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Numbess after Carbs/Sugar

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ender

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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.
 
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To be honest @ender, I can't give you any medical advice on this, just what I would hope you would consider common sense. You've removed gluten and sugar from your diet and found that your symptoms improve. As a result, you've probably found the direct link. I'm also assuming you've been tested for diabetes. Doctors don't know everything, and this looks like one of those occasions.

The issue you have is that you aren't eating enough calories, as by taking the sugars and grains away, you have reduced your energy intake, which is why you are losing weight so rapidly. It's probably worth you going through the Low Carb diet programme on this website http://www.diabetes.co.uk/lowcarb/ to learn about what you need to eat to replace the stuff that causes issues.

Essentially what you will need to do is to eat more fats to increase your calorific intake.

Well done on identifying what was causing you issues. Sorry I can't give you more advice on why it might have happened.
 
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Thanks for taking the time to respond. I don't really expect anyone to know what's wrong. This is something of a hail mary pass on my part.

The weird thing about my weight/diet right now is that I'm actually eating slightly more calories (100-200 calories) and a lot more fat than usual. I'm also a bit less active. I shouldn't be losing.

From age 22-33ish, I kept myself at 130-135. I ate low-ish carb and lifted weights, tracked my macronutrients and gym time. I gain weight easy, so if I indulged a bit too much in treats/carbs, I'd buckle down on my diet and lose the two or three pounds I'd gained. That didn't happen often though. I only slid to 150 because I got injured and got into a living situation where I couldn't cook for myself. I had to eat what most people consider "normal" (higher carb and fat, lower protein, higher sugar, more processed...and all horrible for my metabolism).

When I initially started losing, I thought it was because I was cooking for myself again and eating what works for my metabolism (healthy, whole foods mostly, low-ish carb). Then I thought it was perhaps because I was so ill. I've lost weight in the past a few times, and it's slow and requires a LOT of work. I tried the FODMAP diet for a couple of weeks because of IBS type issues, but ate whatever I wanted. Still lost weight. Then I had to go back on gluten for celiac testing. I ate tons of carbs for a couple weeks. Still lost weight (and got even more ill). Then I moved to grain-free, sugar-free for the last four months. My calories have been consistently higher and my fat intake higher than what kept me at my set point for YEARS. If anything I should be slightly gaining or staying the same weight, not losing (and not at this rate). My body is acting like I'm at a 400-500 calorie deficit per day. I'm about to add another meal/snack into my daily intake in an effort to address this because I refuse to be 36 years old and under 115 pounds at my height, Unfortunately, I'm not sure if I can handle more calories. I've never been a big eater, and I never had to be before.

ETA: I just saw your edit about testing for diabetes. The tested me during my first round of blood work (my fasting blood sugar level, I think?). It was normal. I've since had bloodwork done while non-fasting a couple more times and no one's been concerned about the levels then either.
 
Hi the numbness sounds really horrible It is good that through your tests they have found that you don't have diabetes or are even prediabetic so at least you don't have that to add to your problems. I wonder have you ever been tested for allergies I know that can be a long drawn out process involving a lot of skin tests and so on. I hope you get some answers from your doctors soon
 
Yeah, it totally sucks! The really annoying thing is that I've seen dozens of instances online where people have asked about this exact same problem on forums/health advice sites, so I know I'm not unique in my situation. However, the posters never come back to explain if they ever found out the root cause of their problem. One thought it might be a "blood sugar thing," which is why I came here. My brother has diabetes, so I wondered if perhaps this problem might be somewhere on the spectrum.

I saw an allergist several months ago. He said didn't think I was having an allergic reaction to anything (just intolerances), and according to him the tests aren't very good/reliable for that.
 
Hi @ender
I realise this is a really old post but I'm wondering if you ever found an answer to your numbness? I've been experiencing the same thing for over a year now... eating carbs makes me numb, starting from right hand and foot, and this moves up my body to chest and face. This happens quickly if I eat simple sugars, or more slowly if more complex carbs. My blood sugar numbers are nothing out if the ordinary but I have never had insulin levels tested and wonder if this could be playing a role. I eat a very low carb ketogenic diet now which has massively helped with numbness, fatigue and muscle pains but I have the odd slip up and go numb again
Would love to hear what happened next for you!
 
@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.
 
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I get your numbness but mine is assumed from back. As on and off.
 


Hi @ChetRoi - You have posted on a very old thread which was dormant for over a year, prior to @DionneT posting a week ago.

