Terrible Neurological Symptoms

[HectorConvector]

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?

[trents]

Have you had a follow-up endoscopy/biopsy to check for healing of the villi? Have you heard of refractory celiac disease?

[HectorConvector]

27 minutes ago, trents said:

Have you had a follow-up endoscopy/biopsy to check for healing of the villi? Have you heard of refractory celiac disease?

I had these done this year, in August, and the results were that everything was normal except for "mild inflammation" due to the Celiac disease. The results went into very little detail. 

I looked up refractory celiac disease.  I don't appear to have many of its main symptoms according to https://rarediseases.org/rare-diseases/refractory-celiac-disease/ such as anemia or weight loss (I've always been genetically thin) or gastro symptoms but maybe I just have some variant affecting my nerves. I should also add that my nerve symptoms include terrible body temperature control, and my skin goes extremely sticky when the nerve pain is very bad. First thought it was sticky sweat but turns out any water on my skin gets very sticky like something in the skin is producing abnormal stickiness. The body temp control problems and sticky skin all appeared with the sudden increase in nerve pain.

[knitty kitty]

@HectorConvector,

What is included in your diet?  Any medications you are currently using?

Have you been checked for vitamin and mineral deficiencies?

 

[Blue-Sky]

Have they checked your blood uric acid levels? Do salad (a low inflammation food) trigger the pain? 

(For some people foot pain and hand pain after eating certain foods is a possible symptom of gout. The immune system attacks uric acid deposits in the body. High, low or normal uric acid levels can occur during a gout attack. A rise or a drop in uric acid levels can trigger a gout attack.)

[knitty kitty]

"Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

Deficiency of some of the B vitamins (B12, thiamine, niacin, and B6) can cause neuropathy symptoms.

[HectorConvector]

9 hours ago, knitty kitty said:

@HectorConvector,

What is included in your diet?  Any medications you are currently using?

Have you been checked for vitamin and mineral deficiencies?

 

I eat fruit, fish, white meat like chicken, lean red meat (less than 15% fat), vegetables such as onions, broccoli, eat mushrooms, humus, pitta bread. Drink only water. No alcohol. I eat low sugar as a general rule. 

Last blood test showed normal vitamin B6/B12 levels. These had been low about 10 years ago and suggested as a reason for my then (mild) neuropathy but now I've had normal levels a while and worse pain than ever so it seems to be something else.

[HectorConvector]

6 hours ago, Blue_Sky said:

Have they checked your blood uric acid levels? Do salad (a low inflammation food) trigger the pain? 

(For some people foot pain and hand pain after eating certain foods is a possible symptom of gout. The immune system attacks uric acid deposits in the body. High, low or normal uric acid levels can occur during a gout attack. A rise or a drop in uric acid levels can trigger a gout attack.)

Haven't heard anything specifically about uric acid in my blood though I've had several blood tests. I'm not sure if these was checked for. I can request that such a test is performed. My dad has suffered with gout occasionally. 

The only difference I see is that his problems, and those I've read about involved swelling and skin issues, and inflammation around joints in the foot. My pain seems to be entirely nerve related, coming in short "paroxysms" of "electrical" stabbing and jolting pains, as well as nerve twitches that move my legs or toes by themselves. I don't have any joint inflammation, redness or swelling though.

4 minutes ago, HectorConvector said:

I eat fruit, fish, white meat like chicken, lean red meat (less than 15% fat), vegetables such as onions, broccoli, eat mushrooms, humus, pitta bread. Drink only water. No alcohol. I eat low sugar as a general rule. 

Last blood test showed normal vitamin B6/B12 levels. These had been low about 10 years ago and suggested as a reason for my then (mild) neuropathy but now I've had normal levels a while and worse pain than ever so it seems to be something else.

Just to clarify, that is gluten free pitta bread, of course. Couldn't find the edit feature on here, sorry.

[HectorConvector]

Just as an example of what I'm dealing with I've just had lunch which was a small snack of gluten-free pitta bread and spread on it and already had two violent jolts of burning nerve pain across random parts of my right foot. This will continue to get worse throughout the day. Every day.

