Numbess after Carbs/Sugar

[ChetRoi]

@mahsiyat , if I may offer the suggestion that since you had a B12 deficiency, consider trying a B12 cofactor instead of the off-the-shelf cyanocobalamin. It is further discussed in other posts. Also, you may not be aware that the serum cobalamin blood test is widely seen as inadequate, and the lower end of the reference range is in dispute, missing a segment of B12 deficient folks. Further, there are people like me who have a B12 transport problem where an otherwise adequate amount of B12 in the bloodstream cannot enter the cells leaving a person B12 deficient. A new "transcobalamin" test is of greater accuracy and is under development.

B12 deficiency may well not be a problem for you but using methylcobalamin will help further reduce the possibility.

The B12 cofactor methylcobalamin is also fairly widely available. I have used the sublingual (under the tongue) form. Most folks begin a dosage of 1 mg.

Finally, another thread has more recent information on this topic.
https://www.diabetes.co.uk/forum/threads/undiagnosed-numbness-after-consuming-carbohydrates.140051/

If your medical issues are likely due to consuming carbohydrates, I would encourage you to post more detailed information about your experiences in the abovementioned thread.

 

[DebraS]

Hi @KimVeld,

Welcome to Carb Dysmetabolism 101 where we are pooling clinician experiences and information trying to feel our way toward a diagnosis.

As you have seen, we have been grinding away at this syndrome for a year on this forum; some of us much longer privately. By sharing data about our disease(s), we have gained insight into that which we hope is a single pathology.

The posts on this topic are spread across two threads and difficult to consume in their present form. It may be time, now that several of us have checked in, to establish protocols attempting to define the signs and symptoms plurality of this disease, as well as testing we have undertaken and possibly the results obtained, and finally conjecture of one or more suspect pathologies. I will be making a post on this proposal shortly.

But let's talk about B12. With regard to your questions on it, in my case a B12 deficiency became apparent five years ago when I began a trial of the B12 cofactor known as methylcobalamin (not the commonly sold cyanocobalamin). If a person has a B12 insufficiency or deficiency, supplementation will effect a positive response within hours (often less than a day). That is what happened to me. Further, I noticed beyond the muscle relief, it also resolved patches of distal numbness that had begun to appear on my feet. At that time, I had not yet made the carb-numbness causation connection.

What remains uncertain to me is whether the B12 deficiency is the primary problem secondarily causing the carb intolerance, or whether B12 is malabsorbed secondarily due to some upstream primary carb dysmetabolism.

If you intend to begin a trial of B12, I would suggest a 1 mg sublingual lozenge of methylcobalamin perhaps two hours before you take carbs to learn if a difference from prior postprandial experiences is noticeable.

Please post how it goes and any questions you may have.

--Chetroi

Hi Chetroi. For over 24 years I have had pain from consuming sugars and carb, and I am not diabetic. I had gestational diabetes about 30 years ago while pregnant but other than that, my glucose levels are always around 80. Never checked my insulin levels, but exhausted medical resources. Have always been underweight but crave sweets. Pain started as burning muscle pain in hips and inner thighs, and progressed about 7 years ago to include burning nerve pain in my hands and feet, sometimes within 15 minutes of eating sugars/carbs. If I eat sugars for a few days in a row, my knees, neck, shoulders, and back will get sore as well. I am always in pain, but am able to work/function if I watch my diet. I take a lot of food supplements, including 3-4 TBLS brewers yeast a day and lots of potassium, which helps. Using brewers yeast for B vitamins. If I reduce my potassium, my pain increases dramatically.

 

[ChetRoi]

Hi Chetroi. For over 24 years I have had pain from consuming sugars and carb, and I am not diabetic. I had gestational diabetes about 30 years ago while pregnant but other than that, my glucose levels are always around 80. Never checked my insulin levels, but exhausted medical resources. Have always been underweight but crave sweets. Pain started as burning muscle pain in hips and inner thighs, and progressed about 7 years ago to include burning nerve pain in my hands and feet, sometimes within 15 minutes of eating sugars/carbs. If I eat sugars for a few days in a row, my knees, neck, shoulders, and back will get sore as well. I am always in pain, but am able to work/function if I watch my diet. I take a lot of food supplements, including 3-4 TBLS brewers yeast a day and lots of potassium, which helps. Using brewers yeast for B vitamins. If I reduce my potassium, my pain increases dramatically.

