Numbess after Carbs/Sugar

[Nmori]

I have some new information that may be helpful to some. My own condition has progressed to the point where I’m now in a wheelchair. My prior polyneuropathy has progressed beyond peripheral nerves.

Although generally speaking, mild in nature, I have the symptoms now of slurring speech, swallowing difficulties, pseudobulbar effects, and now reduced lung function. Perhaps a hint of what’s to come.

But the data I wanted to leave with all of you is a recent discovery that I made. Over the past decade I have added for supplements that I found seemed to help in reducing the intensity of the post carbohydrate consumption numbness. In preparation for a visit with my neurologist, almost on a lark, I used the AI function on Google search. I gave the name of the four supplements I was taking, methylcobalamin, alpha Lipo acid, berberine, and magnesium to the search engine, asking what these four substances had in common. It came back with a single word: glutamate.

Further research enlightened me about the glutamate – GABA neurotransmitter balance in the body. I learned about the phenomenon known as excitotoxicity. This occurs when excessive levels of the neurotransmitter glutamate bind to neurons. As I recall in reading it some months ago, this starts a calcium cascade into the neuron starting a numbness andeventually killing it.

I do recall reading that there is a blood test to determine the glutamate level. Being in the process of changing neurologists, I have not yet had this test myself. But given the symptoms that I have had for the past decade and more with the apparent metabolic pathology of dysfunctional carbohydrate pathway processing, I may have hit on the root cause of my numbness after consuming carbs and the slowly progressive disablingdisease that I have.

Hope this helps.

Can I ask what your age is? And your current diet?

 

[Nmori]

Hi Nmori,

Thank you very much for your response. I was a bit pessimistic to receive a reply considering the thread hasn't been active for some time now. Yes, you are right, our conditions are same. To add more context to mine, after eating anything starch, anything sweet (whether table sugar or sweetener, fruits, honey etc.) or even sweet vegetables like carrots, instantly within a few seconds, I start to experience pain in my leg, thigh and arm muscles and almost every joint especially my toes, knees, elbows and sometimes fingers. I also experience tingling mostly under my feet, but sometimes on other parts of my body. I experience some kind of numbness on my face, uncomfortable feeling. I also suddenly get very fatigued, intensely helplessly drowsy and experience pain in my shoulder blades, backbone, lower neck etc. The intensity of these symptoms depends on the glycaemic index of the food I eat, with table sugar, bread, sweet fruits like banana and rice being the worst. Last year, suddenly, taking salty foods give me same reactions as well.

Exercising the affected areas gives me some relief. Say for example, when I experience the pain in shoulders and backbone and do some push ups, it gets better. Or when I get the pains in my calves and knees and do some squats, it gets better. However, when I get these symptoms, I am usually not in the mood to work out at all but sometimes force myself to. Sometimes even working out doesn't work and I have to take a painkiller.
I have tried taking some Vitamins as I strongly believed it was linked to a Vitamin B1 deficiency when I researched, especially after watching Dr. Bergs videos. So I tried Thiamine and realized it helped delay my reactions from a few seconds to about 10-15 minutes. However, I noticed it introduced new symptoms like heightened pulsating feeling like a heartbeat under my feet and also some kind of formication like insects crawling over my body and the numbness in my face which I used not to have. So I stopped it and the reactions returned to happening immediately after ingestion of these culprit foods. I think the Vitamins I had probably had some ingredients that caused the new symptoms. I notice similar symptoms when I take even Vitamin B which makes me believe some of these Vitamins have ingredients that are probably culprits as well (like polydextrose, bulking agents, etc). Do you know of any Vitamin brands you could recommend which don't have some of these additives?

My blood sugar levels have been erratic for about 5 years now since this problem started. Sometimes blood test show I am prediabetic and other times not, although still the levels show to be high. I would say I have a slim build and only 29 years. Even now on a low carb diet, my blood sugar still shows high. I recently have a mixed meal test for hypoglycemia and was told my blood sugars rose after eating and fell low afterwards but my body regulated it it eventually and didn't continue producing insulin which they would have been worried about. My endocrynologist seemed to be OL after eliminating the concern that my body didn't continue producing insulin when it needed to stop. I still don't fully understand it but the Doctor couldn't explain the instant symptopms/reactions I get after eating these culprit foods.

