Hi
@ChetRoi and
@DionneT ! I came across both of your postings today, and was wondering whether you've made further progress in terms of your diagnoses.
I'm a 28-year-old woman with no other health problems (no diabetes or autoimmune disorders), and have struggled with small fibre neuropathy for a year now (still only sensory impairment at this stage, without motor involvement). About 75% of my body is affected. I also have awful fatigue, as well as recurring unexplained tendon/ligament issues despite being mostly inactive (I used to be a runner, but have been unable to exercise much over the last few months, due to these issues).
Like you, I seem to have some kind of difficulty in metabolising carbohydrates, or high GI meals. Ever since the neuropathy started, I would get severe postprandial flare-ups that perfectly correlate with my blood sugar levels. The burning (not numbness) will start increasing about 10 minutes after eating, peak at around an hour, then plateau, and drop off after 1.5 hours or so. Essentially, as soon as insulin kicks in, the symptoms get better. I've basically investigated everything under the sun, and no one can provide me with an explanation (I also had the OGTT done - all normal). Doctors think I'm mad, when I say that eating causes these symptoms.
Like others, I've recently adopted a keto diet, which is the only thing that alleviates my symptoms. I've also cut out all food allergens since Feb 2018 (all grains, dairy, gluten, sugar, soy, corn etc etc) without significant improvement. I feel my best on keto, or when I'm fasting entirely. At the same time, I'm trying to ascertain whether the actual damage is being caused by the carbs/blood sugar spikes, or whether that's simply the damaged nerves momentarily reacting to changes in environment (I.e. sensitivity to BG increases, and not to carbs per se). I've come across a few people who know the cause of their neuropathy (including Hashimoto's disease and chemotherapy), who also say that BG spikes of any sort will exacerbate their symptoms, even though BG isn't causing the damage. So that's worth considering.
What I do know for sure, is that my neuropathy was triggered by a fairly major dietary change. I was very restrictive with my diet for five years (to be fair, it was a moderate eating disorder) and I lost about 12kg. During that time, I was in peak health, and barely even got a cold. I never had any of the above symptoms, and had no nutritional deficiencies. Once I came to my senses and started trying to regain weight rapidly, all of this started, and nothing has been successful in stopping it. Alpha lipoic acid and B12 have a minimal effect.
Current theories are intestinal permeability (aka leaky gut), and I have just had a stool analysis identifying major gut dysbiosis (but not SIBO). The immunologist said that this might be causing lipopolysaccharide toxaemia (look it up). I'm having further tests to verify leaky gut (urine and serum), as well as to check for lipopolysaccharide antibodies, which would confirm this diagnosis. Most conventional practitioners aren't knowledgeable about things like leaky gut, but it's certainly a major cause of 'idiopathic' conditions like these. I'm truly hoping that this is the case with me... I worry that my years of caloric restriction and limited carb ingestion somehow permanently messed up something in my endocrine system.
Please let me know regarding your progress.
Regards,
Jana