[Aussie99]

I was just wondering if there were other PN'ers that have non diabetic induced PN that was agrivated/flared by sugars and carbs. I know of only one other person on this board who has this. I have autoimmune PN for nearly 10 years that waxed and waned and only recently have been unable to tolerate carbs and sugars because they are causing exacerbation. I have been to a gastro, an allergist, and my GP and they all don't understand it. I have been assured by my tests that I am not pre- diabetic, and also I am in good physical shape.

I had some success on RLipoic acid and for the first 2 weeks I was on it I could eat some carbs without aggrivating my PN. As my body adjusted to it but, the magic affects wore off and carbs were aggrivating it again. I have had 2 fasting Blood glucose tests and they came back at 4.2 and 4.5. I believe you need to be above 5.6 to be considered pre-diabetic/ insulin resistant.

Anyways I was just wondering if there were any others and if so what advice did you receive from your doctor.

[glenntaj]

--by amount of carbs/sugars consumed, and I am not diabetic (although I struggle mightily to keep my sugars and A1c levels at the borders of the pre-diabetic range). Certainly, when my neuropathy started more than 11 years ago--and it was an acute onset--my blood sugars were quite well within the "normal" range.

I actually think that many people DO get exacerbations or flares with high blood sugar levels, even if their neuropathy does not have a blood sugar etiology. The "double crush hypothesis" may be applicable here: once one has an insult to one's nerves, any other insult--metabolic, mechanical, autoimmune--compounds the problem. Wide swings in blood sugar, even if not at the level of diabetes or even pre-diabetes, do not seem to be healthy for nerves (or, indeed, lots of other bodily tissue).

I think the best advice that has been given is to treat our neuropathy as if it is blood sugar related, even if it is not--tight blood sugar control, exercise, a healthy diet, etc., are good for us anyway. This is why many with neuropathy cut down on the simple carbs, often go gluten free, take B12 and lipoic acid, etc. Better to maximize the conditions for healing--or, at least, not add more problems to those already there.

[KnowNothingJon]

Being in the diabetic category this may not be useful, but I feel the impact of extra sugar in my diet just about every single time.

It has been helpful to curb my intake, though there are other factors that cause my flares. Which makes it difficult to pinpoint root causes at times. While I have been successful at times with cataloging my intake vs exacerbations, I have had to scale back my journaling due to time constraints.

Good luck figuring it out!

Jon

[Joano]

I'm also non-diabetic, but have had PN since 2000. Gradually, I've been eliminating the things I used to eat: night shades, gluten, sugar, and now I'm thinking of the Paleo diet. I also have added Methyl B-12 (from 5 mg at first and now a maintenance dose of 2 mg) daily. Going gluten free was a big help, but I need more--maybe grain-free. There are lotions available which contain menthol that will help with the burning. Read MrsD's posts--she offers excellent advice and I think you'll be able to see a difference if you follow her suggestions.

[Healthgirl]

Originally Posted by Aussie99

I was just wondering if there were other PN'ers that have non diabetic induced PN that was agrivated/flared by sugars and carbs. I know of only one other person on this board who has this. I have autoimmune PN for nearly 10 years that waxed and waned and only recently have been unable to tolerate carbs and sugars because they are causing exacerbation. I have been to a gastro, an allergist, and my GP and they all don't understand it. I have been assured by my tests that I am not pre- diabetic, and also I am in good physical shape.

I had some success on RLipoic acid and for the first 2 weeks I was on it I could eat some carbs without aggrivating my PN. As my body adjusted to it but, the magic affects wore off and carbs were aggrivating it again. I have had 2 fasting Blood glucose tests and they came back at 4.2 and 4.5. I believe you need to be above 5.6 to be considered pre-diabetic/ insulin resistant.

Anyways I was just wondering if there were any others and if so what advice did you receive from your doctor.

Hi Aussie
I am convinced that this has something to do with blood sugar. I happen to notice that my pain and symptoms become horrendous when my blood sugar drops. I have always had low blood sugar issues but this neuropathy thing is new for me. I am transitioning to a modified ketogenic diet to see if it helps. I found this info that might to interesting to some of you.

http://jackkruse.com/what-is-peripheral-neuropathy/

[Aussie99]

Originally Posted by glenntaj

--by amount of carbs/sugars consumed, and I am not diabetic (although I struggle mightily to keep my sugars and A1c levels at the borders of the pre-diabetic range). Certainly, when my neuropathy started more than 11 years ago--and it was an acute onset--my blood sugars were quite well within the "normal" range.