At this point, I am left all on my own and struggling to work or even just have a normal life.

Surprised to hear your age. For me it started when I was about 48yo and now I am 54yo so I had this for 6 years. I got significantly better after going almost zero carb, combined with API (autoimmune Protocol diet - https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet), not eating supermarket meat (I order my meat from a small farm). When I had more money I would also order wild salmon as well, delivered but I can’t afford that at the moment. I eat the cheaper parts of the grassfed cow - top/bottom roast and chuck. I bought a meat grinder. ‘Beef it’s what’s for dinner’ - every night. I feel like a caveman but unfortunately this is the only solution. It’s VERY expensive. On the upside I continue to fine tune my diet and my condition seems to be better overall but I have bad discipline and almost every day I screw up. I am certain if I had perfect discipline like some other carnivores (or light keto) I’d feel fabulous. I have felt fabulous before when I had the discipline.

A huge improvement was this step believe it or not - cutting out black pepper. Black pepper is a seed. Seeds and It’s oils can cause all sorts of trouble.

I cut out all seed oils including legumes and legume oils - No corn, canola, soy oils. I only use olive oil. Also BTW most olive oil is fake and may contain canola. Currently I use - San Giuliano from Sardinia and butter (vital farms) and nothing else. I suspect a lot of butter is fake too. Again don’t eat take out food - you don’t know what’s in there. It’s guaranteed they use cheap seed oils.

Here’s what I eat: Mostly - Beef (any way you like), Eggs (any way you like), salad (Red lettuce, sliced carrot, sliced red cabbage, sliced green Granny Smith apple) I use a small bowl for the salad because remember it’s carbs; you don’t want to eat too much. On salad - salt, olive oil, rice vinegar (just a little).

Occasionally: Pork chop, chicken, fish, slice of ORGANIC bread (I put organic there because you have to avoid glyphosate which who knows may have started it all). If I eat the bread I try to eat half a slice. I sometimes use ketchup, hot sauce and raw onion and lettuce in my beef burgers. Also tea with lemon no sugar. Remember coffee is a seed.

That’s pretty much everything except occasional beer. If I ate less: fruit (occasional quarter to half orange), less organic toast and did not drink any wine beer or port, I’d be much better. Way better.. but poor discipline.

I used to also eat Doritos and various breads like bagels (non organic standard wheat), pasta (standard wheat) but no more. I have vowed to cut out glyphosate entirely. Remember glyphosate is systemic in the plant’s seeds contained within wheat and various grains. You cannot wash it off.

That’s all I can tell you. I told you everything I know. Good luck.

 

[Nmori]

Ah one more huge thing - I distill my water. I do both carbon filtration and distillation.

Cut out all synthetic chemicals - I only use natural cold processed soap for: skin, hair and doing the dishes.

And don’t forget electrolytes and minerals listed above.

 

[lovinglife]

This thread has been temporarily locked by moderators for a review of some of the posts, moderators thank you for your understanding & patience,

The mod team

Edited to correct a term

 

[lovinglife]

Further research enlightened me about the glutamate – GABA neurotransmitter balance in the body. I learned about the phenomenon known as excitotoxicity. This occurs when excessive levels of the neurotransmitter glutamate bind to neurons. As I recall in reading it some months ago, this starts a calcium cascade into the neuron starting a numbness andeventually killing it.

I do recall reading that there is a blood test to determine the glutamate level. Being in the process of changing neurologists, I have not yet had this test myself. But given the symptoms that I have had for the past decade and more with the apparent metabolic pathology of dysfunctional carbohydrate pathway processing, I may have hit on the root cause of my numbness after consuming carbs and the slowly progressive disablingdisease that I have.

Hope this helps.

