Terrible Neurological Symptoms

[HectorConvector]

The reality is, this being a public forum, I'm getting a lot of different people coming in reading my descriptions of my symptoms and therefore a lot of suggestions, which while helpful, puts me in a position where it's quite overwhelming, and not easy for me to know what to do next. So I've been hesitant to make any meaningful changes to my current diet, which is based on meeting the proper RDA for the nutrients an adult is supposed to get. 

So, at this point, I'll say thanks for the suggestions from everyone, but I'm going to wait out any results and evidence from the clinical evaluations and the doctors I am seeing, even it that's taking its time. The fact is that the clinical evaluation is and has eliminated various potential causes, so its doing its job but slowly. I'll just say thanks for any suggestions and advice in this thread from folks, but I think it's time to lock this thread now. 

[Wheatwacked]

3 hours ago, HectorConvector said:

I was eating cheese before, because I seem to digest it easily and it doesn't flare my nerve pain up.

Most peanut butter that I know of has added sugars. Irish dairy has a better omega 6:3 ratio because they and New Zealand are mostly grass fed. I've raised my vitamin C to 1000 to 2000 mg/day on top of the 840 mg phosphatidyl Choline and 1000 mg of Thiamine and it seems to help my neuropathy, average sleep time has increased from 2 and a half hours to 4 hours before my feet wake me up. The mitochondria membrane is 90% phosphatidyl choline and the mitochondria use Thiamine to process sugars. The minimum RDA is set as 95% healthy people do OK, so you may need closer to the upper limit to reverse. Also look at your iodine intake. Keep us updated in any case.

[HectorConvector]

1 hour ago, Sheikdaddy said:

 

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

Well lots of people have suggested things from their own experience, which I have considered (though not necessarily acted on yet, and I'm not one to jump to conclusions, as you have insinuated) and you describe it as a "clusterfuck", I would say it's let me discover a number of tests to recommend to my neurologist, so I can eliminate things during the clinical evaluation. This thread now appears it could be going down a certain tone, and has run its course now, so thanks to everyone for the suggestions, I'll inform my doctors of some of the tests that have been recommended, so more progress can be made, and this thread will now be locked.

 

[HectorConvector]

6 minutes ago, Wheatwacked said:

Most peanut butter that I know of has added sugars. Irish dairy has a better omega 6:3 ratio because they and New Zealand are mostly grass fed. I've raised my vitamin C to 1000 to 2000 mg/day on top of the 840 mg phosphatidyl Choline and 1000 mg of Thiamine and it seems to help my neuropathy, average sleep time has increased from 2 and a half hours to 4 hours before my feet wake me up. The mitochondria membrane is 90% phosphatidyl choline and the mitochondria use Thiamine to process sugars. The minimum RDA is set as 95% healthy people do OK, so you may need closer to the upper limit to reverse. Also look at your iodine intake. Keep us updated in any case.

While I'm still on duloxetine and taking lots of thiamine (400+mg) and vit C (1,000mg+) the symptoms are generally consistent with no clear change in any direction, so I'll wait and see how the clinical evaluation goes, and at some point in the future when I really know something I can start a new thread and link to this one once I know some information.

[HectorConvector]

Finally, I'm very grateful for the advice and suggestions from members of the forum regarding my neurological symptoms, and I'll suggest some of the tests mentioned to my neurologist.   I'm now going to leave this in the hands of the clinicians doing their evaluations. I am now unfollowing this thread. 

Thanks everyone.

[Jackie Garrett]

11 minutes ago, HectorConvector said:

Finally, I'm very grateful for the advice and suggestions from members of the forum regarding my neurological symptoms, and I'll suggest some of the tests mentioned to my neurologist.   I'm now going to leave this in the hands of the clinicians doing their evaluations. I am now unfollowing this thread. 

Thanks everyone.

All the best Hector, I really hope you find the answers, please  let us know if you do. 

[HectorConvector]

I'm just reviving this thread to update with *factual* information. Not assumptions, or anything vague but known facts.

1). results of an MRI scan show a herniated disc in the lower spine area. However, the letter from the doctor says they don't believe this explains the symptoms. However, the symptoms were very severe and violent when I did weight training, and have been unproblematic since I stopped

2). Some (but not necessarily all) the types of neuralgia I get have found, through trial and error type elimination diet methods over the last months, to be caused by food sensitivities and the body's immune reaction to certain foods.

I can now confirm that there are two types of food I absolutely need to avoid:

-EGGS

-NUTS

Avoiding these foods will almost entirely eliminate one form of the severe neuralgia I was getting.

That is all I know for sure as of this time.

It was not easy to conclude this finally, because when the offending items are part of the diet, the symptoms can occur after eating ANYTHING. As such, it is very hard to identify things, but I finally have, as all those symptoms go when these items are removed.

[trents]

Thanks for the update, Hector.

[Joan Bundtzen]

On 11/20/2021 at 4:26 PM, HectorConvector said:

Hello.

34 year old man. In 2010, I was tested for celiac disease due to having a sister who had it. I never suspected I'd have it as I had more or less no symptoms then. The antibodies were present in the blood test and the gastroscopy revealed the typical damage. 

I immediately went on a gluten free diet, which I've maintained in the 11 years since.

Back then, I had mild shooting and tingling in my feet and sometimes hands. Over most of the next 8 years or so this was manageable and at a low level. It always seemed to get worse after eating, however. The more I eat (of anything, all gluten free), the worse it would get. 

I am also chronically underweight, and so when I try to gain weight, my nerve symptoms get worse.

However, in the last 2 years my neurological symptoms have totally gone out of control, for no obvious reason. I have multiple violent attacks of nerve pain in my feet mostly, every day. It gets violent after meals of any kind, and terribly violent in the evenings. I get stabbing, crushing, burning pains in both feet and sometimes hands. I also started developing painful stabbing headaches behind my eye area and in the frontal part of head. All this gets worse with food intake. 

I've been seeing doctors about this and been on multiple medications to control the pain. Carbamazepine, Gabapentin and Pregabalin, the anti convulsants, had been useless. Duloxetine has been the best so far, and I'm going back on it next week. 

I had a skin biopsy to look at small fibres but the result was normal. There is no diabetes, as all that was tested and I test myself with a blood sugar meter several times a year, everything is normo-glycaemic. 

I don't know why this has got so out of control in the last two years despite being gluten free. My immune system is reacting to everything I eat giving me terrible nerve pains that are getting worse by the very month. I don't know where this will end. Things that trigger the pain include food obviously, heat (I have to sleep with my feet outside of the bed or they burn like hell), dehydration, concentration and excitement of any kind. It's hard to work on anything as the pain will get intense. 

Somehow I get no digestive symptoms at all but I get awful nerve pain every day. Is the the celiac disease do you think, or something else. If it is, why is it so bad after 11+ years on a gluten-free diet? Everything I read about suggests it would get better. Yet it was barely there at diagnosis and now it's extremely violent and far worse since going gluten-free.

Does anyone else have this problem?

You might consider the possibility that you have a spontaneous spinal fluid leak--go to the website spinalcsfleak.org which is run by Dr Wouter Schievink at Cedars-Sinai in Los Angeles, an expert in the field.  I've read about it because I probably have it and am undergoing imaging now--but it can present with symptoms all over the body, usually with a postural headache but some people don't have headaches at all.  People with spinal fluid leaks often develop autoimmunity, like celiac and thyroid disease (I have both)--and I wonder if the leakage causes antibody formation?  Leaks can be due to trauma, pregnancy, surgeries in the area of the spine, or without any known cause and they can be present for years--the longest I found in the medical literature was 15 years.   Most physicians are unaware of spontaneous leaks so it is a diagnosis often missed.  Check out the website and see what you think.  Spinal fluid leaks are fixable. Joan Bundtzen M.D.

[Scott Adams]

This is a first for me, spinal fluid leak? Many of the symptoms do overlap:

https://spinalcsfleak.org/about-spinal-csf-leaks/symptoms-of-spinal-csf-leak/ 

[Joan Bundtzen]

I think it's one of the most most missed diagnoses, and the science of it is relatively new--there are only about 20 experts around the country, like Dr Schievink at Cedars-Sinai, Dr Dillon at UCSF, Dr Kranz at Duke.  I've written a journal article about it that I've submitted for publication and it has all the references that matter.  I can send it to you--about 3 pages--if you tell me how to do that.   

Joan Bundtzen M.D.

[Scott Adams]

Feel free to PM me and you can attach it as a PDF.

[HectorConvector]

From what I've researched, I doubt a spinal fluid leak is the cause.

The headaches (more of an ice pick stabbing pain behind the eyes and in the forehead) has been now resolved - it was a direct consequence of nuts (mostly cashew nuts) and a lot of eggs in my diet. I was eating more high protein/unsaturated fat foods to reduce my carb intake thinking the problem was carb related. It wasn't as it happens. So that now no longer happens since removing the offending items from my diet. Dairy can now be 100% ruled out too - my body has no problems or sensitivity to that.

In terms of the foot and sometimes hand pain, it appears that psychological and physical stress are the major causes. Relaxing, sleeping and meditating more seem to ameliorate the symptoms substantially. Cutting out peanuts, interestingly, has also diminished the symptoms - when I ate a lot of peanuts trying to gain weight, I found that my foot pain became very violent. 

This would of course be frowned upon, but alcohol also dramatically subdued the nerve pain symptoms. Of course, drinking much of that was not sustainable and I didn't want to cause other problems so I couldn't keep that up. Duloxetine works quite well so I'm still on that. 

Anyway, since removing offending items of foods, mainly eggs and all types of nuts, I've been able to gain weight by eating a higher carb diet and reached 200lb which I should be as I am 6' 4". 

So I'm going to conclude this by saying; the cause of the problems is multiple food sensitivities, compounded by severe psychological stress in particular. Deficiencies in types of nutrients has been repeatedly ruled out. Diabetes and other metabolic disturbances are ruled out. 

[trents]

Thanks for the update, HectorConvector. So glad you have achieved a major degree of resolution of symptoms. Like you, I cannot do peanuts or tree nuts. I can do eggs if they are poached (the steam hydorlizes the egg protein) if not too many or too often. I suffer from migraines/headaches as the main symptoms of these offenders.

[knitty kitty]

@Joan Bundtzen,

Have you done any investigation into Thiamine deficiency as a cause of cerebral spinal fluid leakage?

https://pubmed.ncbi.nlm.nih.gov/6182272/

 

 

[trents]

37 minutes ago, knitty kitty said:

@Joan Bundtzen,

Have you done any investigation into Thiamine deficiency as a cause of cerebral spinal fluid leakage?

https://pubmed.ncbi.nlm.nih.gov/6182272/

 

 

Interesting! Does the term "leak" refer to literally to a physical leak?

[knitty kitty]

1 hour ago, trents said:

Interesting! Does the term "leak" refer to literally to a physical leak?

Yes, in some cases, people with CSF leaks have the fluid leak out the nose or down the throat.  Others have tears in the membrane that is supposed to keep the fluid in.  

Thiamine contributes to the integrity of the membrane and in regulation of CSF pressure.  

 

[Geoff01]

On 11/21/2021 at 9:26 AM, HectorConvector said:

Hello.

34 year old man. In 2010, I was tested for celiac disease due to having a sister who had it. I never suspected I'd have it as I had more or less no symptoms then. The antibodies were present in the blood test and the gastroscopy revealed the typical damage. 

I immediately went on a gluten free diet, which I've maintained in the 11 years since.

Back then, I had mild shooting and tingling in my feet and sometimes hands. Over most of the next 8 years or so this was manageable and at a low level. It always seemed to get worse after eating, however. The more I eat (of anything, all gluten free), the worse it would get. 

I am also chronically underweight, and so when I try to gain weight, my nerve symptoms get worse.

However, in the last 2 years my neurological symptoms have totally gone out of control, for no obvious reason. I have multiple violent attacks of nerve pain in my feet mostly, every day. It gets violent after meals of any kind, and terribly violent in the evenings. I get stabbing, crushing, burning pains in both feet and sometimes hands. I also started developing painful stabbing headaches behind my eye area and in the frontal part of head. All this gets worse with food intake. 

I've been seeing doctors about this and been on multiple medications to control the pain. Carbamazepine, Gabapentin and Pregabalin, the anti convulsants, had been useless. Duloxetine has been the best so far, and I'm going back on it next week. 

I had a skin biopsy to look at small fibres but the result was normal. There is no diabetes, as all that was tested and I test myself with a blood sugar meter several times a year, everything is normo-glycaemic. 

I don't know why this has got so out of control in the last two years despite being gluten free. My immune system is reacting to everything I eat giving me terrible nerve pains that are getting worse by the very month. I don't know where this will end. Things that trigger the pain include food obviously, heat (I have to sleep with my feet outside of the bed or they burn like hell), dehydration, concentration and excitement of any kind. It's hard to work on anything as the pain will get intense. 

Somehow I get no digestive symptoms at all but I get awful nerve pain every day. Is the the celiac disease do you think, or something else. If it is, why is it so bad after 11+ years on a gluten-free diet? Everything I read about suggests it would get better. Yet it was barely there at diagnosis and now it's extremely violent and far worse since going gluten-free.

Does anyone else have this problem?

Hi Hector,

The gluten-free business has become big business and there are some misconceptions around about what eating gluten-free really means if you have celiac disease. Most celiac are especially sensitive to wheat Rye and Barley but some, perhaps more men, and those with heterogeneous HLA-DQ genes primarily show nerve damage with gut problems manifesting layer in life when the damage builds. 

This is the case with me also. 25yrsof building neuropathy leading to low level Ataxia in my legs until my gut started playing up. I react to ALL cereals which includes oats, corn and rice. Probably also millet etc. I also react to prolamines (gluten-like proteins) in ALL legumes (beans). So I cannot eat hummus, peas or green beans. Or any beans at all.

Most commercial gluten-free foods contain oats, rice and beans. So..... I really cannot eat any commercial gluten-free food at all. I cook meat and veges from scratch with. Are fully vetted spices and sauces. You may find you get relief by doing the same.

Check out a book "no grain no pain" by Dr Peter Osborne and others like him. gluten-free is a lot more complex than just cutting out wheat.

Cheers. I'm just sitting down to a green Thai curry so all is not lost.

[HectorConvector]

6 hours ago, Geoff01 said:

Hi Hector,

The gluten-free business has become big business and there are some misconceptions around about what eating gluten-free really means if you have celiac disease. Most celiac are especially sensitive to wheat Rye and Barley but some, perhaps more men, and those with heterogeneous HLA-DQ genes primarily show nerve damage with gut problems manifesting layer in life when the damage builds. 

This is the case with me also. 25yrsof building neuropathy leading to low level Ataxia in my legs until my gut started playing up. I react to ALL cereals which includes oats, corn and rice. Probably also millet etc. I also react to prolamines (gluten-like proteins) in ALL legumes (beans). So I cannot eat hummus, peas or green beans. Or any beans at all.

Most commercial gluten-free foods contain oats, rice and beans. So..... I really cannot eat any commercial gluten-free food at all. I cook meat and veges from scratch with. Are fully vetted spices and sauces. You may find you get relief by doing the same.

Check out a book "no grain no pain" by Dr Peter Osborne and others like him. gluten-free is a lot more complex than just cutting out wheat.

Cheers. I'm just sitting down to a green Thai curry so all is not lost.

 

Hi,

Yeah I also cook my own meals which are typically simple with meat & veg. I don't eat rye or barley and make sure they're not in anything I buy if I buy anything processed. Not eating beans or rice atm either, though I never had problems with rice, beans, not sure. 

Bear in mind, I live in the UK, not sure how different it is here, but legally every single ingredient must be declared on the packaging and possible allergens are always emboldened - so it's very easy to avoid anything that one thinks might be causing them symptoms. 

Bought foods in the supermarket here have this warning (or similar): "Allergy Advice: For allergens, see ingredients in bold. Also, may contain peanuts and nuts".

The neurology examinations I had ruled out neuropathy, but haven't come to a definitive conclusion. The main thing that controls my symptoms is relaxation both physically and mentally. As for the stabbing headaches, that was found to be nuts and eggs that caused that, so I know to avoid those. 

The foot pain I get is a weird one: it has clearly been made worse by certain foods (peanuts in particular), but it's mostly stress that makes it worse. Once, at an airport, I accidentally (due to a long story) ate a burger made with a normal wheat bun by mistake. I realised it wasn't right by the texture but had mostly finished it anyway, but for whatever reason, I had NO symptoms at all. No gut trouble, no nerve pain, nothing. I was always an asymptomatic celiac before diagnosis in 2010 - only being tested as a precaution because a family member had it. I firmly believed there was no chance I'd have it. I was wrong (blood test and endoscopy both proved its existence). 

So, yeah, weird stuff. Not least because as I previously said, my nerve pain started just around the same time as I went properly gluten free in 2010. The burger incident was in 2016, but that year was a "good" year for nerve pain, which only got out of control in 2020, putting me on medication in that year).

[MiriamW]

On 11/21/2021 at 9:54 PM, knitty kitty said:

@HectorConvector,

Have you heard of the Low Histamine Diet?  

https://theceliacmd.com/the-low-histamine-diet-what-is-it-and-does-it-work/

I went on the Autoimmune Paleo diet and removed high histamine foods.  

Nuts (and peanuts) and some fish are high in histamine.  Some vegetables like nightshades (tomatoes, potatoes, eggplant and peppers) are high in histamine, too.  

When I eat high histamine foods, I feel agitated and can't sit still.  Is this similar to your feeling that you have too much energy?  

High dose Thiamine with magnesium really helped me.  By flooding the system with thiamine, thiamine can get into the cells easily.  Thiamine provides energy for cells to function and is necessary for the reduction of histamine in the body.  B12 also helps get rid of histamine.  

A B Complex in addition to the multivitamin would ensure you're getting enough B vitamins.  Since B vitamins are water soluble, excess is excreted easily.  

Multivitamins can contain minerals that compete with B vitamins for absorption.  I take my B Complex separately from minerals.  

Hope this helps.

 

@knitty kittyplease could you recommend some good source(s) for the Autoimmune Paleo diet? There are so many different books and websites out there and they vary in information.....hence I was wondering, who is your favourite author or website to go to? Many thanks 

[knitty kitty]

4 hours ago, MiriamW said:

@knitty kittyplease could you recommend some good source(s) for the Autoimmune Paleo diet? There are so many different books and websites out there and they vary in information.....hence I was wondering, who is your favourite author or website to go to? Many thanks 

My favorite AIP diet book is "The Paleo Approach" by Dr. Sarah Ballantyne.  

https://www.thepaleomom.com/autoimmune-protocol-clinical-trials-and-studies/

Dr. Ballantyne is Celiac herself, and developed the AIP diet for herself and her Celiac kids.  The AIP diet has been scientifically proven to promote intestinal healing.

Hope this helps!  

[MiriamW]

2 hours ago, knitty kitty said:

My favorite AIP diet book is "The Paleo Approach" by Dr. Sarah Ballantyne.  

https://www.thepaleomom.com/autoimmune-protocol-clinical-trials-and-studies/

Dr. Ballantyne is Celiac herself, and developed the AIP diet for herself and her Celiac kids.  The AIP diet has been scientifically proven to promote intestinal healing.

Hope this helps!  

@knitty kittythank you very much! 

[Gutaid]

You need a nerve conductance test by a neurologist.  I have peripheral neuropathy pain like yours and I was diagnosed with Peripheral neuropathy-!the painful version.   Good luck I hope you get better 

[knitty kitty]

@Gutaid,

We're you checked for vitamin and mineral deficiencies? 

Certain vitamin deficiencies can cause peripheral neuropathy.  Nerve conduction tests reflect the damage done to the nerves, but not the cause.  

Nerve damage caused by vitamin deficiencies can be reversed or improved.  

Deficiencies in any of these Niacin Vitamin B 3, Thiamine Vitamin B 1, Cobalamine Vitamin B12, Pyridoxine Vitamin B6, and Vitamin C can cause peripheral neuropathy.

Best wishes!

[Geoff01]

Had nerve conduction tests (25% loss M + S) and vitamin deficiency tests. I take vitamin b complex, C and D regularly. 
 

but the damage was done in not being correctly diagnosed for 25 yrs. I understand that the nerve damage is permanent and I can feel it relentlessly getting worse by the year. I stay very active and I have cut out ALL cereals. I recently found that rice was causing a gut reaction (and therefore nerve damage) so I have stopped all rice and rice products as well. Tough living in Asia…!