[HectorConvector]

2 minutes ago, HectorConvector said:

Just as an example of what I'm dealing with I've just had lunch which was a small snack of gluten-free pitta bread and spread on it and already had two violent jolts of burning nerve pain across random parts of my right foot. This will continue to get worse throughout the day. Every day.

This will happen after I eat anything, btw, anything at all. Doesn't seem to matter what.

[Wheatwacked]

"However, people with a rare inherited disorder called pantothenate kinase-associated neurodegeneration can’t use pantothenic acid properly. This disorder can lead to symptoms of pantothenic acid deficiency....Pantothenic acid deficiency is very rare in the United States. Severe deficiency can cause numbness and burning of the hands and feet, headache, extreme tiredness, irritability, restlessness, sleeping problems, stomach pain, heartburn, diarrhea, nausea, vomiting, and loss of appetite.

However, people with a rare inherited disorder called pantothenate kinase-associated neurodegeneration can’t use pantothenic acid properly. This disorder can lead to symptoms of pantothenic acid deficiency.... "    https://ods.od.nih.gov/factsheets/PantothenicAcid-Consumer/

[knitty kitty]

1 hour ago, HectorConvector said:

I eat fruit, fish, white meat like chicken, lean red meat (less than 15% fat), vegetables such as onions, broccoli, eat mushrooms, humus, pitta bread. Drink only water. No alcohol. I eat low sugar as a general rule. 

Last blood test showed normal vitamin B6/B12 levels. These had been low about 10 years ago and suggested as a reason for my then (mild) neuropathy but now I've had normal levels a while and worse pain than ever so it seems to be something else.

I have had bad neuropathy when my thiamine and niacin were low.  Vitamin C deficiency can cause neuropathy, too.  

Have you thought about supplementing with a B Complex?  

Do you include Omega threes in your diet?  Healthy fats like in salmon, olive oil, flaxseed oil?  Vitamin E? 

Omega threes are used to make the myelin sheath around nerves.  The myelin sheath insulates the electrical impulses in the nerve.  Neuropathy occurs when this sheath becomes damaged.  

Thiamine is needed to turn fats, proteins and carbohydrates into energy for the body.  I would get really bad neuropathy after eating high carbohydrate things because my thiamine was low.  I started taking high dose Thiamine (600-1000 mgs in divided doses with each meal).  And I took magnesium because it works with thiamine.  And a B Complex, Vitamin D, Omega threes.....My neuropathy is gone.  

 

Edited November 21, 2021 by knitty kitty
Typo correction

[trents]

46 minutes ago, knitty kitty said:

 Do you include Omega threes in your diet?  Healthy fats like in salmon, olive oil, flaxseed oil?  Vitamin E? 

Omega threes are used to make the myelin sheath around nerves.  The myelin sheath insulates the electrical impulses in the nerve.  Neuropathy occurs when this sheath becomes damaged. 

This occurred to me as well when HectorConvector stated he only ate white, low fat meat and when the list of foods that followed that did not include fats or oils. Made me wonder if there was a deficiency of some fat soluble vitamin or vitamins. We have been sold a false narrative for many years by dietary science by being urged to eat a low fat high carb diet when the reverse is much healthier, as long as the dietary fat focuses mainly on unsaturated fats.

[HectorConvector]

1 hour ago, knitty kitty said:

I have had bad neuropathy when my thiamine and niacin were low.  Vitamin C deficiency can cause neuropathy, too.  

Have you thought about supplementing with a B Complex?  

Do you include Omega threes in your diet?  Healthy fats like in salmon, olive oil, flaxseed oil?  Vitamin E? 

Omega threes are used to make the myelin sheath around nerves.  The myelin sheath insulates the electrical impulses in the nerve.  Neuropathy occurs when this sheath becomes damaged.  

Thiamine is needed to turn fats, proteins and carbohydrates into energy for the body.  I would get really bad neuropathy after eating high carbohydrate things because my thiamine was low.  I started taking high dose Thiamine (600-1000 mgs in divided doses with each meal).  And I took magnesium because it works with thiamine.  And a B Complex, Vitamin D, Omega threes.....My neuropathy is gone.  

 

I do take supplemental vitamins (multivitamins) of all the B vitamins.

