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Old 01-25-2021, 02:28 PM #31
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I'm realizing more and more being constipation keeps neuropathy going. I've worked on constipation all my life and at 82 and getting older and now dealing with neuropathy from hip replacement surgery and other stuff...cleaning up the diet, eating more bran (oat bran added to soups) and now with the addition of a stool softener when I go to bed, the neuropathy is so much less.

Constipation, Distended stomach, Numbness or tingling and Numbness or tingling: Common Related Medical Conditions

Think about this if neuropathy is stubborn, clean out the colon. Get rid of lots of sugars too, but the stool softener is just what might be needed...
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OA onset at 18, now 81. Fibro onset at 61, Hip Replacement "mess" 72 (nerve damage, IT band damage, shorter leg). Otherwise, pretty good health.

Most important supplement: grape seed extract
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Old 01-26-2021, 02:01 AM #32
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Originally Posted by janieg View Post
Just thought I'd chime in a little on my experience with a 7 1/2 year battle with idiopathic full body neuropathy. While I still don't know the exact underlying cause, I do know that with 100% certainty what goes in my mouth directly affects the severity of my symptoms.

I think there's little doubt at this point that my body is producing histamine in response to whatever it is I eat that it finds offensive now, and isolating the "whatever it is" has been a great challenge, but I've dramatically improved my symptoms avoiding the things I know are involved now.

I've had a full allergy work-up, and the only thing of interest that showed up was a high histamine level in my blood. I don't have any food allergies that resulted in an IgE response.

The fact that my problem is food-related is also why my symptoms worsened during the day, and I always felt best in the morning (and when I fasted).

While I'm still symptomatic, I'm at least relieved that I have some control over the severity of my symptoms.

janie
Hey Janieg ,

I would like to hear more of your story and what foods you feel help you and what foods make things worse for you.
This is a thread about diet and PN after all and your experience and knowledge will be most welcome. Have you tried intermittent fasting?

Atty
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Old 02-03-2021, 06:46 AM #33
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what a great cooincidence. I just ordered the book "how not to die" independently of your post as my cardiologist recommended it. I am also planning to start a plant based diet soon although this will be a big challenge for me.

the study you mentioned sounds promising but I am wondering why the did not make any nerve testing to see whether the improvements could be measured as well. for me that would be a even stronger proof of concept.

Do you have any recommendations where to find good recipes for breakfast, lunch and dinner (books, websites etc) ?
For a plant based diet, just be sure to check the amount of protein you get a day. Most plant-based diets tend to be significantly lacking in protein and regardless of what people say, lentils and beans are not even close to being a replacement for meat in a gram-for-gram comparison.
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Old 02-03-2021, 04:17 PM #34
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Hi CMTMatt, Each to their own, but I have to say that it's absolutely possible to get enough protein eating a plant based diet. At first I was sceptical as well, but once I got into a different mindset with the groceries I was buying and the types of meals I was preparing and making sure I was getting enough variety, it becomes second nature.

An interesting situation happened to me over the past 6 weeks. I'm on a treatment for an illness and need to have extensive blood tests etc. contantly. For the past year I've been on this treatment I have not experienced any problems with my blood tests. Then I decided to add a protein powder to my daily intake. I wanted to see if that would make me feel a little stronger. 3 weeks after adding that protein powder to my diet twice a day my AST and ALT became raised. Having raised LFTs while on this treatment could be extremely dangerous and would mean I would have to stop and that's frankly just not an option right now. In searching PubMed for further information about protein powders I came across other instances where people had become ill from eating added protein even at quite minimal amounts.

Using process of elimination, my oncologist suggested I stop the protein powder and see what happens. So, back to the oncologist last Monday and all my tests were normal. We had a conversation about diet and protein and he said that if a diet is well balanced, there should never be any problem with getting enough protein whether a person is vegetarian like myself or if they're eating plant based only.

I can honestly say that every person I actually know personally who eats no animal protein seems extremely mindful of the extra nutrients they may need i.e. B12, Iron, Calcium, Zinc, and others.

Obviously there are situations when people should not change their diets and it's always a good idea to ask for professional guidance especially if they have certain illnesses. I didn't do that myself and I had no illness at the time I changed my diet. In more recent times I've always made my medical specialists aware.