Hi @DebraS,
Had not heard of Brewers Yeast for carb dysmetabolism before. Interesting that it is principally B vitamins, but be aware 3-4 TBLS of BY has about 60-80 carb grams. At my worst time with this syndrome, that would have been more than enough to cause real problems. BYMMV. Read earlier posts for more information on the B12 derivative Methylcobalamin which has significantly slowed my disease and stimulated nerve and muscle recovery (strongly suggesting, in my case, a refractory B12 deficiency).

Some BY also contains Chromium, I understand, which is said to lower fasting blood sugar, lower insulin levels, and help insulin work more effectively.

Currently, I have had moderate success in reducing the numbness and allowing greater carb ingestion by taking 500 mg Berberine about an hour before meals. Berberine efficacy has been demonstrated in clinical trials and was shown to be more effective in some cases than Metformin by improving Lipid panel results as well. Metformin is a popular DM II drug which "helps lower blood glucose levels by improving the way the body handles insulin — namely, by preventing the liver from making excess glucose and by making muscle and fat cells more sensitive to available insulin." (https://www.diabetesselfmanagement.com/diabetes-resources/definitions/metformin/)

Also effective in reducing/eliminating mouth numbness/burning has been Alpha Lipoic Acid (ALA). There are clinical trials showing efficacy of ALA in reducing burning mouth syndrome for some but not all folks. It was completely effective for me at 1,200 mg/day.

I also take potassium (3 @ 99 mg/day) to keep muscle cramps at bay. @DionneT, who has posted in this thread, may have looked more closely at the possible role potassium plays in this syndrome.

One question. Once the pain appears, how long after a strict carb embargo does it take for the pain to resolve?

 

[HowardJ59]

@DionneT, @ender.
Your carb sensitivity symptoms very closely mirror my own that I have experienced for about six years. I discovered early on then that two B12 cofactor vitamins--methylcobalamin and adenosylcobalamin--dramatically improved my numbness, weakness, ataxia, etc. symptoms. It was not until two years ago that I stumbled on the association of carb ingestion to the hypesthesia (mostly skin numbness) that occurred about 2-3 days later. The numbness would last about a week to 10 days and then mostly wane. The reduction in numbness seemed to be related to the B12 I was taking at the time.

Like you, I have had great difficulty finding medical help that has any idea about this pathology. But I have learned a few things along the way. The B12 cofactors mentioned above have kept me out of a wheelchair. They have also greatly improved my mental state, reducing brain fog, confusion, anger, depression, etc. to near normal levels.

Over a year ago, I began a ketogenic diet, keeping my carb intake at about 25 grams/day. avoiding the dysfunctional carbohydrate metabolic pathway. I have gained further relief from some of the symptoms as a result of this diet.

Today, the disease has progressed. I am diagnosed with a severe sensorimotor polyneuropathy with axonal features and denervation. Walking is limited, stair climbing very difficult. The carb dysmetabolism symptoms now ensue just one hour after eating, and the extent and intensity of the numbness is predicted by the glycemic load of the food.

The mouth and tongue numbness (burning mouth syndrome) has been largely relieved by Alpha Lipoic Acid (ALA), shown in clinical trials to help in the treatment of BMS.

I am now pursuing a diabetes expert clinician to focus on diabetes type 1.5--latent autoimmune diabetes in adults. The EMG/NCV test result signature indicates a pathology whose deficits closely match B12 deficiency and diabetic neuropathy.

I would appreciate hearing from either of you about your progress in treatment, if any. Also, any genetic tests you may have had to help diagnosis of this disease would be useful to know about. Thanks.

 

[HowardJ59]

Hi ChetRoi
I am new to the forum. I found this thread by asking about carb intake and numbness in a google search, which is what i seem to be manifesting. Glucose test strips seem to reveal nothing unusual, The GP has tested me for many things but drawn a blank, my blood glucose appears normal. Five years ago I was unwell for about a year and the doc tested me with nothing showing up. Fortunately I met some one who described symptoms similar to my own, lethargy, malaise , brain fog, night sweats and generally feeling ill, he recommended I try a gluten free diet which resolved my health issues immediately.
Five years later here I am with spreading numbness and mostly focused in my hands and feet. Which is exacerbated when I eat carbs and is now spreading up my calves and forearms. I also seem to have difficulty digesting food, just a feeling of discomfort. Interestingly I also have feeling of thickness on the sole of my feet toward the front.
I would be grateful if you could point me to the right person or discipline that might have the appropriate knowledge and experience in diagnosing and managing this condition.
I have tried low carb, ketogenic and just protein diets. I find them helpful but they do not totally resolve the situation and everybody around me thinks I'm crazy, I would really like some physical evidence to justify management by diet and a diagnosis to make management more logical.
I hope you are moving forward with the management of your own condition and thanks once again for posting your thread.
Howard

