Terrible Neurological Symptoms

[knitty kitty]

@HectorConvector,

The AutoImmune Protocol diet would really help in pinpointing which foods are problematic and what is upsetting your system.  

The AIP diet includes meat and fish and vegetables.  The AIP diet excludes all grains, corn, rice, eggs, dairy, legumes, beans, nuts, seeds, some fruit, and nightshade vegetables (potatoes, tomatoes, peppers, and eggplant).  Nightshade vegetables contain glycoalkaloids that promote leaky gut syndrome.  Also no caffeine, no coffee, no black tea.

Meat, vegetables, healthy omega three fats for several weeks while your body calms down the inflammation and autoimmune attack.  Then you can add one new food and see how your body reacts.  Keep a food journal.  

Cheese will freeze.  Cutting dairy would really be best right now. 

Increase Omega Three fats.  As salad dressing or on top of foods, not just as a cooking medium.  Heat makes Omega Threes link into nines.  

and...Eat more liver!

[HectorConvector]

56 minutes ago, knitty kitty said:

@HectorConvector,

The AutoImmune Protocol diet would really help in pinpointing which foods are problematic and what is upsetting your system.  

The AIP diet includes meat and fish and vegetables.  The AIP diet excludes all grains, corn, rice, eggs, dairy, legumes, beans, nuts, seeds, some fruit, and nightshade vegetables (potatoes, tomatoes, peppers, and eggplant).  Nightshade vegetables contain glycoalkaloids that promote leaky gut syndrome.  Also no caffeine, no coffee, no black tea.

Meat, vegetables, healthy omega three fats for several weeks while your body calms down the inflammation and autoimmune attack.  Then you can add one new food and see how your body reacts.  Keep a food journal.  

Cheese will freeze.  Cutting dairy would really be best right now. 

Increase Omega Three fats.  As salad dressing or on top of foods, not just as a cooking medium.  Heat makes Omega Threes link into nines.  

and...Eat more liver!

Thanks, I am going to do research on this before I commit to any dramatic changes in my diet, though I'll start by stopping cheese and see how that is for a bit first. My only drink is water and I don't eat nightshade veg so that's already good. Not much else needs to be changed if I try the AIP diet as most of my diet is meat, fish and veg already. 

Another thing I'll mention (based on the possibility of thiamine deficiency that had been mentioned), when I do exercise, the nerve pain I get tends to be particularly intense in the few hours after the exercise. So there's a cause and effect of maybe 1-2 hours after the exercise til worse nerve pain happens. Would it happen that suddenly if it was a thiamine deficiency? I'm still on 400mg a day.

[ravenwoodglass]

On 11/22/2021 at 8:41 AM, HectorConvector said:

I'll look into those things. Haven't tried Epsom salts, could do that, but warm water is a no no for my feet, any kind of warmth makes them burn very violently, taking a shower is difficult because of the same reason. I'll definitely get some magnesium supplements. Starting an elimination diet on 24th November which will include very basic easy to digest things to start with, and supplementation so I'm not missing anything important while I do it. Somethings has to change here as it's been getting worse very fast these last two years. I'll update on what happens.

Is it possible for you to see an allergist who will deal with food intolerances or a nutritionist?  They could help you get a good starting point for an elimination diet that will fulfill your nutritional and provide enough calories. 

This already may have been mentioned but do you know what your B12 level is? The old standard was 200 or so but now they are realizing that those levels need to be 500 or over. It wouldn't hurt to add a sublingual B12. They dissolve in the mouth bypassing a damaged gut. They can help with repair of the nervous system.

One more thought in case it hasn't been mentioned is have you seen a physical therapist or chiropracter to rule out any pinced nerves? 

I do hope you find something that gives you relief soon.

 

[knitty kitty]

15 minutes ago, HectorConvector said:

Another thing I'll mention (based on the possibility of thiamine deficiency that had been mentioned), when I do exercise, the nerve pain I get tends to be particularly intense in the few hours after the exercise. So there's a cause and effect of maybe 1-2 hours after the exercise til worse nerve pain happens. Would it happen that suddenly if it was a thiamine deficiency? I'm still on 400mg a day.