You might find you get more responses if you have a thread of your own. If you would like me to move your initial post to create a thread, then let me, or any of the other Mods know and it'll be done.

As an aside, your status suggests you are a researcher? What are you researching?
 

Hi DCUKMod, good to make your acquaintance.

Yes, I'm aware of the age of the thread. I'd like my post to be where @DionneT, @ender will be most likely to see it.

I'm a retired scientist. In the absence of medical folks who understand my disease, I have been researching my own pathology for going on five years now. My work is informal but has been useful enough to justify medication selection for some of my clinicians and also suggest some of the diagnostic testing I've had, to include whole exome sequencing.

While the progression of my disease continues, I have learned enough to slow it down considerably while I continue working with physicians, mostly endocrinology folks, some of whom are biochemical geneticists, in an effort to understand the disease.

The reference by the two earlier posters to numbness as a result of carbohydrate consumption is the first reference I have encountered noting those symptoms in people who do not appear to have a diabetes diagnosis; thus, my interest.

However, I believe I will take your suggestion by implication and post a new thread to provide more detail on the undiagnosed disease I have to learn of any commonality of symptoms with your larger community.

Thanks for the connection.
 

Hi @ChetRoi,

Thankyou so much for your reply.
I strongly suspect that my issues are autoimmune in nature- I have many of the features of Sjogrens syndrome (as yet undiagnosed), as do several family members on my father's side, although I am the only one with neuropathy and carb metabolism problems so far. I also have a history of epilepsy which may be relevant, although have been seizure-free for ~6 years. I was hospitalised last winter during a particularly bad flare up of neuropathy/extreme fatigue (this happened after a run of viral infections)-multiple sclerosis was ruled out, Guillain-Barre was suspected but also ruled out, things then settled down and I have had a year or so of seeing GPs who find me interesting but don't really know what to do with me! So it has been up to me to get this far.

I finally have a rheumatology appointment in a couple of weeks to investigate my suspicions of Sjogrens, and plan to pursue an endocrinology referral too, I will most certainly keep you updated with any progress. I will also look into ALA for burning mouth, thankyou for the recommendation!

I have tried a variety of supplements; methylcobalamin, ubiquinol, acetyl-L-carnitine, Niacinamide and magnesium and only noticed a very small improvement, whilst the ketogenic diet changed my health dramatically in around 3 days. I am fit and active again, and the brain fog lifted quickly. However I still have bad days despite the diet. I am in my early 30's, and worry about the likelihood of this being progressive.

Like yourself I am a scientist, although I specialise in the plant immune system not the human one unfortunately! Medical research papers have been a great comfort this past year, it has been a fascinating learning curve.

May I ask if your exome sequencing revealed anything? And if any diagnostic tests you have had up to this point have been particularly helpful?

I would also be very interested to know about the onset of your symptoms- were you in full health until 6 years ago? Or were there clues beforehand that something was wrong?

Thankyou again for your post, I wish you all the best and look forward to hearing more.

Dionne
 
Good to hear from you, Dionne.

Sjogrens is a straightforward blood test, although mine came back negative for both subtypes.

With regard to the ALA supplementation, I found 600 mg gave partial relief and 1200 mg gave nearly complete relief. For me, the Sjogrens only appeared when I violated my dietary carb restriction. The data on ALA helping BMS is solid. IMO, take care though not to exceed the recommended maximum of 1200 mg/day (600 mg bid).

Veteran's Affairs popped for the Whole Exome Sequencing (WES) fee (GeneDx) and, given the enumerated clinical phenotype that the gene analyst uses, nothing genetically abnormal was revealed. I took issue with the biochemical geneticist's (my doctor, for this procedure) decision to not include any mention of carbohydrate dysmetabolism in the syndrome submitted to GeneDx. Odd since it was my most prominent symptom-underscoring the view that we are ultimately responsible for our own healthcare. But importantly, IMO, the WES is a very worthwhile step, and GeneDx in particular allows a free re-analysis of your genome a year after the first interpretation (the field is moving very rapidly as is its analysis software).

My best guess (at this time) of my condition is that of an adult onset inborn error of metabolism involving an underperforming protein responsible for B12 transport. The numbness pathology in my case may be due to insufficient B12, necessary to metabolize carbs but I have less certainty here. From my monthly write up for clinicians:
"
A Lay Opinion of the Clinical Picture

A slowly progressive systemic dysfunction of uncertain etiology has presented for more than ten years. Suggestive of a chronic and progressive B-12 disturbed transport syndrome, it is acutely exacerbated by ingesting carbohydrates, a macronutrient known to require B-12 for metabolism.