Hi @ChetRoi
It sounds like you have a lot to deal with and are proactive in managing your condition, could you provide a link for the above statement so members can check the claims out for themselves, thank you

 

[EllieM]

Just a quick reminder to all that AI generated material can be very unreliable and is not allowed on the DCUK forums, rule B10 of the forum rules https://www.diabetes.co.uk/forum/threads/community-ethos-forum-rules.50278/

Although it's extremely easy to ask AI to give you an answer, we strongly advise that you do your own checking before you assume that it is correct, and this is one of the reasons why material posted needs to be from your own experience or with a reputable internet reference. (rule B13)

This article from the University of Maryland has some interesting examples and explanations about why you should be wary of AI generated answers https://lib.guides.umd.edu/c.php?g=1340355&p=9880574

 

[ChetRoi]

Thank you for that correction calling attention to the rules regarding AI supported research.

https://scholar.google.com/scholar?as_ylo=2024&q=glutamate+excitotoxicity+&hl=en&as_sdt=0,10#d=gs_qabs&t=1745241946699&u=%23p%3DfwJJkV7rwk8J

Here is one example of a recent paper discussing the issue I raised. I think it’s important to recognize that the supplements that I mentioned are understood to have an effect of a glutamate inhibitor—against the excitotoxicity response from high levels of the glutamate neurotransmitter by loading the cell with calcium, thereby causing, eventually, cell death and other downstream pathology.

It’s also interesting to note, as I recall reading some months ago, that high glutamate levels are apparently present with a number of major neurological disorders, such as ALS, MS, Parkinson’s, Alzheimer’s,and others.

How recent the research on supplements like the four NDMA receptor antagonists (glutamate inhibitors) is applied today in the practice of medicine I do not know because it is well outside my expertise.

All I can contribute to this question in your forum is my anecdotal data. I will further mention though that when I brought this to the attention of my neurologist, she invited me to try (off label) the drug Memantine, typically prescribed for moderate to advanced Alzheimer’s patients. It is a known glutamate inhibitor.

Let me further add that I really have no authoritative information on testing for high levels of the neurotransmitter glutamate. I would suggest anyone warning more information on this topic should consult their neurologist.

 

[Nmori]

The following post is to replace information that was deleted by moderators. Information that may be helpful to others trying to solve this problem. It is based on 1) Observations regarding myself, along with glucose readings at the time of the observation. 2) My own research on the Internet. 3) Determinations from my observations + Internet research.

Findings from tests (details below): 1) I have slightly high fasting glucose levels indicating possible insulin resistance/ prediabetes (testing and links below). 2) Despite this my body seems to be reacting well to lowering blood glucose after a large meal (without taking insulin or anything else). 3) However still my body reacts to small spikes in blood sugar at times - even 1/8 of a piece of bagel or few slices of orange resulting symptoms - numbing and tingling on the feet, hands, swollen/stiff feeling on hands. I took measurements as low as 107, 112 (mg/dL) when this happens.

My personal determinations/speculation as to what is happening: The combination of joint pains, back pains (specifically between my shoulder blade and lower back) numbing/tingling - hands, feet, face suggests it’s some sort of inflammatory reaction to the spike in blood sugar. Again, I have had this reaction with even a small piece of bread or 2 slices of an orange.

I decided to do a few tests on myself 1) fasting glucose test at 8hrs, 10 hrs, 12 hrs and also one where I ate a regular meal and checked my glucose levels before the meal and at regular intervals after the meal.

My fasting glucose was about 107 mg/dL after 8hrs, and stayed around the same level after 10 and 12 hours. Some reading were as low as 102 mg/dL. Some suggest a reading above 100 mg/dL might indicate some insulin resistance or prediabetes (https://my.clevelandclinic.org/health/diagnostics/21952-fasting-blood-sugar) (https://www.brevardhealth.org/blog/how-to-tell-if-youre-insulin-resistant/#:~:text=The tests that can determine,70 and 100 mg/dL.).

Despite having this reading, my numbers after having a meal seemed to look Ok - after a large meal w 2 beef patties and almost 2 slices of organic 21 grain bread (which I prob shouldn’t be eating): Right after meal 125-147 mg/dL, 30 min after 97-103 mg/dL, 1hr after 92-98 mg/dL, 2hrs after 95-103 mg/dL.