 

[ChetRoi]

Hi ChetRoi
I am new to the forum. I found this thread by asking about carb intake and numbness in a google search, which is what i seem to be manifesting. Glucose test strips seem to reveal nothing unusual, The GP has tested me for many things but drawn a blank, my blood glucose appears normal. Five years ago I was unwell for about a year and the doc tested me with nothing showing up. Fortunately I met some one who described symptoms similar to my own, lethargy, malaise , brain fog, night sweats and generally feeling ill, he recommended I try a gluten free diet which resolved my health issues immediately.
Five years later here I am with spreading numbness and mostly focused in my hands and feet. Which is exacerbated when I eat carbs and is now spreading up my calves and forearms. I also seem to have difficulty digesting food, just a feeling of discomfort. Interestingly I also have feeling of thickness on the sole of my feet toward the front.
I would be grateful if you could point me to the right person or discipline that might have the appropriate knowledge and experience in diagnosing and managing this condition.
I have tried low carb, ketogenic and just protein diets. I find them helpful but they do not totally resolve the situation and everybody around me thinks I'm crazy, I would really like some physical evidence to justify management by diet and a diagnosis to make management more logical.
I hope you are moving forward with the management of your own condition and thanks once again for posting your thread.
Howard

Hi Howard--
I would recommend you read closely the posts in this thread. I have laid out most of what I have learned about this subclinical disease; and for me, in particular, with regard to the methylcobalamin supplementation and the notorious unreliability of the standard serum cobalamin test.

I have sought out the help of an endocrinologist who wants to dig deep and engage in skull sessions to try different tests and medications. I am also working with a biochemical geneticist who has just ordered a Whole Genome Sequencing.

While I continue to self-manage the disease and wait for a diagnosis, I have found a few things that clearly slow the progression of the disease.
(1) Methylcobalamin in high doses (MB-12, initially sublingual @ 5 mg daily) which, for me, directly reduces (but does not eliminate) the numbness after carb consumption.
(2) Supplements that mediate insulin resistance, such as Berberine (an analog of the DM-prescribed drug Metformin whose efficacy was confirmed by clinical trials), Glutathione, and Alpha Lipoic Acid help. Berberine has helped the most, allowing me to increase my carb intake from about 25 grams/day to more than 150 grams/day.
(3) Eliminating high and even moderate glycemic load foods from the diet. Breads I cannot eat at all--they are the worst.

And perhaps something to investigate--Ehlers-Danlos Syndrome; talk with a rheumatologist familiar with the disease.

Keep us posted, please.

 

[glass_house]

Thank you ChetRoi and everyone for this information. I have this issue and my doctor looks at me like i'm nuts when I tell him that bread and sugar like carbs make my hands and feed go cold and numb. He instead recommended a book for anxiety. And sent me on my way. Allow me to tell my story, I need to tell it to someone and sorry if it's long.
Male: 35, 20 pounds over weight and out of shape.

5 months ago I got ill so to speak. It started gradually with a localized headache that wouldn't go away and got worse over the course of a week. Then extreme fatigue, difficulty even getting out of bed and terrible night sweats. Reoccurring vivid dreams, numbness but also sensitivity to skin and brain zaps. One morning I have breakfast started with a quarter of an apple. I get severe unquenchable thirst, my ears start ringing, my vision gets blurry and I feel like i'm going to pass out. Within 2 minutes it is gone! Huge shocker. I immediately recognize the symptoms as blood sugar problems and change my diet to zero carb. Each time I tried to introduce something with even a tiny amount of carbs I got the same huge blood sugar spike. (I wish I had a meter at the time). I go in to see the doctor within a few days and I tell him this story, hes thinking how crazy I am. "A quarter of an apple wouldn't do that" he says. and "Skinny peoples hands and feet just get colder" he says. I tell him, I couldn't even warm my feet in a hot shower. Now hes really thinking i'm a loony. So the nurse at least tested my A1C and says all normal. Doctor says go home it must be anxiety. I still have slight ringing in my ears and my vision got worse after those events!