I probably didn't make my diet very clear as to what proportions of things I eat, I mostly do eat lot of healthy fats, like nuts and fish. I eat omega 3 fatty acids every day mostly in fish form, and eat low carb. I eat minced meat for dinner, usually a pound or so, but it's 15% fat meat. This is done with vegetables and plenty of oil. I have a vitamin D supplement, as I was found at various points to be deficient.

[HectorConvector]

32 minutes ago, trents said:

This occurred to me as well when HectorConvector stated he only ate white, low fat meat and when the list of foods that followed that did not include fats or oils. Made me wonder if there was a deficiency of some fat soluble vitamin or vitamins. We have been sold a false narrative for many years by dietary science by being urged to eat a low fat high carb diet when the reverse is much healthier, as long as the dietary fat focuses mainly on unsaturated fats.

I eat a low carb, high fat/protein diet. I eat white meat and red meat, but the red meat at the moment is 15% fat version, sorry for not making it clear. In fact my evening meals have no carbs except for vegetables, the rest is meat/oil, and I eat lots of things like peanut butter, walnuts and cashew nuts. I must have left those of the list which is a bit silly since I eat lots of them!  I eat mackerel of fatty fish on a daily basis. All the neuropathy has got a lot worse white eating this stuff, and what I eat doesn't appear to affect the symptoms - only the quantity.

[HectorConvector]

16 minutes ago, HectorConvector said:

I eat a low carb, high fat/protein diet. I eat white meat and red meat, but the red meat at the moment is 15% fat version, sorry for not making it clear. In fact my evening meals have no carbs except for vegetables, the rest is meat/oil, and I eat lots of things like peanut butter, walnuts and cashew nuts. I must have left those of the list which is a bit silly since I eat lots of them!  I eat mackerel of fatty fish on a daily basis. All the neuropathy has got a lot worse white eating this stuff, and what I eat doesn't appear to affect the symptoms - only the quantity.

My worst ever nerve pain happened in December 2019 when I was doing a high calorie diet and weight training. I was eating salmon with pesto on every night for dinner, and eating peanut butter sandwiches. Peanut butter in particular exacerbates the nerve pain a lot.  Fruit is a real trigger of the nerve pain especially berries. Stuff that's easy to digest seems overall less bothersome and of course eating less of anything.

Funnily enough, my energy levels are always excellent. I usually find I have too much rather than too little energy. The only problem is the nerve pain can be so bad after eating that I end up eating too little and losing weight. I am 6'4" and weigh 130lbs or so so I can't afford to lose weight.

[knitty kitty]

@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.

 

[HectorConvector]

2 hours ago, 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.

 

That is something I could do. I'm thinking of doing an elimination diet first. At the moment my diet doesn't contain a lot of foods high in histamine, but it has the fish, which is mostly mackerel, and I've stopped peanut butter for the time being. Getting more thiamine is something that I will try and also a B complex. The high energy in my case in that I am quite fit and energetic generally, especially if I can eat enough. But when I eat more the nerve pain gets out of control. I had dinner at 7PM last night and it's now midnight and my nerve pain is very bad in both feet with nerve twitches an shooting pains.  It's always terrible in the evening. 

[trents]

There are foods that are naturally high in histamines but you should also realize that all pickled foods are high in histamines and so are canned foods. Essentially any food that is preserved and sits in storage will increase in histamines with time. Just for your information as I'm not thinking this is your problem.

[Blue-Sky]

There are different types of autoimmune disorders that can attack the nerves in the body. Some these show some genetic overlap with celiac disease. So a diet that is helpful for MS for example may also be helpful for other types of nerve damage. Olive leaf extract or green tea compounds, oil of oregano, cysteine, NAC, theanine, glutamine, a high antioxidant diet or other plant compounds may reduce inflammation.

Zinc is the number 1 deficiency in active Celiac disease.  Zinc deficiency causes oxidative stress activates the immune system. That may be why seasonal allergies are more common if someone has Celiac disease. Zinc magnesium and selenium are useful supplements for thyroid problems. 