My personal suspicion is that my body is in an inflammatory state just ready to be triggered. I have had these same set of symptoms even after I ate only a pork chop or eggs and nothing else. This really confused me. Later I realized the commonality of those two foods is that they have a really high omega 6 to omega 3 ratio, basically a high dosage of omega 6 fatty acids.

While I am not sure why my body is in a heightened state of sensitivity here are some ideas that float through my head: chronic high insulin levels due to my insulin resistance increase my inflammatory state (https://jamanetwork.com/journals/ja...lin resistance and,for Alzheimer disease (AD).)

Also I suspect glyphosate possibly contained in (non-organic) Wheat, corn and other grains, which disrupt endocrine functions may have a lot to do with it. Recently I have cut out any possible sources and I feel better.

 

[Peanut234]

Just a quick note to say that Thiamine (B1) levels may be worth checking. It is involved in many processes in the body and affects nerve transmission and myelin, muscle contraction including heart, bladder function and leg function and cause foggy thinking. It can be low in people who don't eat wheat (ie are eating gluten free) who have digestive issues, and as we age. There also appear to be variability in genetics regarding the ability to create the enzymes for absorbing it, processing it, and storing it. It also appears that there are medications that inhibit its related enzymes and can result in a deficiency.
There are some controversy in the appropriate levels regarding deficiency, however some doctors say if in doubt treat because the consequesces of the deficiency can be significant including brain damage. Standard thiamine is water soluble, and stores for some people may be harder to retain, however there is a fat soluble form called benfotamine. Because benfotamine is fat soluble it is possible to overdose so follow professionals advice regarding dosages.

 

[lovinglife]

Just a quick note to say that Thiamine (B1) levels may be worth checking. It is involved in many processes in the body and affects nerve transmission and myelin, muscle contraction including heart, bladder function and leg function and cause foggy thinking. It can be low in people who don't eat wheat (ie are eating gluten free) who have digestive issues, and as we age. There also appear to be variability in genetics regarding the ability to create the enzymes for absorbing it, processing it, and storing it. It also appears that there are medications that inhibit its related enzymes and can result in a deficiency.
There are some controversy in the appropriate levels regarding deficiency, however some doctors say if in doubt treat because the consequesces of the deficiency can be significant including brain damage. Standard thiamine is water soluble, and stores for some people may be harder to retain, however there is a fat soluble form called benfotamine. Because benfotamine is fat soluble it is possible to overdose so follow professionals advice regarding dosages.

I take B12 with Thiamine supplements amongst others, this is interesting, can you post a link to this information so other members can check it out for themselves, thanks

 

[Ibra1739]

I have some new information that may be helpful to some. My own condition has progressed to the point where I’m now in a wheelchair. My prior polyneuropathy has progressed beyond peripheral nerves.

Although generally speaking, mild in nature, I have the symptoms now of slurring speech, swallowing difficulties, pseudobulbar effects, and now reduced lung function. Perhaps a hint of what’s to come.

But the data I wanted to leave with all of you is a recent discovery that I made. Over the past decade I have added for supplements that I found seemed to help in reducing the intensity of the post carbohydrate consumption numbness. In preparation for a visit with my neurologist, almost on a lark, I used the AI function on Google search. I gave the name of the four supplements I was taking, methylcobalamin, alpha Lipo acid, berberine, and magnesium to the search engine, asking what these four substances had in common. It came back with a single word: glutamate.

Further research enlightened me about the glutamate – GABA neurotransmitter balance in the body. I learned about the phenomenon known as excitotoxicity. This occurs when excessive levels of the neurotransmitter glutamate bind to neurons. As I recall in reading it some months ago, this starts a calcium cascade into the neuron starting a numbness andeventually killing it.

I do recall reading that there is a blood test to determine the glutamate level. Being in the process of changing neurologists, I have not yet had this test myself. But given the symptoms that I have had for the past decade and more with the apparent metabolic pathology of dysfunctional carbohydrate pathway processing, I may have hit on the root cause of my numbness after consuming carbs and the slowly progressive disablingdisease that I have.

Hope this helps.

Thank you for the update. Over the years, have you been able to receive a definite diagnosis for your condition?

I find it quite frightening at times. I'm only 29 years old and have been dealing with this issue for the past 5 years. Uncertainty about what might happen to me in the coming years adds to my anxiety.

