Food, diet, PN
 

Perhaps adjusting my diet to vegan has made todays events more likely, I am just grateful I have the weekend off and an understanding family.

My wife makes me black bean quinoa "meatballs". My Mom decided to make the recipe, but to jazz it up she added wine to the mix. It played off the mushrooms wonderfully. I also took a four hour napthis afternoon, my symptoms are not top level, but are up.

I gave up even my quarterly (read once every three months) beer I was open to this past January so this was my first brush with alcohol since, though most was likely cooked away.

As I sit here in enough discomfort to not feel worth trying to lie down it feels worth pushing adjusting diet on any who are reading. You may not be diabetic or pn the verge or amiable to anything as drastic as vegan, but cut the carbs, sugars and see how that affects you.

I have to admit the depth of flavor the wine brought was nice. But not so nice as to deal with this back end.

Sorry to hear you're in pain. I hope things improve fast ( : Interesting what you say re diet. I get very confused about this, should I be gluten free, stop all sugars, probiotics, etc?? I feel committed enough if diet could lower pain but am unclear what direction to take. Have some people found a particular way of eating has helped? I have no known cause for my widespread neuropathic pain. Not sure if that complicates it further.

I think it only complicates food choices at the table and market, but everyone is so different. I know sugars and carbs are exacerbators for me, so I limit them.

I'd attempt to clean up your diet as much as possible. I know everyone has variable circumstances, but my feet still have some whinoness as I waken, so it is unlikely that alkeehawl, even in food, is coming on board again soon.

It was pretty tasty, too- played off those mushrooms like a maestro. But taking my symptoms up at all has made any food or product subject to the KNJ review board.

And for now (and likely ever) wines watch has ended.

Jon

Sorry you're suffering!
 

I can't even take Bach Flowers liquid drops without a reaction as they are in a base of alcohol so I totally understand Jon.

In my opinion
 

Not eating pre packaged chemical filled foods, simple sugars and gluten would be a great idea for now. You can still eat fruit that is low in sugar but forget fruit juice. If you take a probiotic and have good results then I wouldn't give it up. I personally prefer Kefir or my home made plain yogurt.

What I did initially with success was an alkalizing diet. After about a month I started to introduce other foods. Now what I do is try to balance each meal. For example, I really love my 1 cup of morning coffee (and yes, I use brown rice syrup which is sugar and half & half) so I will have a vegetable shake (Collards, cucumber, parsley, ginger, lemon, coconut milk and coconut oil) and maybe a hard boiled egg and then I can drink my coffee without a reaction. (Eggs can cause allergy problems for some people.)

I am not vegan. I eat as organic as possible and equally important I choose grass fed, free range products. I never eat low fat foods as the additives to make up for the fat taken out are horrible. I feel fat is extremely important for so many things and body functions but it has to be "good fat." I eat avocado, coconut butter, wild salmon or tuna and my home made full fat yogurt, etc.

I have no dx either. If you want more info just pm me.

I have definitely noticed that using wine or alcohol in cooking will bring on painful symptoms. Had to stop using it also. :mad:

Beer and wine (and dark whiskeys) contain congeners. These are aldehydes and contain other types of chemical alcohols.

The ethanol itself boils off quickly with cooking. This leaves the congeners behind.

Cooking wines have many concentrated congeners which add to its flavoring ability.

http://www.winesandvines.com/templat...&content=74439

If you look up "congeners" in more detail on Google...you can learn more about this. Wine and beer also may contain substantial sulfites, and these are difficult to metabolize for some people.

KnowNothingJon, I'm so sorry you're suffering. I hate that we can't enjoy such simple things, and that the slightest enjoyment does this to us. I know this too well unfortunately. I do hope it passes quickly or relatively quickly.

I thought I'd throw in my view here. Diet is not only important but essential, and not just for SFN, or PN in general, but for all chronic conditions, and even for healthy people. I've seen great results by changing my diet and so have two other people (one with SFN, one with PN) I've met in person in my own city. They asked me what I had done to have so much energy, to stop the progress or slow it down, and so on and so forth. You see, they have seen the state I was in during the summer. Anyway, I told them and they decided to fully follow my diet. Two months later and they already feel drastically different.