Depressed and defeated by my uncaring doctor, I self diagnose myself with some sort of diabetes and begin exercising and eating zero carb. Gradually over a couple weeks my body feels better, I very slowly introduce carbs again. YES my body can tolerate it again, but theres a catch. Anytime I have carbs like bread or sugar my hands and feet get very poor circulation, with tingly cold numbness. It onlys takes 15 minutes for it to start after eating and lasts a couple hours. I can sort of control this by staying on a low carb diet and exercise. The longer I stay on the diet and exercise the more my body builds up a tolerance. If i'm really good for a week or 2 I can have a slice of cake and ice cream and only feel slight tingly sensations. If i'm lazy and start eating carbs again and stop working out my body won't even tolerate a slice of bread. Somewhere after my doctor visit I did buy a meter and started testing, all blood sugars are in normal ranges even when I feel the numbness.

Very depressed about my outlook after i've been dealing with this for 5 months with no signs of it going away and all the worries of, is it type 1.5 diabetes? Is it pancreas cancer? (yes i'm already down that road) Today I couldn't even function just stayed in bed and broke down from the whole mental and emotional exhaustion of worry and trying to be my own doctor and desperation I feel.

Finding this thread at my lowest of lows today was a pleasant surprise and gave me a glimmer of hope. I will immediately begin taking ALA and Methyl B12 and see what happens. Oh yes and i'll try to find a new doctor, but again my symptoms are all too weird for them to take me seriously.

Thanks again and i'll be popping in with periodic updates.

 

[glass_house]

An update for me 2 months later. Berberine has been a god send. I take 500mg before each meal. I can eat carbs again like breads but no sugar or cakes. Even a lot of white bread would be enough to make my feet go numb. But it's nice to almost eat like a normal American once a week. Without Berberine I'd probably be full blown diabetic by now. I do still have pain in my back when I eat fat. A Pancreas issue has not been ruled out. 4 month wait to see a specialist. I've come to terms with any scenario at this point and just enjoy 1 day at a time and so thankful I can live a semi normal life for now because of berberine. I do still need to excercise for best effectiveness. Thanks again. Will update if anything changes or what my specialist says in a few months.

 

[ChetRoi]

Glad to hear Berberine has helped @glass_house.

I don't know that I have mentioned in any earlier post about my tolerance buildup as you have described: "The longer I stay on the diet and exercise the more my body builds up a tolerance." I have the same reaction after staying on the very-low-carb diet for a period of time.

This information should be a worthwhile clue for the clinician to help in a diagnosis.

 

[Nmori]

Sorry to revive an old thread..

I’m really happy to have found this thread. Like others here I have searched for what this problem is and this is the only forum posting I have found so far discussing it. My problem is similar to others here with maybe with a few features not mentioned here.

Unfortunately Ender, the OP of the thread never returned. Has anyone else here ever gotten diagnosed for the problem if you’re still around?

I also get the numbing now in my hands and feet after eating carbs or sugar/fruit/sweet vegetables with additional features not mentioned by anyone else. I’ll describe my problem below from the onset in case it could be of use to anyone as this thread is near the top of Google hits for this problem. At the least, it’s a relief when you hear about others with this or a similar problem.. Like others here my doctor giggled and made faces when I told him my problem / thought I was crazy..

My problem evolved and changed from the onset and is maybe multiple problems. Anyway I will describe it:

It started with the hands - my hands were aching and it wouldn’t go away. I often massaged them. The pain was in both hands (not so much numbing at the time). Also around the same time but a little later started the pain/aching in both my feet. I would also get pain in my knees when climbing the stairs. Then one day I had an episode of severe cramping in my right leg to the point I went to the emergency room. I was on crutches for a few weeks to a month unable to walk on my right leg due to weakness. It would collapse if I put weight on it. It seemed it also had to do with dehydration; the cramping at least. It seemed I had a problem hydrating myself at the time even if I drank water though electrolyte drinks seemed to help more.

Around this same time I developed numbing in both of my feet and right lower leg below the knee. So at this point - I have pain/aching in both my hands, and numbing and pain in both my feet and numbing in my right leg below my knee. In addition to this I would get body pain - between my shoulder blades and lower neck in the back.

The strange part was that it would fluctuate. Some days were not as bad as others. Some days I felt like I could not get out of bed being in pain.

I considered that I had fibromyalgia or arthritis or both. Doctors could not make any determination at the time and I tested negative for rheumatoid arthritis.

Later I noticed that my distal (DIP) joint in my right index finger was permanently bent and a bit swollen looking which I identified as a Heberden Node. After a doctor saw that, he determined I had osteoarthritis. However osteoarthritis (supposedly due to wearing of the joints) did not explain my peripheral neuropathy symptoms or my bodily pains that fluctuate.