If I could just get a diagnosis, I would know what I'm working towards, and that would provide me with some relief. Right now, I feel very anxious about my situation.

 

[eddye88]

Hi, just found this thread and *think* I'm in the same boat as those of you here, or seems so looking at recent posts by Ibra1739 and Nmori at least.


I had bloods done in February which show my HbA1c as 42 (ie. Pre-diabetic) - however, we were looking at cancers etc. because of a year of back pain, so my GP either didn't notice or didn't tell me at the time.

Blissfully unaware, I continued a heavy in complex carbs diet (+250g/day carbs) until late March when I ate a huge bowl of white pasta and a decent amount of chocolate at a friends and woke up the next day with searing leg pains and a little numbness in my foot.


Since then, I experience instant hot pain and some numbness in my legs (much worse in my right leg) and now also left arm within 10 minutes of almost any carbs. The pain usually lasts a few hours. And this is what led me to finding this thread.


Another fast response symptom I've not seen anyone else here mention but noticed just yesterday, I also get what looks like diabetic dermopathy in response to the carbs - but it left completely with the pain (confirmed visually with my flatmate) and I can't find anything online about that being temporary either - is anyone else experiencing this part?


Lastly, like others posting here, my glucose levels remain good and only rise as expected after eating so I don't understand how any of the above could be possible - I've been over range once for 15 minutes and I think that was my monitor falling off during exercise (removed after).


I'm also 36 years old, very active (30 mins pace walking, 10k overall steps and yoga every day, kettlebell strength training 3x week) with a 22 BMI and I don't smoke/vape and probably average 10 alcoholic beverages a year (3 in 2025).


I've built myself an excel with a load of different carb sources, their glycemic index, their carbs per 100g, their net carbs per 100g and if they have gluten, so intending to work my way through to see if I can find any exceptions that might give me clues as to what's going on.


My GP is so confused that it seems like they borderline don't believe me, they said I absolutely can't have neuropathy with my steady glucose levels and HbA1c of 42 - will be interested to see what they think of the rash at next appointment.



Anyway, it doesn't seem I'm adding anything else to the conversation (beyond maybe a rash), just desperately looking for others suffering similar reactions to carbs whilst maintaining normal glucose levels..

 

[Ibra1739]

@Nmori
I am baffled by my condition. Being as young as I am, I may have to deal with this for the rest of my life. It all started when I was 25 (5 years ago) and has progressively worsened since then. One thing that shocks me is how quickly I begin experiencing symptoms after consuming carbohydrates. The reactions start within seconds of eating. Have you any idea why it's that sudden?

When it started, I was informed that I was close to being pre-diabetic. White rice, white bread, bananas, biscuits, potato chips, and other similar foods were the main culprits. I tried switching to whole grain options, which helped for a while, but soon whole grain rice and bread began to cause the same symptoms. The same goes for fruits—I couldn’t eat most of them because of their fructose content. However, I was able to eat plums, watermelon, and grapes until, eventually, those started to trigger the same reactions. Carrots followed the same pattern. I suspect that my body eventually rejects everything it can tolerate for a while. Currently, I'm now experiencing same reactions with peanut butter snacks that I have been OK eating.

What baffles me further is that two years ago, I began having similar reactions to salt as well. It seems that anything with a taste—sweet or salty—triggers these symptoms, with the exception of bitterness. Recently, even black unsweetened tea has caused similar issues. My body appears to be an extremely sensitive sensor that reacts to a variety of substances, and I’m uncertain about how to manage it.

I thought that certain vitamins or supplements might help, but whenever I try any, they either trigger symptoms or revive old symptoms that had faded away. I wonder if there are some components in these supplements that could be causing the reactions.

Thank you very much for sharing the detailed information about how you are managing this difficult condition. I plan to incorporate some of your strategies. Like you, I feel better when I’m disciplined enough to cut out carbohydrates, but I sometimes lose that discipline. Cooking and shopping for ingredients have never been my strong suits, which often leaves me without food options, as most would trigger my reactions anyway. This frustration sometimes leads me to eat carbs again, as the alternatives seem to offer little relief. Thank you once again for your insights.