Yes.  Exercise uses a lot of Thiamine to provide energy for all that muscle movement.  When thiamine starts to run short, the body switches from aerobic means of burning energy to an anaerobic means that leaves lactic acid behind.  This lactic acid build up is known as "the burn" as in the catch phrase "feel the burn".  Normally, resting after exercise allows the body time to clear the lactic acid.  Thiamine is needed to clear the lactic acid.  If there's an insufficiency of thiamine, lactic acid build up may take longer to clear, and leave little thiamine for nerve transmission.

Thiamine is needed for nerves to transmit messages.  One of the symptoms of thiamine deficiency is peripheral neuropathy.

Thiamine levels (and severity of symptoms) can fluctuate with how much Thiamine is ingested daily and how much is expended.  Physical labor, emotional stress, illness, all can use lot of thiamine.

In thiamine deficiency, high doses of thiamine are needed to get into cells and get them functioning properly.  Dosages in the reports I've read vary from 300 - 500 mg several times a day.  Some take as much as 1000 - 1500 mg/day for several days.  

In my experience, I did not experience significant improvement in my symptoms until I took 1000 mg.  I took this amount for several weeks.  As my symptoms improved, I was able to reduce the amount of thiamine.  Before trying high dose thiamine,  I had been taking thiamine like in a multivitamin but it wasn't enough.  I did not get improvement until I took 1000 mg.  Then all the bells and whistles started turning back on.  My toes stopped burning, I was not flattened by physical exertion, my elevator went all the way to the top floor.  It was truly amazing.  

 

[HectorConvector]

27 minutes ago, ravenwoodglass said:

Is it possible for you to see an allergist who will deal with food intolerances or a nutritionist?  They could help you get a good starting point for an elimination diet that will fulfill your nutritional and provide enough calories. 

This already may have been mentioned but do you know what your B12 level is? The old standard was 200 or so but now they are realizing that those levels need to be 500 or over. It wouldn't hurt to add a sublingual B12. They dissolve in the mouth bypassing a damaged gut. They can help with repair of the nervous system.

One more thought in case it hasn't been mentioned is have you seen a physical therapist or chiropracter to rule out any pinced nerves? 

I do hope you find something that gives you relief soon.

 

My neurologist is supposed to have referred me to a dietitian but the referral doesn't seem to have taken place yet (things are a bit slow due to the covid pandemic). Dunno my B12 level at this moment but I'm getting a high level from my diet (900% RDA) and 36000% RDA from a B complex supplement. 

I have had lower back issues for some time, so that's actually a possibility, but not seen a chiropractor yet. 

[HectorConvector]

8 minutes ago, knitty kitty said:

Yes.  Exercise uses a lot of Thiamine to provide energy for all that muscle movement.  When thiamine starts to run short, the body switches from aerobic means of burning energy to an anaerobic means that leaves lactic acid behind.  This lactic acid build up is known as "the burn" as in the catch phrase "feel the burn".  Normally, resting after exercise allows the body time to clear the lactic acid.  Thiamine is needed to clear the lactic acid.  If there's an insufficiency of thiamine, lactic acid build up may take longer to clear, and leave little thiamine for nerve transmission.

Thiamine is needed for nerves to transmit messages.  One of the symptoms of thiamine deficiency is peripheral neuropathy.

Thiamine levels (and severity of symptoms) can fluctuate with how much Thiamine is ingested daily and how much is expended.  Physical labor, emotional stress, illness, all can use lot of thiamine.

In thiamine deficiency, high doses of thiamine are needed to get into cells and get them functioning properly.  Dosages in the reports I've read vary from 300 - 500 mg several times a day.  Some take as much as 1000 - 1500 mg/day for several days.  

In my experience, I did not experience significant improvement in my symptoms until I took 1000 mg.  I took this amount for several weeks.  As my symptoms improved, I was able to reduce the amount of thiamine.  Before trying high dose thiamine,  I had been taking thiamine like in a multivitamin but it wasn't enough.  I did not get improvement until I took 1000 mg.  Then all the bells and whistles started turning back on.  My toes stopped burning, I was not flattened by physical exertion, my elevator went all the way to the top floor.  It was truly amazing.  