It is associated with the blocked nutrient uptake of at least cobalamin leading to the improper metabolism of glucose, biochemically giving rise to presumed interrupted cellular signaling. This results in an acute distal hypesthesia and over time a severe sensorimotor polyneuropathy with axonal features and denervation.

The array of clinical manifestations includes the characteristic B-12 deficiency triad of neurological, hematological, and psychiatric symptoms; foamy transformed macrophages; apparent connective tissue inelasticity; Alpha-1 Antitrypsin Deficiency (S-variant allele); a 1.3 cm renal mass cryoablated Nov 2016; and numerous other deficits, many consistent with a B-12 malabsorption or dysmetabolism pathology.

As has been reported in the scientific literature, high-dose vitamin B12 can overcome pathway deficits in some patients, perhaps related to the more recent finding that B-12 cofactors Methylcobalamin (MeCbl) or Adenosylcobalamin (AdoCbl) may have a significant stabilizing effect on the MMACHC (cobalamin C) protein. In this patient’s case, repletion and ongoing titration with MeCbl and AdoCbl, and B-9 Methylfolate (MeFolate) in therapeutic doses begun in 2014 initially resulted in dramatic biochemical and clinical improvement.
....
"

As you can see, my belief locus is B12 deficiency but given my recent EMG/NCV result I am going to be tested for DM1.5. I included more detail of my health summary so you could appreciate my case is multifaceted.

With regard to the numbness, I began to see it more than five years ago, starting with spots on my feet. Some of the B12 symptoms such as proprioception errors and absent deep tendon reflexes have been with me since toddlerhood and young adulthood, respectively.

I will post further results from tests, particularly as the DM1.5-knowledgeable physicians consider autoimmune possibilities. Also, happy to answer questions you may have (or offer peer commissuration, as well), and great to make your acquaintance.

ChetRoi
 
Hi ChetRoi,
Unfortunately still no explanation from my side, I wanted to check in and see if you are any further forward with diagnosis?
Rheumatology were unable to find any abnormalities, no autoantibodies detected. I was feeling relatively well at the time of blood sampling so possibly levels were below detection, or maybe my issues are not autoimmune. I am still waiting for a follow up appointment to discuss these results with the consultant, the waiting times are frustratingly long.
I came across some reading on hypokalaemic paralysis, carb intake leading to lower serum potassium and causing cell polarity abnormalities in those with mutations in ion channels... most of the literature describes motor symptoms rather than sensory but the time frame would fit, my most severe symptoms often begin within an hour of carb excess and normalise within hours/days, with an underlying fluctuation in fatigue, brain fog and pain that can sometimes occur regardless of whether I have eaten carbs or not. Exercise just after eating carbohydrate seems to improve my outcome (an experimental chocolate cake followed by a 5k run resulted in no flare up of numbness!) This might potentially be due to release of potassium from muscle cells during activity so normalising blood levels, although it doesn't always work and is not very practical! My chest can feel quite tight during a flare up, with palpitations/increased resting heart rate so exercise doesn't always feel safe.
A known channelopathy would have been picked up in your sequencing so this is maybe irrelevant, but I am struggling with the lack of a diagnosis and trying to find a new path to chase
Have you had any tests done both pre- and post-carb at any point?
I hope you are keeping well,
Dionne
 


Hi, I was wondering if I could ask you about this. I have this numbness in my face after eating candy but I assumed maybe its histamine or something but its after I eat high carb or candy. My b12 is at 435 and I am vegan and I never supplement
 
Hi @nixynerd, sorry to hear this is your problem although I am glad to hear of another case of apparent carb dysmetabolism.

I am not a student of medicine so I can advise only what has worked for me. I had symptoms of sjogren's syndrome with a burning anterior tongue and lips. At least one research paper I read discussed a clinical trial which showed Alpha Lipoic Acid (ALA) could be an effective treatment for sjogren's. In running a trial, I found 600 mg of ALA gave partial relief and 1200 mg gave nearly complete relief. Further, the Sjogren's symptoms only appeared when I violated my dietary carb restriction.

Also, there is fairly wide opinion that the standard cobalamin test is inadequate (a new test has been in development) and that the reference range can be consequently misleading in some cases. Since you are vegan, I would run two tests similar to the tests I ran: First, I would supplement with ALA at 600 mg. It's efficacy (or not) will show within a day or so. Second, I would stop the ALA supplementation, wait a few days, and begin a trial of 1 mg of methylcobalamin sublingual. Again, effectiveness will show within a couple of days.