 

[Ibra1739]

Just a quick note to say that Thiamine (B1) levels may be worth checking. It is involved in many processes in the body and affects nerve transmission and myelin, muscle contraction including heart, bladder function and leg function and cause foggy thinking. It can be low in people who don't eat wheat (ie are eating gluten free) who have digestive issues, and as we age. There also appear to be variability in genetics regarding the ability to create the enzymes for absorbing it, processing it, and storing it. It also appears that there are medications that inhibit its related enzymes and can result in a deficiency.
There are some controversy in the appropriate levels regarding deficiency, however some doctors say if in doubt treat because the consequesces of the deficiency can be significant including brain damage. Standard thiamine is water soluble, and stores for some people may be harder to retain, however there is a fat soluble form called benfotamine. Because benfotamine is fat soluble it is possible to overdose so follow professionals advice regarding dosages.

What brand of thiamine or benfotiamine do you use? I tried both in the past and noticed that the thiamine delayed my reactions from seconds to about 15 minutes. However, it also introduced new symptoms like a sensation of spiderwebs on my face and insects crawling on my body, heightened pulses, etc. So I stopped as I believed I was experiencing adverse reactions. Perhaps a better brand of B1 would help me. The one I used in the past was from Holland & Barrett in the UK. Your suggestions would be much appreciated. Thank you.

 

[Peanut234]

I take B12 with Thiamine supplements amongst others, this is interesting, can you post a link to this information so other members can check it out for themselves, thanks

Sure

This site has good general information - compared to most

Thiamin

Contents Summary Function Coenzyme function Deficiency Dry beriberi Wet beriberi Cerebral beriberi Gastrointestinal beriberi Causes The RDA Disease Prevention Cataracts Di

lpi.oregonstate.edu

Wikipedia is also quite good

This is the link about prescription medication affecting B1 absorbtion and useage. It does this through inhibition of the SLC19A3 gene which is the main thiamine transporter gene https://pubmed.ncbi.nlm.nih.gov/31764942/

These links will not cover all of the above as I have been researching for some time to figure out my own situation, and has been gleaned from various research papers etc. Give me a yell if there is anything specific you are interested in and I can try and find the original source info.

NB if you research thiamine deficiency, you will come across wet and dry beri beri. Obviously quite old terms. The newer understanding is that when these were defined, it was likely that people has other concurrent deficiencies or ailments, and that now, a person that is deficient in B1 can have any of the symptoms from either of them.

The 'if in doubt treat' comes from various hospital policy/procedure documents that I have come across online.

 

[Peanut234]

What brand of thiamine or benfotiamine do you use? I tried both in the past and noticed that the thiamine delayed my reactions from seconds to about 15 minutes. However, it also introduced new symptoms like a sensation of spiderwebs on my face and insects crawling on my body, heightened pulses, etc. So I stopped as I believed I was experiencing adverse reactions. Perhaps a better brand of B1 would help me. The one I used in the past was from Holland & Barrett in the UK. Your suggestions would be much appreciated. Thank you.

The thiamine is just a generic available from our health system in my country. nothing special.
The benfotamine is doctors best brand, 300mg. It is the only one I could get hold of. - can cause bad acid reflux or indigestion though!

The symptoms you are experiencing are potentially not unusual. Though obviously worth talking to a doctor about.
I lose most ( not quite all) feeling in parts of my face, nose etc when my b1 is low and some of my facial muscles don't work as well, (eg my smile), but when I take a large dose to correct it, i get a tingly itchy nose, and then face. For me it is a sign that things are coming back online. It does resolve after a few hours.

Also my heart rate and blood pressure do change when I have b1 on board and when I am low. My hands and feet are white and my circulation is not good when I am low.
B1 and its deficiency definitely affects the cardiovascular system as well. Have a look online at 'wet beri beri.'
B1 is used in muscle contraction - and the heart is a muscle. after a top up My feet and hands pink up, so I assume that my circulation has improves. This may explain your symptoms, but again - best to discuss with a doctor. Although good luck finding one who understands B1!
Hope this helps!

