Terrible Neurological Symptoms

[Scott Adams]

22 hours ago, HectorConvector said:

Also, the science I've seen seems to suggest that higher protein diets improve carb tolerance, rather than the other way around, at least in relation to diabetics (though I don't have that officially anyway).

It might make sense for you to get a fasting blood sugar test done, given your issues with carbs. In diabetics, carbs are more or less the same as eating sugar.

[HectorConvector]

2 hours ago, Scott Adams said:

It might make sense for you to get a fasting blood sugar test done, given your issues with carbs. In diabetics, carbs are more or less the same as eating sugar.

I know this thread's got quite long, but back on some previous pages I talked about all the testing of blood sugar I've done every year with a blood sugar meter (over several days and after meals) and I have an average fasting blood sugar of 79mg/dl, an average of all the days' testing I did in October last year. I'm even fitter and leaner now than I was then as well (well I've always been lean, BF% about 8%). So yeah diabetes has been ruled out time and time again with those readings and the doctor's ones which corroborate them. When I say issues with carbs I mean how I feel from eating them rather than any bloodwork which has all been normal.

[Sheikdaddy]

Hi there I'm new here.  I relate to much of the experience of the OP. But this thread has a lot to unpack.

 

Could you describe the pain when it happens?  Where specifically do you feel it, and are you able to make it worse through exertion?  In my case it seems that there's something in my hip that shoots pain to the inside of my knee and causes tingling and numbness in my big toe and another part of my foot. If I play high level Dance Dance Revolution or if I do the elliptical backwards I noticed this more.

I also have problems in my spine and my neck that shoot into my hands and fingers.

I was able to figure out that the biggest contributor to worst pain for me was nicotine.

 

Do you have any exposure first hand or second hand to nicotine? It is known to effect nerve issues.

 

Keep in mind that food reactions can sometimes take 72 hours.  Seems like I can eat gluten now and not have my worst reactions until 3 days later. 

 

No reason to assume that doesn't apply to other foods especially when they reach certain parts of the intestinal tract that might be deeper than scopes can find.

 

 

 

[HectorConvector]

31 minutes ago, Sheikdaddy said:

Hi there I'm new here.  I relate to much of the experience of the OP. But this thread has a lot to unpack.

 

Could you describe the pain when it happens?  Where specifically do you feel it, and are you able to make it worse through exertion?  In my case it seems that there's something in my hip that shoots pain to the inside of my knee and causes tingling and numbness in my big toe and another part of my foot. If I play high level Dance Dance Revolution or if I do the elliptical backwards I noticed this more.

I also have problems in my spine and my neck that shoot into my hands and fingers.

I was able to figure out that the biggest contributor to worst pain for me was nicotine.

Do you have any exposure first hand or second hand to nicotine? It is known to effect nerve issues.

Keep in mind that food reactions can sometimes take 72 hours.  Seems like I can eat gluten now and not have my worst reactions until 3 days later. 

No reason to assume that doesn't apply to other foods especially when they reach certain parts of the intestinal tract that might be deeper than scopes can find.

The pain is generally limited to hands and feet. Pain feels like short, sharp but intense stabs, or slightly longer, repeated burning sensations in the feet and it happens in random parts of my feet in different nerves. Sometimes it feels like something is crushing my feet for a few minutes. It can be in a toe, or the heel, top of foot, ankle. These "attacks" happen every few minutes, every day. The attacks get more frequent and intense over time when I am more active generally. 

As for nicotine, I am a lifelong non-smoker personally, and I don't have any second hand exposure to it nor have I at any point. Good that you managed to find out one of the biggest contributors in your case though. Still trial and error for me to work out what it is I'm having problems with here.