 

So I get this annoying nerve pain but none of the other symptoms associated with thiamine deficiency which makes me wonder, though I can't rule it out yet. My athletic performance has increased very rapidly since starting to do my exercises (which are running, cycling and weight training) and I tend to have very high energy levels which has always been the case and very strong muscles considering how skinny I am. In my exercises I do go into my anaerobic zone quite a lot (obviously when weight lifting) and when I do hills or high intensity on the bicycle, I generally tolerate it quite well but it's not out of the realm of possibility that its making there be less thiamine after clearing it. I think I'll keep monitoring the symptoms on my current level of 400mg a day to see if they reduce. Seeing as my only symptom is nerve pain and nothing else, I'd think that would take months to recover. I'd had some form of nerve pain since 2009, so this didn't come on quickly, but slowly built up for years. I'd imagine such nerve issues would heal slowly and take a long time to see a difference. Like 6 months- 1 year.

[knitty kitty]

The inability to put on weight is a symptom of thiamine insufficiency.  Interestingly, packing on excess fat can also be a symptom of thiamine insufficiency.  Turning carbohydrates into fat when thiamine is low is the body's way of saving thiamine.  The body burns fat as it's energy source when it's trying to be thrifty with low thiamine levels, too.  

Peripheral neuropathy can be a symptom of low vitamins such as Vitamin C, Niacin B3, B12 (Cobalamine), and Pyridoxine B6.  And also Vitamin E and Omega Threes.  

I had had nerve pain for years as my vitamin deficiencies got worse due to undiagnosed Celiac.  I was told it was diabetic neuropathy.  Once off gluten, on the AIP diet, and supplementing my vitamins, the neuropathy improved.  There was a big improvement at first, and the neuropathy didn't go away overnight, but there was steady improvement afterwards.  

Does your neuropathy worsen when your back pain is bad?  Any connection between them?

 

[HectorConvector]

23 minutes ago, knitty kitty said:

The inability to put on weight is a symptom of thiamine insufficiency.  Interestingly, packing on excess fat can also be a symptom of thiamine insufficiency.  Turning carbohydrates into fat when thiamine is low is the body's way of saving thiamine.  The body burns fat as it's energy source when it's trying to be thrifty with low thiamine levels, too.  

Peripheral neuropathy can be a symptom of low vitamins such as Vitamin C, Niacin B3, B12 (Cobalamine), and Pyridoxine B6.  And also Vitamin E and Omega Threes.  

I had had nerve pain for years as my vitamin deficiencies got worse due to undiagnosed Celiac.  I was told it was diabetic neuropathy.  Once off gluten, on the AIP diet, and supplementing my vitamins, the neuropathy improved.  There was a big improvement at first, and the neuropathy didn't go away overnight, but there was steady improvement afterwards.  

Does your neuropathy worsen when your back pain is bad?  Any connection between them?

 

I was always skinny since a child, so it seems to be genetic and because I have an unusually narrow skeleton/body (my hips are only 10" wide, and doctors even tested me for Marfan syndrome). I can put on weight these days, - but it just exacerbates my nerve pain if I eat more (of anything). I can gain muscle fine, but not really gain fat, which wouldn't really fit with thiamine deficiency. 

For example, compared to when I was 126lbs vs 147lbs; my waist then has gone up just 0.5" whereas my thigh has gone up by 2.5" circumference, as the gain is 100% muscle. My BF% is so low all my muscles are visible through the skin and veins (which I don't really like but there we are). I wondered at one point if I might have lipodystrophy but doctors said it was highly unlikely.

FWIW, I never had nerve pain before I was diagnosed with celiac disease. It only started around the time I was diagnosed and then after I stopped eating gluten, during which time my guts have healed completely according to my endoscopy. Before I was diagnosed, I had severe malabsorption, with yellowy poos and low energy, eating 3000 calories a day to maintain 126lbs. Since eating gluten free I can maintain 147lbs on 2300 calories a day as I no longer have malabsorption issues. I've wondered if my nerve pain could infact be entirely unrelated to diet/food infact. That said no I don't see a clear connection between the back pain and the neuropathy. It's all still a mystery to me. I'm wondering if it could be entirely psychological somehow.