 

[Nmori]

@Nmori
I am baffled by my condition. Being as young as I am, I may have to deal with this for the rest of my life. It all started when I was 25 (5 years ago) and has progressively worsened since then. One thing that shocks me is how quickly I begin experiencing symptoms after consuming carbohydrates. The reactions start within seconds of eating. Have you any idea why it's that sudden?

When it started, I was informed that I was close to being pre-diabetic. White rice, white bread, bananas, biscuits, potato chips, and other similar foods were the main culprits. I tried switching to whole grain options, which helped for a while, but soon whole grain rice and bread began to cause the same symptoms. The same goes for fruits—I couldn’t eat most of them because of their fructose content. However, I was able to eat plums, watermelon, and grapes until, eventually, those started to trigger the same reactions. Carrots followed the same pattern. I suspect that my body eventually rejects everything it can tolerate for a while. Currently, I'm now experiencing same reactions with peanut butter snacks that I have been OK eating.

What baffles me further is that two years ago, I began having similar reactions to salt as well. It seems that anything with a taste—sweet or salty—triggers these symptoms, with the exception of bitterness. Recently, even black unsweetened tea has caused similar issues. My body appears to be an extremely sensitive sensor that reacts to a variety of substances, and I’m uncertain about how to manage it.

I thought that certain vitamins or supplements might help, but whenever I try any, they either trigger symptoms or revive old symptoms that had faded away. I wonder if there are some components in these supplements that could be causing the reactions.

Thank you very much for sharing the detailed information about how you are managing this difficult condition. I plan to incorporate some of your strategies. Like you, I feel better when I’m disciplined enough to cut out carbohydrates, but I sometimes lose that discipline. Cooking and shopping for ingredients have never been my strong suits, which often leaves me without food options, as most would trigger my reactions anyway. This frustration sometimes leads me to eat carbs again, as the alternatives seem to offer little relief. Thank you once again for your insights.

Hi Ibra,

Your symptoms (everything mentioned except for the salt) I have experienced. Even tea sometimes but more often when I add lemon. I can’t tell you exactly what’s happening, but I can tell you what helps me, sometimes, to the point I have no symptoms if I am careful (my solution in a separate post below), but like you I frequently break my own rules.

A term I discovered is: ‘transient glucose-induced neuroinflammation’. I can’t find too much information on it but what I found referred to the brain, but I wonder whether it can affect nerves in extremities like my feet and hands (and lips/mouth) where I experience symptoms the most.

My own reasoning came to the determination that it’s inflammation in response to certain foods. I can’t tell you the mechanism. I also get very fast reactions especially when I’m sensitive. Sometimes I’m not so sensitive and I can eat carbs, sometimes I can’t even eat a little tiny bit. I can get reactions to eating just 2 slices of orange certain days.

Some ideas I considered is that certain foods can give you permeable gut and then particles/matter entering your blood stream can cause immune/autoimmune reactions leading to heightened sensitivity or inflammation.

Anyway I’ll post my personal solution below.

 

[Nmori]

What brand of thiamine or benfotiamine do you use? I tried both in the past and noticed that the thiamine delayed my reactions from seconds to about 15 minutes. However, it also introduced new symptoms like a sensation of spiderwebs on my face and insects crawling on my body, heightened pulses, etc. So I stopped as I believed I was experiencing adverse reactions. Perhaps a better brand of B1 would help me. The one I used in the past was from Holland & Barrett in the UK. Your suggestions would be much appreciated. Thank you.

The brand I use for Benfothaimine, B Complex and Multi is Doctors Best.

 

[Nmori]

So this is a note I wrote to myself today:
“The key to your health - it’s not rocket science: No beer/alcohol, no bread, no grains, no seeds/legumes, no potatoes, no fructose, no sugar, no eggs, no seed oils/no takeout.“

This is my solution after years of having this condition and it is based on self observation.

Additional notes: I try to get all my electrolytes especially Magnesium and Calcium. I use the Citrate forms. I take a multivitamin and make sure I’m getting enough D3 and iodine. I try to be mindful of glyphosate consumption. If I eat bread or wheat, it’s organic. It’s also in most lentils, soy and corn. All vegetables are mostly carbs by dry weight so it has to be limited also.