed to conquer the problem.

@Sarah Grace,

Thanks for answering.  I'm sorry you're not bouncing back as quickly as we would like to see.  

Are you taking a B Complex?  Thiamine interacts with each of the other B vitamins somewhere along the line.  Taking a B Complex helps boost absorption and ensures there's plenty of the other B's for thiamine to work with.

Thiamine needs magnesium to make enzymes, too.  Are you taking a magnesium supplement?  I really like Magnesium L-threonate.  I had been supplementing with magnesium, but I tried Magnesium L-threonate after reading articles on PubMed which said it improves cognition, migraines, memory, mood, and intestinal permiability!  The difference has been very noticeable.  Magnesium L-threonate crosses the blood brain barrier easier than other forms of magnesium.  Low magnesium in the brain contributes to migraine and depression.  Taking magnesium regularly can help prevent more migraines and is helpful during migraine. 

Magnesium L-threonate has also been shown to improve insulin resistance and improve glucose metabolism.  This really helps with my Type Two diabetes.  

A form of thiamine called tetrahydrofurfuryl disulfide (TTFD) is also beneficial for brain function since it crosses the blood brain barrier very easily.  Since you are so active outside, you might try this form since it improves athletic performance, strength, and endurance as well.  I like to take TTFD with Magnesium L-threonate.  Really a great combination.  I'm taking it for improving cognition.  

I increased my Omega Threes because the brain is mostly fat.  Olive oil and avocado oil are good sources.  Our bodies can burn both carbs and fat for fuel.  Maybe having some healthy fats in the evening meal would keep your blood glucose more stable and improve your morning hypoglycemia.  Fasting seems to be making the hypoglycemia worse.  If we don't have sufficient thiamine or magnesium, our bodies store carbs as fat.  I feel better on a low carb/high healthy fat diet.  I stick close to the AutoImmune Protocol Diet, but I've added in some carbs.  Yes, it's really easy to over do it on carbs. I found taking a drink of water before snacking on carbs helps me realize I was just thirsty, or the water fills my tummy and I'm not really hungry.  

The tannins in coffee and tea can cleave thiamine in two, making it useless.  Thiamine and coffee need to be taken an hour or two apart.

Alcohol is going to contribute to further damage of the intestines and cause vitamin malabsorption, thiamine and niacin especially.  Tryptophan, a form of niacin, helps immensely because it helps heal the intestines and is needed to make Serotonin, that feel good neurotransmitter. Tryptophan is very relaxing, so much so that I take it before bed time along with magnesium Threonate and don't have a problem with insomnia.  You might try taking your Benfotiamine in the morning and throughout day, but not in the evenings.  Since the B vitamins are involved in energy production, the Benfotiamine could be contributing to the insomnia.  I've kept myself awake taking thiamine too close to bedtime.  Tryptophan and magnesium at bedtime.  Passion flower tea or extract is helpful for falling asleep without any side effects, no groggy feeling the next day.  

Are you taking Vitamin D?  Vertigo can happen with Vitamin D deficiency or thiamine deficiency.  Thiamine is needed to activate Vitamin D.  Vitamin D levels should be in the eighties to get the most benefit. 

I hope this helps.  Let me know if you have more questions.  Best wishes for you!

[glucel]

6 hours ago, knitty kitty said:

I'm so glad you're still taking Benfotiamine!  It's interesting to note that elevated liver enzymes and brachycardia are symptoms of thiamine deficiency and you've had these before taking the Benfotiamine.  Many cardiac patients have low thiamine.  I have also had these, but since taking Benfotiamine I no longer have them.  

I hope you can find the courage to increase your dose to 300 mg of Benfotiamine.  Something extraordinary happens at higher doses of thiamine, a whole different array of health benefits starts happening.  I was sceptical, in the beginning, too, but took the plunge and have never looked back.  The difference is really astounding.  Thiamine is nontoxic and safe even in high doses.  I took mine in small doses throughout the day with magnesium. (Mine added up to 2000 mg a day at my most ill without any side effects.)

Are you taking magnesium?  Any form of thiamine will work better if magnesium is taken, too.  Magnesium and thiamine make enzymes essential to life.  Celiacs are frequently low in magnesium.   (Magnesium Threonate is a really good kind to take.)

I found taking tryptophan before bed really helps relieve the bloating.  Tryptophan helps heal the intestines and is needed to make Serotonin, a neurotransmitter that helps regulate intestinal functions.  