The thing is I think everyone is different, sure, that goes without saying: we all have allergies, different capacities with respect to metabolizing different things, etc. But that doesn't mean there isn't a science behind nutrition based on the basic biochemistry of human beings. Simply put, the science is behind a paleo diet, and in fact behind a ketogenic paleo style diet for those with autoimmune issues and generalized inflation. There are reasons why it works so effectively. This is coming from someone who was a vegetarian for 5 years at one point. I may not be able to justify my diet ethically for example, but health wise it's dead on. Carbohydrates, natural sugars, including fructose in fruit, not to mention processed carbs and sugars all damage the body and increase inflammation. The same goes for certain carbs or the proteins in them that behave like grains or glutinous grains: quinoa, amaranth, buckwheat. Egg proteins are also difficult. Dairy is a no zone, for a number of reasons, including the amount of lactose sugar. Finally, meat and fat are essential for health and reducing inflammation. Grass fed, antibiotic and hormone free meat is essential. Animals that roam are best, including and especially game meat. I avoid pork due to ease of contamination, though wild boar would be just fine health wise. Seafood, especially cold water fish like sardine, mackerel, anchovies are absolutely essential given their higher omega 3 content. Coconut fat is wonderful, so it tallow, and even avocado. Seed oils and especially grain or veggie oils are poor sources of fat. Olive is great though, and nuts and seeds is very small amount could be okay. Bone broth is a miracle worker and so nutritious and helpful for reducing inflammation. And if it wasn’t already obvious, veggies should b consumed in massive amounts. I usually avoid high starchy veggies, one reason why pulses are also not permitted on the diet, and beets.

Anyway, given all the pain and general discomfort we go through, I think it’s worth trying anything that may work. Though this seemed counterintuitive to me: eating lots of fat, including saturated, meat, etc. as a healthy choice, it works. Of course, you must have health kidneys for the increased protein intake, though if you don’t, you can focus more on the ketogenic part, reducing the animal protein and increasing the fat. I also get regular blood tests. So far so good; in fact, my lipids and all else is in very good shape, and I’ve been on the diet for 6 months. I’ve also lost 50 lbs. The only downside is that I find it difficult to gain weight, though if you eat lots of calories, say 3-5k, you’ll keep on the weight. If you eat only 2-3k, then you’ll start losing weight very quickly.

Of course, this is very restrictive, so much so that I had to cook my own meal when I had Christmas dinner with my wife’s extended family. They had some amazing and delicious food, so it hit me hard. I couldn’t even have the fish and turkey since they were marinated in alcohol and sugary sauces. And the dessert looked heavenly to my very sweet tooth.

Anyway, there’s lots of research on diets like this, so you can just Google it. The Paleomom’s autoimmune protocol gets close to what I have, but she allows some things that I don’t and vice versa. If I can answer any questions, I’m happy to help. In the end, you have to make the decision that best fits with your life, but I will say that there is indeed a science behind diet, and this diet works. I can’t imagine what state I’d be in, if I hadn’t done this, and I get a glimpse when I break it even slightly (never anything like gluten or alcohol, since mine might have been partially, if not entirely, alcohol or celiac induced) every few months, whether accidentally or because I’m only human and can’t help myself.

I really hope this helps, and a great day to you all.

David I always love reading your input on these boards! Thank you!!

Cliffman :)

Cliffman, you're too kind. Thank you. :) It goes without saying, or should, that I feel the same about so many of you.

I just wish I didn't write so quickly and make so many errors. ;)

I eat as much calorically speaking, as I can a day though it cetainly varies. Volume is an issue as my digestion seems compromised, though I have not had testing to confirm that yet. I do plan on discussing it at my next appointment, which is early 1st quarter 2016.