I finally noticed that my diet had an effect on my body pains. Also cold weather made things worse.

First thing I tried was an AIP (Autoimmune Protcol) diet considering inflammation to be the problem. It made a huge impact - my condition was improving. I also considered that I may have had celiac disease and AIP diets reduced my grain intake (I say reduced because I still ate some even thought the diet restricts it). I am not the best with restrictive diets and often eat the forbidden foods.

So I am not sure what improved my condition since the AIP diet, like a Keto diet greatly reduces carbs since grains are forbidden. My body pains greatly subsided but not gone. I am now trying a combination Keto/AIP diet with plenty of moments I stray from it allowing myself some rice or bread here and there.

Later I noticed the body pain and neuropathic symptoms would show up even if I ate things within the AIP diet like kabocha squash or plantains or potatoes. This is how I finally determined carbs/sugars were contributing to my neuropathy, body pain and numbing sensations in my hands and feet. Unlike others here I also get what feels like swollen hands though my hands don’t look swollen, and pain/aching in the hands. While worse in the winter, eating carbs and sugar makes it worse during any season. I also experience a cold feeling along with the pain, mostly during sleep from my elbows to my hands, mostly felt in the wrists/lower forearm. It is not my imagination because when you touch them they feel cold.

As far as the numbing in my hands and feet it is triggered by the carbs/sugar intake in addition I may get body pains. The carbs/sugars that can trigger it is a wide range - e.g. a glass of orange juice, plantains, or a sweet vegetable (sweet potato. Kabocha squash).

My reasoning was that the mechanism was inflammation since sugar/blood sugar causes inflammation. Early on when it first started I would get bodily pains also after eating fatty meats especially oven roasted, which also supposedly contributes to inflammation.

Doctors have done blood tests and no one ever told me I had diabetes but it seems I definitely have a problem metabolizing carbs/sugars and sometimes alcohol like a beer. If I had a couple beers or too much carbs/sugar I’d get a dizzy feeling in addition to the numbing in my hands and feet.

Anyway that’s my story.

I will be trying the ALA and the Berberine as suggested by a poster on this thread.

Glad to have made everyones acquaintance and hope all are doing well. Would be great to hear from anyone.

 

[Nmori]

I just wanted to add - I discovered carbs are better tolerated when eaten together with a full meal. The reasoning here is that oils/fat and fiber from vegetables slows your digestion. So bread eaten alone may bother me but not a little bread on a hamburger. Or say rice eaten with a full meal as opposed to eaten by itself. Brown or Genmai rice seems better tolerated than white rice maybe due to the fiber content.

 

[ickihun]

I don't know what to research anymore, so I'm here hoping someone might have a clue.

Several months ago, I was having a lot of problems with numbness/tingling in my hands, feet, and right quad, almost exclusively occurring at night and/or upon waking. If I laid down long enough, something would go numb. They would wake back up when I moved them though, but skip the buzzing stage that usually happens when your limbs fall asleep.

I was under a doctor's care (for a whole host of symptoms...terribly insomnia, gastro, menstual issues among them). I got tested for vit B12 and vit D deficiency. I corrected it, but it didn't help with the numbness/tingling issues, I've also been tested for pre-menopause, diabetes, thyroid issues, polymyositis, Chron's, lupus, etc.) Everything is fine/normal. I'm not even pre-diabetic.

Because of my other symptoms, I suspected that I had celiac/gluten intolerance. I cut gluten from my diet, and after three days, the numbness went away (actually 90% of my symptoms went away). Since the numbness had spread to my face the very last day I felt it (while I was AWAKE) I was ecstatic. Unfortunately or fortunately, I was mostly just eating meat, veg, and fruit those days. The first time I ate a gluten-free product made from corn meal, my hands/feet went numb again. It only happened that one night/morning instead of three. It happened again three times: when I had wild rice, sugar, and bananas.

I cut all grains and sugar from my diet then (except potatoes and all fruit but bananas). The numbness in my hands and feet stopped, all except for two accidents. I tried a vitamin and woke up with numb hands. Turns out the vitamin used polydextrose as a filler (I thought it said NO SUGAR on the label instead of NO ARTIFICIAL SUGAR). I also tried to add normal, white rice back into my diet and had the same numbness problem. Luckily, it didn't linger. None of this numbness happens right after eating though. It happens HOURS AND HOURS later (except with the chocolate bar(sugar)...that time it happened within about 30 minutes or an hour...but I was also laying down).