Some people don't get digestive symptoms, they get other symptoms outside of the digestive tract, like brachycardia or tachycardia, thyroid problems, arthritis, or liver damage.  Gluten free and making sure you get sufficient vitamins and minerals will help in the long run.

Thanks for giving us an update.  Keep us posted on the next leg of your journey!

Sorry I was not clear. I never took benfotiamine due to the alleged side effects. I never had irregular heart beat before bypass surgery or at least it was never detected.

[knitty kitty]

@glucel,

I encourage you to reconsider Benfotiamine. Talk to your doctor!

There's many articles that have found a link between thiamine and heart problems.  

Here are some articles worth further discussion with your doctor:

Pyruvate dehydrogenase activity and quantity decreases after coronary artery bypass grafting: a prospective observational study

(This article found thiamine deficiency can occur after heart bypass surgery, so it's not surprising you developed bradycardia after your surgery.  Bradycardia is a symptom of thiamine deficiency.)

https://pmc.ncbi.nlm.nih.gov/articles/PMC4472607/

 

Association of vitamin B1 with cardiovascular diseases, all-cause and cardiovascular mortality in US adults

https://pmc.ncbi.nlm.nih.gov/articles/PMC10502219/

Association of thiamine administration and prognosis in critically ill patients with heart failure

https://pmc.ncbi.nlm.nih.gov/articles/PMC10076601/

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

Hiding in Plain Sight: Modern Thiamine Deficiency

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

[Sarah Grace]

6 hours ago, knitty kitty said:

@Sarah Grace,

Thanks for answering.  I'm sorry you're not bouncing back as quickly as we would like to see.  

Are you taking a B Complex?  Thiamine interacts with each of the other B vitamins somewhere along the line.  Taking a B Complex helps boost absorption and ensures there's plenty of the other B's for thiamine to work with.

Thiamine needs magnesium to make enzymes, too.  Are you taking a magnesium supplement?  I really like Magnesium L-threonate.  I had been supplementing with magnesium, but I tried Magnesium L-threonate after reading articles on PubMed which said it improves cognition, migraines, memory, mood, and intestinal permiability!  The difference has been very noticeable.  Magnesium L-threonate crosses the blood brain barrier easier than other forms of magnesium.  Low magnesium in the brain contributes to migraine and depression.  Taking magnesium regularly can help prevent more migraines and is helpful during migraine. 

Magnesium L-threonate has also been shown to improve insulin resistance and improve glucose metabolism.  This really helps with my Type Two diabetes.  

A form of thiamine called tetrahydrofurfuryl disulfide (TTFD) is also beneficial for brain function since it crosses the blood brain barrier very easily.  Since you are so active outside, you might try this form since it improves athletic performance, strength, and endurance as well.  I like to take TTFD with Magnesium L-threonate.  Really a great combination.  I'm taking it for improving cognition.  

I increased my Omega Threes because the brain is mostly fat.  Olive oil and avocado oil are good sources.  Our bodies can burn both carbs and fat for fuel.  Maybe having some healthy fats in the evening meal would keep your blood glucose more stable and improve your morning hypoglycemia.  Fasting seems to be making the hypoglycemia worse.  If we don't have sufficient thiamine or magnesium, our bodies store carbs as fat.  I feel better on a low carb/high healthy fat diet.  I stick close to the AutoImmune Protocol Diet, but I've added in some carbs.  Yes, it's really easy to over do it on carbs. I found taking a drink of water before snacking on carbs helps me realize I was just thirsty, or the water fills my tummy and I'm not really hungry.  

The tannins in coffee and tea can cleave thiamine in two, making it useless.  Thiamine and coffee need to be taken an hour or two apart.

Alcohol is going to contribute to further damage of the intestines and cause vitamin malabsorption, thiamine and niacin especially.  Tryptophan, a form of niacin, helps immensely because it helps heal the intestines and is needed to make Serotonin, that feel good neurotransmitter. Tryptophan is very relaxing, so much so that I take it before bed time along with magnesium Threonate and don't have a problem with insomnia.  You might try taking your Benfotiamine in the morning and throughout day, but not in the evenings.  Since the B vitamins are involved in energy production, the Benfotiamine could be contributing to the insomnia.  I've kept myself awake taking thiamine too close to bedtime.  Tryptophan and magnesium at bedtime.  Passion flower tea or extract is helpful for falling asleep without any side effects, no groggy feeling the next day.  