I get there being a general best practice and I have considered adding animal products back in at some point slowly for many reasons, not the least of which is I can't lose weight forever and not all the weight I've lost is the sort you look to lose.

Adjustments are part of the plan. I don't want erratic quick ones, but nor Titanic do I wish to emulate. I have not noticed flares off of quinoa, but who knows, maybe a quinoa/wine combo is responsible for this continue accentuated burn.

I've not let it stop my day. It altered it. Greatly. But my family has been at this for awhile now.

I only couch the start on a path to dietary change because it is not simple for some to change their diet. I ate the same or near same for three plus years before exacerbation plus stubborness said, "okay how much can I affect?"

And away I went with Obi Wan on some fool mission.

And rambling a tad.

For me and fruit, being diabetic we don't get along too well. Fructose spikes me, a lot. I do allow for a banana a day, though as I like the potassium.

That's definitely worth taking up with your physician. What's the precise problem? Well, regardless, would enzyme treatment help? It helps digest and absorb nutrients. Enzymedica Digest Basic is pretty basic. Just a thought without knowing the precise problem.

Well, you know what I think about the need for animal protein and fat, as long as it's quality. I should have mentioned that organ meats are excellent and essential, though no one should be gorging themselves on it, especially given the amounts of, say, vitamin A in liver. But it's so nutritious. Anyway, what I was going to say that you're completely right about taking it slowly, if you do make the leap. When I went from vegetarian to meat again, I took it very slowly, and I was in my 20s and healthy. It still took some time. Shocking one's system is never a good idea.

As for fructose, more and more studies are showing that it behaves very much like say a beer, and that it is damaging even in healthy individuals. My grandmother was a diabetic and I couldn't communicate to her how rice and fruit were terrible for her. She just couldn't wrap her mind around it: that they would pretty much or ultimately have the same impact on her system as the pastries she would no longer eat, because the doctor told her they weren't good for her. Alas, it took me years to listen about meat and fat, so I can't blame her.

Definitely not an easy task, going from eating the typical NA diet to a healthy one, and taking it slowly is key. I didn't really. I went immediately to no sugar, carbs, fruit, coffee, and it was a miserable week initially, with migraines the likes of which I hadn't even experienced, and I'm a pro. It took two weeks until I felt better. It was a dumb move on my part, but I went at it alone.

Anyway, I'm glad your family is understanding, and that you're keeping on keeping on. My wife is the same, and I'm grateful for that. :)

Last month there was study published which demonstrated that individuals can have completely different glucose responses to the exact same food.

If you look at the blog post (Part I) below, you will see a graph of participants 445 and 644 and their blood glucose responses to both a banana and a cookie; and the responses are totally opposite of each other. This is not what you would expect. I think it just demonstrates that this topic is more complicated than our current understanding of the issue. If glucose control is the root cause of our neuropathy, you might get some mileage from buying a glucose meter and performing n=1 experiments.

Study:

http://www.cell.com/cell/abstract/S0092-8674(15)01481-6

Blog Post Part I:

http://caloriesproper.com/personaliz...mic-responses/

Blog Post Part II:

http://caloriesproper.com/personalized-nutrition-ii/

Here is a 5 minute video summary of the study:

https://youtu.be/Ryc5M3Ciytg

Thank you so much for sharing this. I'll delve more into it later tonight. Very fascinating, and I suppose unsurprising to some extent, if we take into account differences in gut biom. Well, I didn't expect so much variance, or such divergent reactions. Complex indeed. I would love to get my hands on that algorithm/get plugged into it.

The one thing I would say is that these individuals are healthy, no? - I haven't read the posts in full or the study. If so, so assuming so, that would alters things, I think. Perhaps the sick body, the chronically ill, etc. (very crude, I know) reacts differently and how best to avoid AGEs in such individuals is by reducing sugars, carbs, etc. to avoid the problem. So once there's inflammation, the body can't deal well with glucose, so we're among those who didn't have the best response, or something akin to that. Hopefully I'm expressing myself clearly. What do you think?

It goes without saying that in general this complicates things.