I've asked several of my doctors if this numbness thing could be a blood sugar problem. They say no, but they've also said a whole lot other boneheaded ****, so my trust in doctors is fading. I've seen two family practice doctors, a PA, a neurologist, and a GI, No one knows anything. No one will help me. I've only gotten this far from internet research and trial and error, and darn it, I need to know what I can safely eat and what I can't.

I've unintentionally dropped from 150 pounds to 116 pounds since July. I'm fading away.

Hi @ender I see in your created post that you don't hv even prediabetes but have numbness problems?
I'm hugely interested in numbness but mine seems to be back related as well as diabetes. One specialist says my back and another says not. Hay ho! Numbness there regardless in fact in my best times of controlling my diabetes. However like every disease more and more gets discovered and more in depth.
Once my back is as good as it can get and strong enough to walk properly I will see what my numbness status is then so I can research mine in full.
Numbness is normally due to the sense receptors being blocked
. So that can be caused by many a thing and anywhere along the nerve line. We are sensitive to old injuries from sports etc affecting our older insides. Tendons, nerves and soft tissues which some can be from formed fat clusters. Myself I have lots of old scaring/adhesions which form and can push on my nerves etc. No matter how careful you be the body takes some form of press or bump over time.
Many of us lose weight or add weight which additionally put pressure on our innards.

 

[BLBare]

I’ve been having similar symptoms. Weirdly enough they started right before I got pregnant. Pregnancy seems to exasperate them. I like many others have an autoimmune disease and have gestational diabetes when pregnant. I’m a fairly healthy person who usually watches my carbs and I work out regularly. I have been getting numb hands, headache, and nausea after eating almost any carbs. My body seems to handle natural foods better then processed as like many have mentioned I can’t eat bread or any sugary things. I increased my salt intake prior to experiencing this because I realized I had not eaten enough in my diet. I was thrilled at first because when I started I realized 1. I didn’t crave most bad things anymore. 2. I didn’t purge on sweets like I previously had and became more aware of the sweetness then I had before. (Example: water started tasting sweet and red apples were disgustingly sweet) pregnancy seemed to push this over the edge and cause the numbness, headaches and sickness. I have tested every time when I get like this and my glucose levels though higher then usual are always in the normal range so it made no sense. I can safely say I haven’t gotten enough potassium or calcium in my diet so I’m wondering if it is some weird electrolyte imbalance or something specifically related to salt or autoimmune disorder of some sort.

 

[ickihun]

My numbness has started with scatica on left side leg and pins and needles in hand and left arm now. On top of right side heavy pain, numbness, weakness and unable to rely on it for walking. Or writing 99% of the time. I'm in a right pickle but having a back operation in late July.
Ironically my hba1c is 47 and my meter is showing very good readings of late. Peculiar really. Since I've forgotten metformin at times and glimepiride. I'm going to see what this week brings. If I can stop them (metformin) then my IBS will thank me. Maybe I won't need insulin on scale in operation then. I don't want any hypos. They like 8s and 9s going into operations, for me. I'll talk to nurses at the right time.
How strange though? My posture changes when on lower carbs. My shape too. Weight is stable but I'd like another 2 stone off. Maybe once I can walk and swim again? I ike cycling too but my bike is rusty like me now. Ha ha

 

[Nmori]

Hi, I would like to give an update on my condition and provide a possible solution for everyone.

As I reduced my carbs and went on a Keto / AIP (Autoimmune Protocol) diet, the numbness I experienced in my hands and feet and lower legs greatly improved, however I became even more sensitive to sugar and carbs. It is now to the point where if I take even a single bite of a banana, or eat half a carrot, I may get numbness in my hand or right foot, along with some pain.

I have found a solution (though many may find extreme) which greatly improved my condition though not without side effects.

I used to have major arthritis symptoms as well - pain in knees when walking, back pains (both upper and lower) and went as far as developing Heberden's nodes on my right hand. This has all been reversed.

I noticed not only sugars, and carbs but starchy or sugar laden vegetables and fruits worsened my condition. That was the part that was throwing me off. I was still eating mangoes and sweet fruit (which I thought was healthy) but was terrible for me.

Whatever it is, the problem has to do with, a) processing/metabolizing sugars/starches/carbs, and b) the very well known items that cause autoimmune problems, were causing me problems - namely grains, and legumes.