Added: Main point for me just to clarify is that I was already getting more than enough protein from my vegetarian diet. I should not have added the powder supplement so please be aware.

Last edited by Lara; 02-03-2021 at 06:34 PM. Reason: clarification at end
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Old 02-15-2021, 01:03 AM #35
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Hi Atty,

Sorry for the delay in responding. I thought I had notifications turned on for this thread, but didn't.

I've really, really struggled with figuring what foods are my triggers...and figuring it out by trial and error.. But to answer your intermittent fasting question, I kind of do that by default. I've never been a breakfast person, so not eating for 16 hours isn't hard.

I try to avoid or minimize all of the following:

- overly salty food
- any aged, smoked or processed meat
- leftover meat
- canned food
- non-homecooked food

Basically, I try to eat fresh food (low in histamine) with minimal salt. That's what helps me most, and I have no explanation for why salt may be involved.

One thing that is really abnormal about me that I apparently just got used to is that I will often get congested after I eat something savory. This was huge clue that histamine was at play, but I completely missed it. Of course the ramp of neuro systems followed.

Because histamine is inflammatory, I've been a flaming ball of fire for 7 1/2 years. A sinister side effect of it (I think and hope) is that I've developed inflammatory nodules in my lungs that are growing. I've had a biopsy that came back "non-diagnostic," which means there was no obvious sign of cancer, but it still could be. (My dad died of lung cancer at 42 which is a complicating piece of data.) The thoracic surgeon wanted to go in right away and remove the largest of the nodules so a better pathology could be done on it, but I've begged for another 3 months so I can continue doing everything I can to reduce the inflammation and maybe get the nodules to start decreasing in size. I feel so much better, that I'm hoping that's happening. We'll find out when I have next CT scan.

Needless to say, I'm very motivated to watch what I eat, take ever anti-inflammatory supplement I can think of, exercise religiously (which I hadn't been doing), and also take digestive enzymes before I eat anything because maybe, just maybe, it will help.

All I can do is cross my fingers on that.





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Originally Posted by Atticus View Post
Hey Janieg ,

I would like to hear more of your story and what foods you feel help you and what foods make things worse for you.
This is a thread about diet and PN after all and your experience and knowledge will be most welcome. Have you tried intermittent fasting?

Atty
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Old 02-15-2021, 01:06 AM #36
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Thanks for the heads up on this. I'm moving to more of a plant-based diet and just bought some protein power.

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Added: Main point for me just to clarify is that I was already getting more than enough protein from my vegetarian diet. I should not have added the powder supplement so please be aware.
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Old 02-15-2021, 02:58 AM #37
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Hi janieg,
Looking back I think I was overdosing and my body is in a constant state of inflammation long term now from the immunotherapy I'm on as well. Still doing well off the extra protein on the LFTs so that's all good again now and it was the only thing that changed.

There are so many variables healthwise and so many different types of powders. I was obviously getting way too much on a daily basis for those weeks that I supplemented. You're already in the process of eliminating other foods, so try not to change too many things at once so that you can figure out what's affecting you. If you do end up needing extra protein because you can't get it in your diet, then make sure you get pure products that are plant based and look into any additives that may be in them. Stick to directions.

Added salt is a no no for me as it activates my restless leg syndrome at night (a common thing apparently) and also affects the neuropathy in my feet.

All the best to you with your nodules. I had a mediastinal lymph node that was biopsied and they made several passes to get several samples. It was not in position to be removed easily. ick. Thoracic surgeon said no sign of anything except lymph tissue. Oncologist said it's basically inconclusive as they only have the several passes and not the whole lymph node and as I already had other pos nodes and tumours at the time, it was treated as positive. Go figure. Gone now.

You've got a lot going on. Good luck with sorting out your diet. I'm sure Atticus can help with that. He seems to have a wealth of knowledge regarding plant based dietary needs.
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Old 02-15-2021, 12:37 PM #38
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Quote:
Originally Posted by janieg View Post
Hi Atty,

Sorry for the delay in responding. I thought I had notifications turned on for this thread, but didn't.

I've really, really struggled with figuring what foods are my triggers...and figuring it out by trial and error.. But to answer your intermittent fasting question, I kind of do that by default. I've never been a breakfast person, so not eating for 16 hours isn't hard.