Has the doctor told you that your nerve damage is due to being diabetic?

Yes. That was easy to diagnose back when, seems at least partially on point as two EMGs (two years apart by two different source) show large fiber damage.


It feels like there is more to the story as progression rolls on with a killer a1c and tight control, butI could also be "short stick" guy. February we see how much small fiber damage there is. My neurologist feels certain there is some, I do too (wouldn't know what to say the level is other than off putting).

I am certain on few things involving pn but this- had I not made the dietary and exercise changes (which had to adjust down this year) over the past two years between shingles and exacerbations in 2015 I think I would've missed more work than I did if having to make the choice to step away, which almost happened anyway.

So... yes, they told me my nerve damage was diabetic, that I am a picker, I'm a grinner, I'm a lover and I'm a sinner- but I sure don't want to hurt no one. ;)

Ramble on Jon.

Do you have type 1 or 2?
I am just curious because I wonder if something else is going on.
I've always been a lightweight, but sure did enjoy the buzz from my occasional Saturday night glass of wine with my husband. If I drank water in between and paced myself, I could sometimes manage almost 2 glasses.
I started to notice in the summer of 2014 that not only a few sips, but the smell as I was tilting the glass back to drink it would even make me drunk in a terrible way. I literally would be wrecked from 1/4 glass of wine and would have to give it to my husband. I became unable to process alcohol or cope with any type of fumes or chemical smells.
These days I am finding the acetaldehyde/glutathione/liver/microbiota stuff very interesting.

From what I understand, Saccharomyces cerevisiae is what ferments those beverages that so many people can enjoy- but people who have mold allergy/issues cannot.
I am also finding the toxic mold stuff to be slightly convincing.

Type 2, under control for the moment with meformin and diet. I was close to 300 at one point, 6'2. I am running under 220 now. I know I really don't want to go much below 210 if I can help it, so I am considering a diet change, but like junk diets any diet can become a comfort.

I believe my symptoms are lowered if I mind my parameters flares are few.

Amazing!
 

Madisongrrl, Personalized nutrition makes so much sense! I plan on watching more of the videos from the Health Summit.

How would I do that experiment? I understand I would need a glucose meter to see my reaction to sugar probably pre and post meals but is there any more to it? Admittedly, I'm really more right brained. :Thanx:

You might be right, that there could be more to the story.... I think it's very easy for doctors to attribute SFN symptoms to diabetes. Do you have symptoms on your face and trunk too?

I had a friend like that. If he had one drink, he would totally black out. So he rarely ever drank and smoked weed instead. Those were the good old days of college. :) He always called it an alcohol allergy. I'm sure it was some kind of intolerance. I don't think he ever got it figured out.

I'm convinced by the mold stuff too. The more Dr. Shoemaker stuff I've read and all the studies that I pulled off pub med, there is definitely something here.

Have you had you had your C4a level tested? It's way cheaper than the mold test. I think mine was less than 200 dollars through Quest and my insurance covered most of it; so it cost me 4 dollars. I've been told that if your result is sky high, then it would be wise to run the mold test. Mine was higher, but not sky high. I've attached my result.

Well, there are some people on this board that have made themselves experts on this topic because they have performed these experiments. Definitely go back and look at some of Janie's older posts.

Here is a good article that will give you a framework to follow for your glucose experiment:

http://chriskresser.com/how-to-preve...isease-for-16/

You can buy a glucose meter off amazon. There is a smoking deal right now on this one; it's $4.21:

http://www.amazon.com/TRUEResult-Blo...se+starter+kit

You will also have to buy more test strips.

Madisongrrl,

What mold test are you talking about? Is it a specific one? Thinking back about and searching in my past, spurned on by your searches into your own, I now suspect possible environmental exposure, mold to be precise. Before all this started, I recall have mold all over the bathroom in our old house, the pink and black stuff. That it was persistent and just would come back when we'd even use the most powerful chemicals. That's when strange things started happening: I started getting these strange sores on the bottom of my toes that would last weeks to months and would be, well, soar; and my IBS-C became even worse and worse. I'm starting to research all this now, but I'm not at all knowledgeable in the area. It seems that you know your way around it, so if you have a leads for me to follow, I'm appreciate it.