I also discovered that many other plants cause people problems. Plants which most people would consider healthy. The video of this person below is an example of this:

Anyways, with nothing left to eat, I only had very few choices left - animals and living organisms, and perhaps green leafy vegetables (vegetables that are non-starchy, non-sugary). However the fact is that all vegetables have sugars and carbohydrates to some extent.

The solution I have found (which while not being cured completely, but greatly improved - almost 85%) is to go on an almost Carnivore diet. I still eat some vegetables limited to - red lettuce, spinach, cabbage, avocados, limited - yellow onion and carrot. I am experimenting with full Carnivore which may improve my symptoms even more. As made apparent in the video example above - plants may contain substances that are toxins, and certainly sugars.

One side effect from my diet is that I have lost a lot of weight. This may sound great for some, but I look way too low fat / skinny. Alarmingly low fat despite eating till I'm full when I eat. I am still learning this diet and you need high fat, so I am working on that. You also have to compensate for all the calories you are not getting from grains and starches. For me it comes out to a significant amount of meat - like 3-4 lbs a day. Perhaps I can lower that with increased fat intake. Your body is working in another mode of living off ketones from fat as opposed to carbs so fat intake has to increase. You also have to take in enough salt and electrolytes on this diet.

I discovered a lot of supermarket meat in my area made me feel unwell so now I get my meats from a small farm. I eat a lot of grassfed beef which is higher in Omega 3, safe fish like sardines and mackerel, chicken, pork. Unlike before, I eat all the fat. Don't drink water right after you eat; wait a while for digestion. But get enough water at other times. Grassfed can be very expensive so I live on cheaper cuts and ground beef.

Anyway hope this helps. Good luck.

 

[ChetRoi]

I see a number of we previous posters who have the carb dysmetabolism problem continue to slog through possible solutions, largely without professional guidance due, presumably, to the apparent rarity of this condition. I want to pass along an update to share what news I have.

First, the unfortunate stuff. I have long had, they tell me, a very slow-growing cancer called Splenic Marginal Zone Non-Hodgkin's Lymphoma. Diagnosed about a year ago, and responding to treatment, it brings me back to a possible explanation I investigated years ago--paraneoplastic syndrome. This is when a cancer perturbs metabolism and introduces side-effects to the body, in my case, the possible dysmetabolism of carbohydrates. But this is only my speculation at this point.

Now the better news. Several years ago, a Whole Genome Sequencing was done to determine if a "bad" gene allele could be responsible for the dysmetabolism. Nothing obvious turned up. But I was subsequently referred to some national experts for help and they agreed to take my case. I will be providing blood tomorrow for two critical tests. One is an RNA analysis: "RNA testing captures the molecular conversations taking place inside cells and provides a real-time snapshot of what is happening at any given moment in a patient blood sample." The second is metabolomics testing: measuring the chemical reactions that are taking place in the body.

These tests and the analysis of the results will take months to complete, assuming no further interference from COVID-19. But these advanced tests will give insight into the dynamic processes that are possibly related to the carb dysmetabolism mechanics. I will post here an explanation of what is learned by this work. Of course, what I present may not apply in your particular case but so far, we have had a dearth of information from professional testing, and this is promising.

So, let me leave it at that for now. I will come back online when results are available.

 

[Ibra1739]

I see a number of we previous posters who have the carb dysmetabolism problem continue to slog through possible solutions, largely without professional guidance due, presumably, to the apparent rarity of this condition. I want to pass along an update to share what news I have.

First, the unfortunate stuff. I have long had, they tell me, a very slow-growing cancer called Splenic Marginal Zone Non-Hodgkin's Lymphoma. Diagnosed about a year ago, and responding to treatment, it brings me back to a possible explanation I investigated years ago--paraneoplastic syndrome. This is when a cancer perturbs metabolism and introduces side-effects to the body, in my case, the possible dysmetabolism of carbohydrates. But this is only my speculation at this point.

Now the better news. Several years ago, a Whole Genome Sequencing was done to determine if a "bad" gene allele could be responsible for the dysmetabolism. Nothing obvious turned up. But I was subsequently referred to some national experts for help and they agreed to take my case. I will be providing blood tomorrow for two critical tests. One is an RNA analysis: "RNA testing captures the molecular conversations taking place inside cells and provides a real-time snapshot of what is happening at any given moment in a patient blood sample." The second is metabolomics testing: measuring the chemical reactions that are taking place in the body.