I actually think that many people DO get exacerbations or flares with high blood sugar levels, even if their neuropathy does not have a blood sugar etiology. The "double crush hypothesis" may be applicable here: once one has an insult to one's nerves, any other insult--metabolic, mechanical, autoimmune--compounds the problem. Wide swings in blood sugar, even if not at the level of diabetes or even pre-diabetes, do not seem to be healthy for nerves (or, indeed, lots of other bodily tissue).

I think the best advice that has been given is to treat our neuropathy as if it is blood sugar related, even if it is not--tight blood sugar control, exercise, a healthy diet, etc., are good for us anyway. This is why many with neuropathy cut down on the simple carbs, often go gluten free, take B12 and lipoic acid, etc. Better to maximize the conditions for healing--or, at least, not add more problems to those already there.

Spot on with the double crush theory!! Thank you Glen.

[Aussie99]

Originally Posted by Healthgirl

Hi Aussie
I am convinced that this has something to do with blood sugar. I happen to notice that my pain and symptoms become horrendous when my blood sugar drops. I have always had low blood sugar issues but this neuropathy thing is new for me. I am transitioning to a modified ketogenic diet to see if it helps. I found this info that might to interesting to some of you.

http://jackkruse.com/what-is-peripheral-neuropathy/

Hi Healthgirl,
I have read Jack Ruse. It's very interesting isn't it? I have been on a Paleo diet but cheated on Xmas day and still paying for it. I guess it may take a few days to get out of my system.

[Aussie99]

Originally Posted by Joano

I'm also non-diabetic, but have had PN since 2000. Gradually, I've been eliminating the things I used to eat: night shades, gluten, sugar, and now I'm thinking of the Paleo diet. I also have added Methyl B-12 (from 5 mg at first and now a maintenance dose of 2 mg) daily. Going gluten free was a big help, but I need more--maybe grain-free. There are lotions available which contain menthol that will help with the burning. Read MrsD's posts--she offers excellent advice and I think you'll be able to see a difference if you follow her suggestions.

Thank you! I have been on Paleo since October. It was really hard for first 2-3 weeks. Had no energy and went through carb withdrawel. But it's not that bad as I am not the only person who is doing it in my house. I will look into the lotion. I suspect this will have to be an iherb order as I am in Oz and we don't have the variety/brands that are available in America.

[Aussie99]

Originally Posted by KnowNothingJon

Being in the diabetic category this may not be useful, but I feel the impact of extra sugar in my diet just about every single time.

It has been helpful to curb my intake, though there are other factors that cause my flares. Which makes it difficult to pinpoint root causes at times. While I have been successful at times with cataloging my intake vs exacerbations, I have had to scale back my journaling due to time constraints.

Good luck figuring it out!

Jon

Thank you for reply, and I wish you the best of luck with your PN. Glen mentioned the 'double crush' theory and that makes a lot of sense to me. Once the tissue/nerves are injured, they are just more susceptible to further insults even if original insult has been removed/rectified.
I think it's like having a bad back in a way, if you have a bad back seemingly innocent movements or temp changes can aggravate your condition and cause it to flare where 'normal people' feel nothing at all. It seems to be a management issue.

[mrsD]

I believe the reason some people react to sugar negatively is a chemical pathway called the polyol pathway.

http://en.wikipedia.org/wiki/Polyol_pathway

Not all diabetics get this BTW... I recall a science article in the past saying only genetically prone people react to sugar this way.
About 30% of diabetics. Doctors and ads would have you think all diabetics are equal but they do differ.

Type II diabetes has an surplus of insulin also... and high insulin levels, interact with the Cox-2 pathway and favor it, at the expense of the Cox-1 path which is a maintenance path. The Cox-2 path is inflammatory, and inflammation causes pain.
This reaction may be blunted by fish oil. So people who react to sugar with more pain should be on fish oil at least for a while to see if that helps.

People with poor livers, damaged livers by virus infections or alcohol, are not going to make enough glycogen or glucose on a paleo diet. These people will always crave carbs, more than others. Carbs also favor synthesis of serotonin, and as such provide a form of calming, for many. High protein diets are well known for making some people anxious, irritable and hyper.