I try to avoid or minimize all of the following:

- overly salty food
- any aged, smoked or processed meat
- leftover meat
- canned food
- non-homecooked food

Basically, I try to eat fresh food (low in histamine) with minimal salt. That's what helps me most, and I have no explanation for why salt may be involved.

One thing that is really abnormal about me that I apparently just got used to is that I will often get congested after I eat something savory. This was huge clue that histamine was at play, but I completely missed it. Of course the ramp of neuro systems followed.

Because histamine is inflammatory, I've been a flaming ball of fire for 7 1/2 years. A sinister side effect of it (I think and hope) is that I've developed inflammatory nodules in my lungs that are growing. I've had a biopsy that came back "non-diagnostic," which means there was no obvious sign of cancer, but it still could be. (My dad died of lung cancer at 42 which is a complicating piece of data.) The thoracic surgeon wanted to go in right away and remove the largest of the nodules so a better pathology could be done on it, but I've begged for another 3 months so I can continue doing everything I can to reduce the inflammation and maybe get the nodules to start decreasing in size. I feel so much better, that I'm hoping that's happening. We'll find out when I have next CT scan.

Needless to say, I'm very motivated to watch what I eat, take ever anti-inflammatory supplement I can think of, exercise religiously (which I hadn't been doing), and also take digestive enzymes before I eat anything because maybe, just maybe, it will help.

All I can do is cross my fingers on that.
I have had lung nodules for 17 years now. after 14 years i had a mediastinal biopsy and it turned out i had sarcoidosis, which had spread all over my chest and abdomen. It turned out that sarcoidosis was also the cause of my peripheral neuropathy, Since you have peripheral neuropathy also make sure your nodule is tested for that,if you do have the biopsy done.

i wouldnt recommend waiting to get the biopsy, it may give you some peace of mind and if it does turn out to be cancer, the sooner you address it the better.
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Old 02-17-2021, 02:57 AM #39
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Originally Posted by janieg View Post
Hi Atty,

Sorry for the delay in responding. I thought I had notifications turned on for this thread, but didn't.

I've really, really struggled with figuring what foods are my triggers...and figuring it out by trial and error.. But to answer your intermittent fasting question, I kind of do that by default. I've never been a breakfast person, so not eating for 16 hours isn't hard.

I try to avoid or minimize all of the following:

- overly salty food
- any aged, smoked or processed meat
- leftover meat
- canned food
- non-homecooked food

Basically, I try to eat fresh food (low in histamine) with minimal salt. That's what helps me most, and I have no explanation for why salt may be involved.

One thing that is really abnormal about me that I apparently just got used to is that I will often get congested after I eat something savory. This was huge clue that histamine was at play, but I completely missed it. Of course the ramp of neuro systems followed.

Because histamine is inflammatory, I've been a flaming ball of fire for 7 1/2 years. A sinister side effect of it (I think and hope) is that I've developed inflammatory nodules in my lungs that are growing. I've had a biopsy that came back "non-diagnostic," which means there was no obvious sign of cancer, but it still could be. (My dad died of lung cancer at 42 which is a complicating piece of data.) The thoracic surgeon wanted to go in right away and remove the largest of the nodules so a better pathology could be done on it, but I've begged for another 3 months so I can continue doing everything I can to reduce the inflammation and maybe get the nodules to start decreasing in size. I feel so much better, that I'm hoping that's happening. We'll find out when I have next CT scan.

Needless to say, I'm very motivated to watch what I eat, take ever anti-inflammatory supplement I can think of, exercise religiously (which I hadn't been doing), and also take digestive enzymes before I eat anything because maybe, just maybe, it will help.

All I can do is cross my fingers on that.
Hey janieg,

Thanks for your reply. I wasn't aware of the link between histamine and PN. I have found the links below online which may be of benefit to you and other readers. But I can't help thinking the advice from echoes long ago is the most important.
Sorry for my ignorance here and the first link below shows the sheer complexity of histamine in the body, but can't anti histamines help you?

https://bpspubs.onlinelibrary.wiley....nerve%20injury.

Antihistamines for Nerve Pain?

Diamine Oxidase (DAO): Benefits, Dosage, and Safety

I wish you well and keep us posted of your progress.

Atty
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