[AAARTIST]

I have thyroid issues, fibromyalgia, and white lesions characteristic of MS.  I just got my results back for Celiac and it was negative.  I immediately thought there is a mistake.  All these autoimmune disorders are like a VIN diagram and it is frustrating to figure out what is coming from where.  I am convinced I have Celiac and it blows my mind it can cause white lesions.  I am still not ruling MS out since my lesions are clustered. My point is, look at everything from all angles you can and a person can have more than one autoimmune disorder. 

[trents]

1 hour ago, AAARTIST said:

I have thyroid issues, fibromyalgia, and white lesions characteristic of MS.  I just got my results back for Celiac and it was negative.  I immediately thought there is a mistake.  All these autoimmune disorders are like a VIN diagram and it is frustrating to figure out what is coming from where.  I am convinced I have Celiac and it blows my mind it can cause white lesions.  I am still not ruling MS out since my lesions are clustered. My point is, look at everything from all angles you can and a person can have more than one autoimmune disorder. 

Could you have NCGS (non celiac gluten sensitivity) instead?

[Wheatwacked]

3 hours ago, AAARTIST said:

it blows my mind it can cause white lesions

Gluten sensitivity and epilepsy: a systematic review: "This has led some researchers to suggest that the calcifications may represent an epiphenomenon rather than being causative. One speculated that the cause of the development of calcifications is folate deficiency."

While this is a review of epilepsy and celiac disease or NCGS in the section on CEC it does point out the phenomena of white lesions and gluten sensitivity. Thanks to knitty kitty for the link. And to throw my own spin, wheat products are often fortified with folic acid, GFD products are not. When folate is low there is increased need for choline as the methyl donor and vice versa. Choline intake in the US is overall less than the RDI. One solution: More beans {folate) and eggs (choline).

[knitty kitty]

@HectorConvector,

Have you been checked for Lyme Disease?   Lyme Disease has been known to cause nerve damage and worsening symptoms when carbohydrates are consumed.  The AutoImmune Protocol Diet is recommended for symptom relief.

Recent Progress in Lyme Disease and Remaining Challenges

https://www.frontiersin.org/articles/10.3389/fmed.2021.666554/full

 

 

@AAARTIST

Thiamine deficiency and B12 deficiency can each cause white matter lesions.  Vitamin deficiencies can occur without Celiac Disease.  

Some Celiacs are serionegative. Have you considered a genetic test?

 

[knitty kitty]

@HectorConvector,

Are you taking any L-glutamate supplements or shakes or anything with MSG in it?  

Here's a thread that explains how L-glutamate may trigger a reaction like gluten does.  

 

[HectorConvector]

9 hours ago, knitty kitty said:

@HectorConvector,

Have you been checked for Lyme Disease?   Lyme Disease has been known to cause nerve damage and worsening symptoms when carbohydrates are consumed.  The AutoImmune Protocol Diet is recommended for symptom relief.

Recent Progress in Lyme Disease and Remaining Challenges

https://www.frontiersin.org/articles/10.3389/fmed.2021.666554/full

 

Not been tested for Lyme Disease. Can add it to my list of things to get checked. Don't recall having any initial signs of being infected.

5 hours ago, knitty kitty said:

@HectorConvector,

Are you taking any L-glutamate supplements or shakes or anything with MSG in it?  

Here's a thread that explains how L-glutamate may trigger a reaction like gluten does.  

 

I don't eat anything with MSG or much L-glutamine that I know of. 

[AAARTIST]

10 hours ago, Wheatwacked said:

Gluten sensitivity and epilepsy: a systematic review: "This has led some researchers to suggest that the calcifications may represent an epiphenomenon rather than being causative. One speculated that the cause of the development of calcifications is folate deficiency."

While this is a review of epilepsy and celiac disease or NCGS in the section on CEC it does point out the phenomena of white lesions and gluten sensitivity. Thanks to knitty kitty for the link. And to throw my own spin, wheat products are often fortified with folic acid, GFD products are not. When folate is low there is increased need for choline as the methyl donor and vice versa. Choline intake in the US is overall less than the RDI. One solution: More beans {folate) and eggs (choline).