[HectorConvector]

On the back of what I said in my previous post; I think it's worth mentioning again (as it's last somewhere way back in this thread) that my nerve pain issues didn't start to get really bad until my attempts to gain weight, having been underweight most of my adult life. My first serious attempts to gain weight were in 2017-2019, during which time my nerve pain got out of control (and there's no sign of any disease like diabetes with my sugar being low/normal). This was around the time when someone suggested that I may have some form of lipodystrophy. 

[knitty kitty]

Ehlers-Danlos syndrome?

 

[HectorConvector]

1 minute ago, knitty kitty said:

Ehlers-Danlos syndrome?

 

I did look this up recently, in fact. I don't appear to have some of the features (like the joint issues or hypermobility), but it can be looked into. I'm wondering if I should get a DNA genetics test of some kind that could identify mutations as I think the condition I have (whatever it is) could be genetic in some way.

[trents]

35 minutes ago, HectorConvector said:

I did look this up recently, in fact. I don't appear to have some of the features (like the joint issues or hypermobility), but it can be looked into. I'm wondering if I should get a DNA genetics test of some kind that could identify mutations as I think the condition I have (whatever it is) could be genetic in some way.

That wouldn't be a bad idea in my opinion. And I agree with you suspicion that you have some problem not diet-driven.

[Jackie Garrett]

13 hours ago, Scott Adams said:

Do you have some sort of supporting links for this theory? Please include some scientific studies to back up such broad claims.

I did read a long time ago somewhere, about when the body becomes acidic that it takes calcium from the bones to try and balance deficiency, but I know how I have changed my diet to a less acidic more alkaline diet how my body has healed, maybe that needs researching into more.

[Jackie Garrett]

19 hours ago, HectorConvector said:

So I get this annoying nerve pain but none of the other symptoms associated with thiamine deficiency which makes me wonder, though I can't rule it out yet. My athletic performance has increased very rapidly since starting to do my exercises (which are running, cycling and weight training) and I tend to have very high energy levels which has always been the case and very strong muscles considering how skinny I am. In my exercises I do go into my anaerobic zone quite a lot (obviously when weight lifting) and when I do hills or high intensity on the bicycle, I generally tolerate it quite well but it's not out of the realm of possibility that its making there be less thiamine after clearing it. I think I'll keep monitoring the symptoms on my current level of 400mg a day to see if they reduce. Seeing as my only symptom is nerve pain and nothing else, I'd think that would take months to recover. I'd had some form of nerve pain since 2009, so this didn't come on quickly, but slowly built up for years. I'd imagine such nerve issues would heal slowly and take a long time to see a difference. Like 6 months- 1 year.

Hector 

From reading what you written above, It sounds like you do a LOT  of strenuous exercising are you putting too much strain on your muscles, hence releasing more Lactic acid in your body causing the pain, and by adding more Lactic acid through Cheese which contains even more you could be overloading your system, maybe the strenuous exercising is a bit much for your body ?? It’s just a thought.

[Jackie Garrett]

31 minutes ago, Jackie Garrett said:

Hector 

From reading what you written above, It sounds like you do a LOT  of strenuous exercising are you putting too much strain on your muscles, hence releasing more Lactic acid in your body causing the pain, and by adding more Lactic acid through Cheese which contains even more you could be overloading your system, maybe the strenuous exercising is a bit much for your body ?? It’s just a thought.

https://www.webmd.com/fitness-exercise/guide/exercise-and-lactic-acidosis

[Jackie Garrett]

50 minutes ago, Jackie Garrett said:

Hector 

From reading what you written above, It sounds like you do a LOT  of strenuous exercising are you putting too much strain on your muscles, hence releasing more Lactic acid in your body causing the pain, and by adding more Lactic acid through Cheese which contains even more you could be overloading your system, maybe the strenuous exercising is a bit much for your body ?? It’s just a thought.

https://www.medicalnewstoday.com/articles/326521#lactic-acidosishttps://www.medicalnewstoday.com/articles/326521#lactic-acidosis

[Jackie Garrett]

55 minutes ago, Jackie Garrett said:

Hector 

From reading what you written above, It sounds like you do a LOT  of strenuous exercising are you putting too much strain on your muscles, hence releasing more Lactic acid in your body causing the pain, and by adding more Lactic acid through Cheese which contains even more you could be overloading your system, maybe the strenuous exercising is a bit much for your body ?? It’s just a thought.