Interesting Healthgirl. I've always been an alcohol light weight but in more recent years a glass of wine would make me feel horrible for at least 2 days. I chalked it up to getting old and quit drinking completely. Even the alcohol base used in Bach Flowers does not agree with me and can trigger burning in my legs.

I was allergic to mold and mildew when I was young but I did not test positive on the skin allergy test a few years ago. I have little confidence in those skin tests anyway. For the past 24 years I had worked in a media center and school filled with mold and mildew. Makes me wonder... I also am extremely sensitive to any type of fumes and chemical smells.

David,

If you want to take a deep dive into mold, here are some resources:

This is Dr. Shoemaker, who is an authority on the topic. You can get all his published papers for free from his website.

http://www.survivingmold.com/about/r...-shoemaker-m-d

Here is an interview with Dr. Shoemaker; there is a lot of info here

http://chriskresser.com/dr-ritchie-s...onse-syndrome/

A good summary:

http://chriskresser.com/5-things-you...-mold-illness/

Some of my older NT posts:

http://neurotalk.psychcentral.com/post1171064-7.html

http://neurotalk.psychcentral.com/post1161318-2.html

http://neurotalk.psychcentral.com/post1161695-8.html

In my last link above, I link to a place called Real Time Labs. This is the laboratory that does the toxic mold testing. This is very different than calling a company to your house to do mold testing - they only test for mold counts and things of that nature.

The test from Real Time Labs is expensive, which is why the cheaper C4a test is ordered first.

I listened to this podcast a few weeks ago. It was the best explanation that I've ever heard as to why people have these type of sensitivities. It's definitely multi-factorial.

http://powerhealthtalk.com/pht-093-m...-it-exists.htm

Thank you for this wealth of information. I'll explore it all. I'll also check out Real Time Labs, which I presume test the individual rather than the home? Well, I'm sure it's all there. Already listening to the interview. Thank you, and so glad to hear (from your other post) that you're starting to get your life back. :)

Road trip to Reno?
 

Maybe some of us could rent a place and get some appointments with Dr Rutherford.... Definitely for now I'm looking into those glutathione infusions (and hope I don't have a chemical sensitivity to it.) I also loved his podcast on neuropathy.

They have a lot of good shows in their library, I need to make some time to download all their neuropathy podcasts since it looks like there are several.

Lyme and inflammation: https://www.youtube.com/watch?v=sA1VVwYNodI

If you find lots of links to podcasts and other sources, putting them in the Subforum above is a good idea, so they are easy to find in the future. Pick a title for the thread that includes the works "links" and podcasts so a search will reveal them easily.

Thanks!

I never have any facial pain, but I have numbness from my nose down often. It doesn't rate compared to the range of other issues and I tend to notice it only when I am either lying down or sitting and "relaxing" or pondering as I was doing now on lunch so I decided to reply.

Trunkwise, well externally no. Internally I feel gastrointestnally it is running rampant. When I went vegan I noticed a nice change in my excretion process, a regulation. Things were more normalized.

It was that way for the better part of the last two years, save the last two months. I have been a lighter eater for quite some time. I abhor a full feeling. It is uncomfortable. My system seems slow. It makes me think of that Bug Bunny cartoon with the big red hairy creature. My system is the red creature on ether. "I'll get you, raaaaabbbbitttttt...."

I do have a pig out every couple of days, which is certainly redefined from what it meant years ago. I understand I need a certain level of intake. There are days I miss the mark for sure. But power loading to catch up seems unwise.

I don't quite know what to make of my situation. We will see what we will out of this biopsy and if my neurologist is unwilling to poke further I think I have a lead on Weill Cornell in NYC. It may be time to take a week off and submit to a battery of tests with some of the heavy hitters.

But I am curious to see how this goes first and whether my local doctor is willing to step further with me.