 

56 minutes ago, HectorConvector said:

Not been tested for Lyme Disease. Can add it to my list of things to get checked. Don't recall having any initial signs of being infected.

I don't eat anything with MSG or much L-glutamine that I know of. 

 I have always eaten beans, eggs, and drank lots of orange juice.  I can’t see lack of folate being my issue but I don’t know.  Funny thing is, I have a choline and Inositol supplement in my cabinet and have been thinking about taking it again. I will have to reread your post again since my brain is having some issues this morning.  I guess the lions mane mushrooms didn’t kick in. 😁

[Wheatwacked]

9 minutes ago, AAARTIST said:

been thinking about taking it again

Might as well. You already spent the money.

[Jackie Garrett]

19 hours ago, AAARTIST said:

 

 I have always eaten beans, eggs, and drank lots of orange juice.  I can’t see lack of folate being my issue but I don’t know.  Funny thing is, I have a choline and Inositol supplement in my cabinet and have been thinking about taking it again. I will have to reread your post again since my brain is having some issues this morning.  I guess the lions mane mushrooms didn’t kick in. 😁

Hector 

Are you still drinking  Orange Juice ? With me when I drank it, it added to my pain it is very acidic, I will have a whole orange now and again and I am ok with that. The juice is too  strong for my body. 

[AAARTIST]

On 4/18/2022 at 9:53 PM, knitty kitty said:

@HectorConvector,

Have you been checked for Lyme Disease?   Lyme Disease has been known to cause nerve damage and worsening symptoms when carbohydrates are consumed.  The AutoImmune Protocol Diet is recommended for symptom relief.

Recent Progress in Lyme Disease and Remaining Challenges

https://www.frontiersin.org/articles/10.3389/fmed.2021.666554/full

 

 

@AAARTIST

Thiamine deficiency and B12 deficiency can each cause white matter lesions.  Vitamin deficiencies can occur without Celiac Disease.  

Some Celiacs are serionegative. Have you considered a genetic test?

 

I spoke to my doctor’s office yesterday and he said he will do a biopsy on me.  I am guessing that will be a definitive test but I’m not sure.  I have never been tested for Lyme Disease so I need to put that on my list as well.  I am not a big believer in blood tests since I had Hashimoto’s and that turned up negative until I had a thyroidectomy and a biopsy was done.  All of you are such a great source of information and knowledge.  Thank you!

[HectorConvector]

3 hours ago, Jackie Garrett said:

Hector 

Are you still drinking  Orange Juice ? With me when I drank it, it added to my pain it is very acidic, I will have a whole orange now and again and I am ok with that. The juice is too  strong for my body. 

You quoted AAARTIST not me, I don't personally drink any juices, only water. 

Anyway an update, I replaced the cheese with a peanut butter sandwich to get the same calories (400). Not good results. My nerve pain turned more into intense stabbing burning pains in the feet, and I am getting lots of wind/bloating etc.... which I didn't have before. This was why I was eating cheese before, because I seem to digest it easily and it doesn't flare my nerve pain up. Last night was particularly awful with stabbing burning pains in my toes. So I think I'm going to re-instate the cheese again, I don't think I have a problem with it or any lactose issues. 

[AAARTIST]

31 minutes ago, HectorConvector said:

You quoted AAARTIST not me, I don't personally drink any juices, only water. 

Anyway an update, I replaced the cheese with a peanut butter sandwich to get the same calories (400). Not good results. My nerve pain turned more into intense stabbing burning pains in the feet, and I am getting lots of wind/bloating etc.... which I didn't have before. This was why I was eating cheese before, because I seem to digest it easily and it doesn't flare my nerve pain up. Last night was particularly awful with stabbing burning pains in my toes. So I think I'm going to re-instate the cheese again, I don't think I have a problem with it or any lactose issues. 

