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 @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.
@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.
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 @ender I see in your created post that you don't hv even prediabetes but have numbness problems?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.
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.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.
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.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 Nmori,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.
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