These tests and the analysis of the results will take months to complete, assuming no further interference from COVID-19. But these advanced tests will give insight into the dynamic processes that are possibly related to the carb dysmetabolism mechanics. I will post here an explanation of what is learned by this work. Of course, what I present may not apply in your particular case but so far, we have had a dearth of information from professional testing, and this is promising.

So, let me leave it at that for now. I will come back online when results are available.

How has your progress been? I suffer from a similar experience. I get instant reactions (in about a minutes or even seconds) such as pain in my muscles and joints, twitching in my muscles, tingling under my feet and some kind of fuzziness on my face whenever I eat anything carbohydrates or sweet or sugary, including banana and bread, which are the worse. I also get very weak and drowsy that sometimes knocks me off for about an hour. Recently, salt gives me same reactions as well. No Dr has been able to diagnose the problem yet. My blood sugars are high, although I am not diabetic but my sugar levels are almost prediabetic. These symptoms started at a time I was diagnosed as prediatic but my sugar have reduced now, although the symptoms worsen. I am desperately looking for help and warmly welcome any information in this regard.

 

[KennyA]

How has your progress been? I suffer from a similar experience. I get instant reactions (in about a minutes or even seconds) such as pain in my muscles and joints, twitching in my muscles, tingling under my feet and some kind of fuzziness on my face whenever I eat anything carbohydrates or sweet or sugary, including banana and bread, which are the worse. I also get very weak and drowsy that sometimes knocks me off for about an hour. Recently, salt gives me same reactions as well. No Dr has been able to diagnose the problem yet. My blood sugars are high, although I am not diabetic but my sugar levels are almost prediabetic. These symptoms started at a time I was diagnosed as prediatic but my sugar have reduced now, although the symptoms worsen. I am desperately looking for help and warmly welcome any information in this regard.

Hi - you're replying to an old post by a forum member who has not been on the forum since 2022. You might not get a reply from the person you've responded to.

 

[Ibra1739]

I have your same problem and have done a lot of research on it. Recently I have also been researching it with ChatGPT. I’ve made a lot of progress but it’s hard not to eat too much carbs and I enjoy a beer here and there. Guiness seems to mess me up.

Your problem might be related to insulin resistance, even while your numbers might not put you into diabetic or even prediabetic territory. Try measuring your fasting glucose after fasting 10-12 hours (including your sleep time). It should be around 85–99 mg/dL. Any higher might indicate some insulin resistance.

ChatGPT seems to think that it’s possible my body might be producing too much insulin to compensate and then blood sugar might temporarily go too low which is what might cause you (us) to knock out after having some carbs. The tingling and numbing might not just be caused by the high blood sugar level alone because I get it with even just a moderate rise, however it’s possible that the spike in blood sugar, even if moderate causes some sort of inflammatory reaction. The inflammatory reaction might also be caused by the insulin released (at a level that overcompensates for the insulin resistance). For me I may also get back pain (in lower back, or between my shoulder blades) along with tingling or numbing in my hands and feet. Also joint pain (knees or elbows). Sometimes I also get tingling or numbing on my face and lips.

What I’ve changed for my diet is that I am mostly carnivore and slightly keto. I avoid - grains (except some organic multi grain bread; very limited like half a slice and sometimes one w fat and meat). Fat and protein slows the digestion of carbs so you may be able to tolerate some with a full meal. Glyphosate in many grains including regular grade wheat (meaning not labeled organic) is an endocrine disrupter among other things and can cause all sorts of problems. So now my perfect diet would be grassfed beef, wild fish or game, non-starchy vegetables. I can’t eat sweet potato or potato unfortunately. Even pumpkin or squash is too much sugar for me. I eat some very limited fruit w my salad - like a slice of apple or orange. Any more and I’ll get some numbing.

Since it may be somewhat related to inflammation, you want to do whatever you can to keep your inflammation down - low carb, low sugary foods, low AGE foods, low histamine and histamine producing foods. Avoid anything that may promote leaky gut. Avoid seed and legume oils (canola, soybean, etc) and instead use fruit oils like olive or avocado. Avoid takeout or eating out (to avoid canola and seed oils). Eat some probiotics (limited). I also limit dairy. Also some things that help metabolize blood sugar may be - Thiamine/Benfothiamine, or B complex, and Berberine.

I also take all my minerals and electrolytes- magnesium, calcium (these two especially you need to supplement usually), potassium all in citrate form. Zinc, boron, iodine.

Anyway that’s my solution and I’m much better now. Beware of supermarket meats that may have been bathed in Peracetic acid. Good luck.

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.

 

[ChetRoi]

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.