It is too strong for me as well.  If I drink it, I add water to it.  It is amazing to me how many MS symptoms and Celiac symptoms overlap.  I’m exhausted again today.  It feels like it will never end. On the positive side, I have noticed a big difference in going to the bathroom, bloating, and swelling in just the few days I have been gluten free. The ulcers on my lip are also shrinking and getting better.  My mind is blown that gluten has had such control over me!

[Jackie Garrett]

28 minutes ago, HectorConvector said:

You quoted AAARTIST not me, I don't personally drink any juices, only water. 

Anyway an update, I replaced the cheese with a peanut butter sandwich to get the same calories (400). Not good results. My nerve pain turned more into intense stabbing burning pains in the feet, and I am getting lots of wind/bloating etc.... which I didn't have before. This was why I was eating cheese before, because I seem to digest it easily and it doesn't flare my nerve pain up. Last night was particularly awful with stabbing burning pains in my toes. So I think I'm going to re-instate the cheese again, I don't think I have a problem with it or any lactose issues. 

Thanks for update Hector, are you sure peanuts aren’t an issue, a lot of people can not have peanuts, maybe see if your Dr. Will refer you for more allergy testing, because something is definitely setting you off. A food diary is good, you may be doing that already ?

[info]

This might sound random, but try taking a cold shower every day. Start at 30 seconds after your warm shower and gradually work up to 3 minutes. This can calm the immune system and has put my serious skin problems into remission after 12 years of suffering and a whole array of creams, steroids and drugs.

Give it a go, it can't harm you and it costs nothing. I noticed a real improvement after about 6 weeks.

Good luck.

[Jackie Garrett]

10 minutes ago, Jackie Garrett said:

Thanks for update Hector, are you sure peanuts aren’t an issue, a lot of people can not have peanuts, maybe see if your Dr. Will refer you for more allergy testing, because something is definitely setting you off. A food diary is good, you may be doing that already ?

Have you tried a low histamine diet,  even if it’s for a month you could see if that helps improve your symptoms a lot of people have a lot of success with it. 

[trents]

1 hour ago, AAARTIST said:

I spoke to my doctor’s office yesterday and he said he will do a biopsy on me.  I am guessing that will be a definitive test but I’m not sure.  I have never been tested for Lyme Disease so I need to put that on my list as well.  I am not a big believer in blood tests since I had Hashimoto’s and that turned up negative until I had a thyroidectomy and a biopsy was done.  All of you are such a great source of information and knowledge.  Thank you!

A biopsy for what? Celiac disease or Lyme disease? If celiac disease, I hope you haven't already started the gluten free diet because of so it will likely render the biopsy useless.

[HectorConvector]

1 hour ago, Jackie Garrett said:

Thanks for update Hector, are you sure peanuts aren’t an issue, a lot of people can not have peanuts, maybe see if your Dr. Will refer you for more allergy testing, because something is definitely setting you off. A food diary is good, you may be doing that already ?

Peanuts never used to be an issue, but maybe I'm starting to develop an intolerance to them? It's all a mystery. My doctor is supposed to have referred me to a dietitian but heard nothing yet. Yes I have a food diary since November 2021. 

[Sheikdaddy]

There's still too much to unpack but I'm seeing a pattern.

Omega 6 heavy fats and oils are known cause of inflammation when they are in excess and out of balance with omega-3s.

Sunflower oil safflower oil canola oil peanut vegetable oil soybean oil corn oil are all trash oils that no one should ever eat for a lot of inflammatory reasons as well as the synthetic and chemical nature of the extraction.

Apply the same logic to the foods that have higher fat.  You eat a cheese sandwich and you're fine, you eat peanut butter sandwich and you're not.

Whatever oils you cook with switch to saturated fat based oils for now. Stop eating beans and legumes (peanuts is a bean) and don't consume those vegetable oils.

You would be fine to use olive oil and avocado oil, except olive oil can oxidize at lower temperatures and avocado oil is often fake or tainted

Don't buy cheap quality see thru plastic bottle oils.  Dark glass preferred.