Are you taking Vitamin D?  Vertigo can happen with Vitamin D deficiency or thiamine deficiency.  Thiamine is needed to activate Vitamin D.  Vitamin D levels should be in the eighties to get the most benefit. 

I hope this helps.  Let me know if you have more questions.  Best wishes for you!

Hello Knitty Kitty, many thanks for your very detailed response.  I'm planning to try your recommendation of L-threonate and TTFD, along with the Triptophan.  However, my normal supplement supplier does not have TTFD and they suggest using B Complex instead.  Is this a satisfactory substitute, in your opinion?

Thanks again! 

[knitty kitty]

You're very welcome, @Sarah Grace,

You do need a B Complex, but the TTFD is not the same at all.  B Complex usually contains Thiamine Hydrochloride (good) or Thiamine Mononitrate (bad) and the other seven essential B vitamins.   

Don't get vitamins containing Thiamine Mononitrate.  This is used because it has a long shelf-life (it won't break down and become inactive sitting on a store shelf).  But that same non-reactivity occurs in the body, so Thiamine Mononitrate is not absorbed well and is difficult to utilize since it's so non-reactive.  Only thirty percent of Thiamine Mononitrate is absorbed.

TTFD is a form of thiamine that was first found in garlic.  It has a fatty tail attached which allows it to enter cells very easily.  Benfotiamine has a fatty tail and gets easy access, too.  Thiamine Hydrochloride needs passive diffusion to enter cells (high concentrations outside of cells moving to areas of low concentration inside cells).  TTFD can cross the blood brain barrier by itself.  Benfotiamine and Thiamine HCl need carrier molecules to pass through.  They'll still get through, just takes longer.  Because TTFD gets into the brain so easily, smaller amounts are needed to see results.  

Thiamine Hydrochloride 500 - 2000 mg/day

Benfotiamine 300 - 1800 mg/day

TTFD 50 - 500 mg/day 

Everyone is different, so you have to find what's right for you.  I take some of each every day.

Ask your supplier about Lipothiamine, also TTFD with added lipoic acid (brain likes this).   Thiamax is another TTFD brand name to look for. 

I hope you can find a source!

P.S. for pain, I take B12 Cobalamine , B 6 Pyridoxine, and Thiamine (TTFD)  All together these three vitamins have an analgesic effect.  You can take these as separate pills at the same time.  

Takeda Alinamin EX Plus is the brand name of one tablet with all three in that I really like and rely on.

Edited March 18, 2025 by knitty kitty
Added Post Script

[Sarah Grace]

Dear Kitty

Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.  

It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful. 

In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice.

I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them.

Best regards,

[trents]

My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.

[knitty kitty]

@Sarah Grace, 

Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.   

I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.  

I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)    

This recent study shows tryptophan really helps.

The association between dietary tryptophan intake and migraine

https://pubmed.ncbi.nlm.nih.gov/31254181/

 

For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries.

Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.  

Vitamin D helps, too.  Low Vitamin D is found in migraine.  

I'm so glad you're doing better.  

[trents]

Nuts and cheese are not particularly high in tyrosine compared to many common foods most people eat nearly every day, particularly most meats and fish. I doubt that is the issue in and of itself, though nuts and cheese (particularly aged cheeses) can be a trigger for some migraine suffers for whatever reason. https://www.myfooddata.com/articles/high-tyrosine-foods.php

Edited November 11, 2025 by trents

[knitty kitty]

Some people have difficulty processing tyrosine.  Cut out the nuts and cheese and see if there's any difference.  Everyone is different.

This study shows that tyrosine can affect our brain with detrimental effects as we age.

Neuro-Cognitive Effects of Acute Tyrosine Administration on Reactive and Proactive Response Inhibition in Healthy Older Adults

https://pmc.ncbi.nlm.nih.gov/articles/PMC6084775/

"In conclusion, we show age-related effects of tyrosine administration especially on proactive, not reactive, response inhibition, accompanied by signal changes in dopamine-rich fronto-striatal brain regions. Specifically, we observed that tyrosine’s effect on brain and cognition became detrimental with increasing age, questioning the cognitive enhancing potential of tyrosine in healthy aging."

[trents]

Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.