Scott

These 2 articles are too long and are full of ads,  can you remove them please and I will try and find a shorter explanation on Exercising and Lactic Acidosis. 
Thankyou.

[HectorConvector]

1 hour ago, Jackie Garrett said:

Hector 

From reading what you written above, It sounds like you do a LOT  of strenuous exercising are you putting too much strain on your muscles, hence releasing more Lactic acid in your body causing the pain, and by adding more Lactic acid through Cheese which contains even more you could be overloading your system, maybe the strenuous exercising is a bit much for your body ?? It’s just a thought.

So I do exercise on every two out of three days on a cyclical basis., and my shortest exercise sessions are half an hour, longest ones 2.5 hours. On average, they are 1.5 hours long, five times a week, so 7.5 hours per week total. This would be done at a moderate level intensity. Could that be considered excessive?

[Scott Adams]

@Jackie Garrett, neither of your links you posted support your idea here that "by adding more Lactic acid through Cheese which contains even more you could be overloading your system."  In some people ingesting lactic acid can cause gas and bloating, but for most people ingesting lactic acid actually aids digestion, promotes nutrient absorption and gut health, and acts as an antioxidant:

https://www.healthline.com/nutrition/lactic-acid-in-food#gut-health

In countries where people live the longest, for example in Japan, they tend to eat a lot of fermented foods that contain lactic acid. I seriously doubt that it would be absorbed into muscle tissue and cause the issue you are claiming here.

[Jackie Garrett]

1 minute ago, HectorConvector said:

So I do exercise on every two out of three days on a cyclical basis., and my shortest exercise sessions are half an hour, longest ones 2.5 hours. On average, they are 1.5 hours long, five times a week, so 7.5 hours per week total. This would be moderate level exercise. Could that be considered excessive?

If you have an underlying condition then yes, Hector if you look up (Exercising and Lactic acidosis) pain and clammy skin are some of the symptoms you said you have,  I think it would be a good idea to get your Lactate levels checked just to rule things out to be on the safe side. I would paste them across but they are full of adverts, so annoying!!!

[Jackie Garrett]

2 minutes ago, Scott Adams said:

@Jackie Garrett, neither of your links you posted support your idea here that "by adding more Lactic acid through Cheese which contains even more you could be overloading your system."  In some people ingesting lactic acid can cause gas and bloating, but for most people ingesting lactic acid actually aids digestion, promotes nutrient absorption and gut health, and acts as an antioxidant:

https://www.healthline.com/nutrition/lactic-acid-in-food#gut-health

In countries where people live the longest, for example in Japan, they tend to eat a lot of fermented foods that contain lactic acid. I seriously doubt that it would be absorbed into muscle tissue and cause the issue you are claiming here.

Scott 

it’s when we get a build up in our bodies that it becomes a problem, some of us can’t excrete it the same as others.

[Jackie Garrett]

My pain was so bad when I had Dairy because of the acids, I’ve been there I removed it, the pain went and so did everything else I suffered with in time.

[Jackie Garrett]

10 minutes ago, Jackie Garrett said:

My pain was so bad when I had Dairy because of the acids, I’ve been there I removed it, the pain went and so did everything else I suffered with in time.

The Japanese diet is very different to the western diet, there is so much Lactic acid in so many of our foods/drinks, we would consume far more so they would not be consuming the amounts we do in our western  diet, I eat very consciously now.

[Scott Adams]

As far as I know @HectorConvector hasn't been diagnosed with lactic acidosis, and before altering your diet to treat something you haven't been diagnosed with, it would be best to first get tested for it. According to this article "Lactic acidosis is diagnosed through a fasting blood test."

https://www.healthline.com/health/lactic-acidosis#diagnosis

@Jackie Garrett have you been tested for lactic acidosis and diagnosed with it? I have no doubt that the diet seems to have helped you, but there is a difference between being self-diagnosed and officially diagnosed with something. Also, it seems that due to your personal lactic acidosis condition, you now seem to see that as a common in others here on a celiac disease forum, which isn't necessarily the case. Lactic acidosis is a rare, and potentially fatal condition, if left untreated.

[HectorConvector]

I'll at least stop the cheese for a few weeks and see what changes if anything - then when I catch up with neurologist again I'll request blood tests for lactic acid or the anion gap test so I can rule anything out.