 

------

 

I think it's important you start logging everything you consume including your toothpaste and in the quantities that you do. It's still most likely that you're not aware that something has gluten, that one of your cooking vessels is contamined, or that your diet has too many ingredients to be able to properly rule out, or that you are assuming if you don't have a reaction within an hour or so it's not that food.

 

My issues can sometimes take 72 hours from a tiny exposure and I still don't know if I have Celiac yet.

 

 

[HectorConvector]

10 minutes ago, Sheikdaddy said:

There's still too much to unpack but I'm seeing a pattern.

Omega 6 heavy fats and oils are known cause of inflammation when they are in excess and out of balance with omega-3s.

Sunflower oil safflower oil canola oil peanut vegetable oil soybean oil corn oil are all trash oils that no one should ever eat for a lot of inflammatory reasons as well as the synthetic and chemical nature of the extraction.

Apply the same logic to the foods that have higher fat.  You eat a cheese sandwich and you're fine, you eat peanut butter sandwich and you're not.

Whatever oils you cook with switch to saturated fat based oils for now. Stop eating beans and legumes (peanuts is a bean) and don't consume those vegetable oils.

You would be fine to use olive oil and avocado oil, except olive oil can oxidize at lower temperatures and avocado oil is often fake or tainted

Don't buy cheap quality see thru plastic bottle oils.  Dark glass preferred.

 

------

 

I think it's important you start logging everything you consume including your toothpaste and in the quantities that you do. It's still most likely that you're not aware that something has gluten, that one of your cooking vessels is contamined, or that your diet has too many ingredients to be able to properly rule out, or that you are assuming if you don't have a reaction within an hour or so it's not that food.

 

My issues can sometimes take 72 hours from a tiny exposure and I still don't know if I have Celiac yet.

 

 

Thanks for the info, agree with most of this, except I'm pretty sure I'm not getting any gluten, as I make all my food myself, and none of my utensils have ever had gluten in contact with them as I've been on a gluten free diet for more than 10 years and moved house/flat and have different utensils since then. Also, my nerve pain didn't actually start until after I'd been diagnosed with celiac disease, and was gluten-free. I actually never had it when I was suffering the effects of gluten before diagnosis, for whatever reason. I keep a food diary as well.

I don't eat a cheese sandwich, just the cheese on its own, and it still causes nerve pain, as I get nerve pain after eating absolutely anything at all - it's just not as bad as when I eat peanut butter.

I'm not even convinced it is food that is even the direct cause of the nerve problem; just that different foods trigger my nerve pain in different ways.  The nerve pain started developing after a severe virus I had in 2009. Not just food triggers the pain, but exercise, heat and toxins.

4 minutes ago, HectorConvector said:

 

 

[Sheikdaddy]

And as soon as I go gluten free and start feeling better mentally my nerve issues this week have been increased even though my serious mental problems are much more stable

Gluten is considered an opioid maybe it is literally and that is why we're in more pain gluten free.

But honestly, this thread is a clusterfuck and there's no real elimination going on here.

The times I've done keto to deal with my problems the same way you were trying to, if one day I went completely insane and just said "well keto isn't the answer" or said "today I had a potato and things went wrong so it must be the potatoes" is just going to lead to an endless circle of logic.

When I started adding gluten to my keto life things got worse physically and mentally but it took years to be certain of that.  And even now you never know.

----

You need to create a true baseline elimination diet for a week or two to get your body adjusted and then add things if you're curious as to what's happening.  I just fast for a week personally but I have experience and it's dangerous for rebound eating.

 

But you can't just say I didn't have a reaction or I did have a reaction and therefore I have a conclusion when you haven't spent a long time getting your body adapted to something.

If I have a slice of bread right now, starting tomorrow I will be psychotic for a week or two, on top of the serious bowel issues.  If I assume 3 days from now that because I tried pecans that I'm insane that it must be the pecans, or if I eat the pecans and don't have a bad day and assume it's not the pecans,  I haven't learned anything.