If the methylcobalamin works for you by reducing or eliminating the facial numbness, it may suggest a B-12 deficiency. You should then work with your primary care physician or an endocrinologist to understand why.

I would be interested in hearing the results.

Chetroi
 

Hi,

Purely anecdotal. Been reading your thread & been deliberating regarding a comment.

Back in the early 1980s I had this issue after eating potato & as an acompanment for me as a young T1 in the teens Diet Coke..
Sunday lunch syndrome mainly... (I called it. "Neuropathy" was not on my "list" back then, & I don't have it now.)

I used to get numbness (spangly tingling.) in my legs... Thighs mainly & also my lips & mouth.. (No I wasn't low.)
We had cats at the time.. & I associated it with a possible cat allergy?? The cat had been resting on my lap..
It certainly only happened relaxed on a Sunday afternoon, after a traditional family "roast."
I've never had the anomaly since not having anything to do with cats or combining Diet Coke & spuds on the menu.
Infact I rarely eat potato these days.. (If at all! & D Coke is just a "scoop" on a night out as "designated driver.")

This was 34/5years ago?
 
Am I ever glad to have found this forum! ChetRoi and Dionne T, I have learned more from you than the medical field in the last 5 months.
Here is my story:
I have always struggled with hypoglycaemia (shakes, frantic need for food, vision narrowing, etc), which I control by eating regularly.
In July 2018, after consuming a very large late breakfast (because of hypoglycaemia I previously only ate 2 eggs in the morning or I couldn’t make it to my 10:30 lunch break without shaking), I rapidly got sick. I felt weak, lightheaded, numb...so I went to lay down. Suddenly my right arm was completely dead, I kept losing my vision, strength in my body was gone...it was as if I was shutting down. It all suddenly stopped in the ambulance on the way to the hospital, without anything being administered. Originally they thought it was a TIA, so an MRI of my brain was done—all perfectly fine.
It’s since that attack though that my life has changed. For months we didn’t know what was causing this, but every morning I would make up feeling numb and weak in my trunk, down my arms, a bit down my legs. I would sit up in bed and drink 1 L of water, waiting for it to pass. On top of that, randomly I would get additional episodes. I began to track them and marked the level of numbness I felt between 1-4. During the episodes, I felt that I was on the verge of passing out/vomiting, but never did. I would drink and drink water. I couldn’t focus on anything but drinking water....sometimes up to 1-2L while I waited to snap out of it. Doctors tested everything and very little came back abnormal. Neurology released me though, saying it was an endocrine issue. Aha! We were finally on to something. My doc then tested my insulin/C peptide levels and lo and behold, they were sky high! She suggested I try the keto diet. I was game to try it for 30 days. Within 3 days, I felt normal again for the first time in months. I woke up feeling fine, and didn’t have any episodes. Now I knew this was carb/sugar related. My insulin levels on the diet were back in normal range. After 6 weeks on the diet, I started to play with food. I tried a few Carbs at Christmas time, and woke up horribly sick (back to what I was before). Then I tried to test it further with blood work. I ate a bowl of oatmeal (low glycemic food), and had my insulin levels checked—-high. The next day, I ate two pieces of stone ground whole wheat bread—-high again.
I know for sure what is happening to me is a carb intolerance. I plan to eat a high glycemic food and check again, but am terrified to do so. But I know I need to for reference. I am also waiting to see an endocrinologist who I fear won’t believe me or take me seriously, despite lab work showing high insulin levels. I fear that because everybody thinks it’s the reactive low blood sugar that is making me sick. This is not true. I’m sick while my blood sugar is in normal range (I test it all the time), but my insulin is high. I snap out of being sick with only water, not food.

I feel that this is a cellular/insulin response issue. I’ve been reading about B cells and think this is where the problem lies. I am thankful to be in the range of knowing the problem because months ago we thought and tested brain problems, heart problems, even digestive (colonoscopy) problems.

I would love to hear your thoughts on this! This is the first thing I’ve read in months of google searching that remotely resembles what is going on with me — a carb intolerance.

I am curious how much b-12 to take and if eating carbs with b-12 supplementation is possible.

Thank you!!
 

@Jaylee thanks for that post. Anecdotal is fine and adds another data point to potentially fleshing out a disease syndrome.
 
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
 
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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.
 
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