Soluble fiber that is somewhat fermented like for example psyllium husks (make sure they are labelled gluten free and without added ingredients) or cellulose may reduce the symptoms ibs. If it is related to inflammation in your gut this may help. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6041322/

[trents]

25 minutes ago, Blue_Sky said:

There are different types of autoimmune disorders that can attack the nerves in the body. Some these show some genetic overlap with celiac disease. So a diet that is helpful for MS for example may also be helpful for other types of nerve damage. Olive leaf extract or green tea compounds, oil of oregano, cysteine, NAC, theanine, glutamine, a high antioxidant diet or other plant compounds may reduce inflammation.

Zinc is the number 1 deficiency in active Celiac disease.  Zinc deficiency causes oxidative stress activates the immune system. That may be why seasonal allergies are more common if someone has Celiac disease. Zinc magnesium and selenium are useful supplements for thyroid problems. 

Soluble fiber that is somewhat fermented like for example psyllium husks (make sure they are labelled gluten free and without added ingredients) or cellulose may reduce the symptoms ibs. If it is related to inflammation in your gut this may help. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6041322/

Zinc is the number 1 deficiency in celiac disease. I thought it was B12.

[Blue-Sky]

1 hour ago, trents said:

Zinc is the number 1 deficiency in celiac disease. I thought it was B12.

I think it is zinc at the time of diagnosis, if I remember correctly,  but other ones like b12 are also common. I started a thread on zinc deficiency a while back with more information.

[knitty kitty]

3 hours ago, HectorConvector said:

That is something I could do. I'm thinking of doing an elimination diet first. At the moment my diet doesn't contain a lot of foods high in histamine, but it has the fish, which is mostly mackerel, and I've stopped peanut butter for the time being. Getting more thiamine is something that I will try and also a B complex. The high energy in my case in that I am quite fit and energetic generally, especially if I can eat enough. But when I eat more the nerve pain gets out of control. I had dinner at 7PM last night and it's now midnight and my nerve pain is very bad in both feet with nerve twitches an shooting pains.  It's always terrible in the evening. 

Get some magnesium citrate or magnesium glycinate to go with your extra thiamine and B Complex.  Magnesium helps relax muscles, so those nerve twitches should go away.  And magnesium works with thiamine.  Athletic people need more thiamine.  

Like @Blue_Sky said, Theanine in green, oolong and black tea can help relax nerves.  I like oolong tea when I want to relax.  Theanine is an amino acid, a natural occurring substance.  It's available as a supplement as well.  

Thiamine, magnesium and Theanine should help immensely.  Let us know what results you have.  

In the meantime, have you tried soaking your feet in Epsom salts (aka magnesium salts) and warm water at night?   Makes my feet feel better when my neuropathy is bad, too. 

Hope you feel better!   

 

[HectorConvector]

9 hours ago, knitty kitty said:

Get some magnesium citrate or magnesium glycinate to go with your extra thiamine and B Complex.  Magnesium helps relax muscles, so those nerve twitches should go away.  And magnesium works with thiamine.  Athletic people need more thiamine.  

Like @Blue_Sky said, Theanine in green, oolong and black tea can help relax nerves.  I like oolong tea when I want to relax.  Theanine is an amino acid, a natural occurring substance.  It's available as a supplement as well.  

Thiamine, magnesium and Theanine should help immensely.  Let us know what results you have.  

In the meantime, have you tried soaking your feet in Epsom salts (aka magnesium salts) and warm water at night?   Makes my feet feel better when my neuropathy is bad, too. 

Hope you feel better!   

 

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.

[Wheatwacked]

Time to stop guessing. Can you weigh and write down everything you eat for a day. I have a spreadsheet I created for myself that calculates the nutrients in my food and compares it to the RDA so I know exactly how much of what I need to supplement or eat more of every day compared to what the NIH says a healthy person needs. It is surprisingly different than what I started with two years ago.  I use the trackable nutrients from the National Nutrition Database.  This is the link to my results.   http://nutrientlog.doodlesnotes.net/ .

At one point I stopped eating and lost weight. Turned out to be too much salt.  Your story makes me think of Karen Carpenter.  With your limited diet there are for sure going to be multiple dificiencies. Post it or PM it. I will run the numbers for you.

Next, do you have your lab results, can you post them? Anything could be a clue. What is your last vitamin D plasma and how much are you supplementing D? B5 was a problem for prison camp detainees suffering malnutrition in World War II.