 

There have been times in my life where it would take over 3 weeks for what is now I like to refer to gluten balls of s$#& traveling through my system to come out.  That's three weeks without a poop and no enemas or laxatives would work.

 

I can't be certain that if that's effecting me throughout the course of the 3 weeks that it's not subject to that cause when I eat other things.

 

Why can I eat potatoes just fine sometimes but my stomach is rumbling others?  Maybe I'm still glutened when it happens.

----

 

We're going to help you figure this out.

 

 

[HectorConvector]

15 minutes ago, Sheikdaddy said:

And as soon as I go gluten free and start feeling better mentally my nerve issues this week have been increased even though my serious mental problems are much more stable

 

15 minutes ago, Sheikdaddy said:

Gluten is considered an opioid maybe it is literally and that is why we're in more pain gluten free.

But honestly, this thread is a clusterfuck and there's no real elimination going on here.

I'm not trying to do an elimination diet, I've been following the initial advice of Wheatwacked in keeping a dairy of food and concentrating on getting the minimum RDA of all the vitamins/minerals I wasn't getting before. 

15 minutes ago, Sheikdaddy said:

The times I've done keto to deal with my problems the same way you were trying to, if one day I went completely insane and just said "well keto isn't the answer" or said "today I had a potato and things went wrong so it must be the potatoes" is just going to lead to an endless circle of logic.

I'm not sure what you mean. I've simply described the way different foods make my pain respond, and haven't tried keto or said if anything is or isn't the answer. I don't know what the cause of the underlying problem is, nor have I said I know what it is. People in this thread have wondered, and given their opinions, but until I get clinical confirmation of something, I'm the first to admit I obviously don't know.

15 minutes ago, Sheikdaddy said:

 

You need to create a true baseline elimination diet for a week or two to get your body adjusted and then add things if you're curious as to what's happening.  I just fast for a week personally but I have experience and it's dangerous for rebound eating.

I was about to do that, until people on this thread said I shouldn't, because I could be depriving myself of more nutrients in doing so. I also said, at some point in this thread, that if I do that it will be under the guidance of a dietitian/nutritionist and I haven't had a referral to one yet.

15 minutes ago, Sheikdaddy said:

But you can't just say I didn't have a reaction or I did have a reaction and therefore I have a conclusion when you haven't spent a long time getting your body adapted to something.

I don't see where I've ever said I have a conclusion at any point in this thread. If I did have one, I'd have cured the problem by now. I have described the different ways in which my nerve pain responds not only to different foods, but also to activities such as different types of exercise, heat, etc. These descriptions might help people who know something to suggest their ideas on it. However, the bottom line as is clear in this thread, is that I am undergoing clinical evaluation and that's the ultimate thing that will provide evidence of what is really going on here. I'm not a physician and have not "concluded" anything about this other than describing what affects my symptoms more or less.

15 minutes ago, Sheikdaddy said:

If I have a slice of bread right now, starting tomorrow I will be psychotic for a week or two, on top of the serious bowel issues.  If I assume 3 days from now that because I tried pecans that I'm insane that it must be the pecans, or if I eat the pecans and don't have a bad day and assume it's not the pecans,  I haven't learned anything.

I haven't used any of that type of logic. I've made pretty clear what foods affect me in what ways. Carbohydrates making my pain generally worse; I've been consistent on that. Hence why I now eat mostly meat/cheese and nuts. This has always been the case, for years. Also, exercise making the pain worse. Again, I've been consistent on that being the case, for years.

The only reason I took out cheese and replaced it with something else, then described the effects, was in response to advice from somebody speculating it could be to do with intolerance to dairy, but again, consistent with my prior descriptions, things like cheese are better for the condition than peanut butter, that's always been the case. 

15 minutes ago, Sheikdaddy said: