Healing Neurotoxicity

[basilicious]

I was recently DX'd (positive DGP-IgG but biopsy negative) and have experienced a number of neurological symptoms, including some that emerged 2-3 weeks after becoming celiac-safe with my GFD (which was about a month and a half after going strictly gluten-free but still being a little exposed to cc).

To rule out MS and some other things, I have been going through some follow-up testing, and so far everything, including the EMG that tested for nerve damage, has been normal. My neuro said that she thinks my symptoms, some of which have or are slowly resolving but which have really run the gamut (tingling, ear fullness, migraines, anxiety, blurry vision, lack of mental focus, jumpiness in my hands and feet, etc...), are due to neurotoxicity, not nerve damage. They did some additional vitamin testing, and my folate, B12 and thiamine were all normal.

Vitamin B1 (Thiamine), plasma: 39 (ref range: 9-44 nmol/L)

Mathylmalonic acid, serum: 163 (ref range: 87-318 nmol/L)

Vitamin B12, serum: 492 (ref range: 200-1100 pg/mL)

Folate, serum: >24.0 (ref range: >5.4 ng/mL)

(I had taken my daily vitamins, which included B supplements, about an hour and a half before they drew blood, but the doctor said that would not skew the results.)

So my question is this: Although I'm thankful not to have vitamin deficiencies or apparent nerve damage, neurotoxicity still sounds fairly ominous, so what can I do to feel better? My energy levels are still really in flux, and my afternoon slumps can be pretty bad. Neurotoxicity seems like such a broad term, and in the context of gluten, it's unclear whether it is more temporary and related to residual gluten in the system, or if it is more permanent. My current course of action is to foster general wellness: take supplements at reasonably low doses to support regeneration, eat whole foods, get a reasonable amount of exercise and try to be patient. But, if anyone has any more specific guidance about neurotoxicity, I'd really appreciate it. It's hard to know whether I am doing enough and/or have realistic expectations.

Thanks!!

[Bubba's Mom]

I was recently DX'd (positive DGP-IgG but biopsy negative) and have experienced a number of neurological symptoms, including some that emerged 2-3 weeks after becoming celiac-safe with my GFD (which was about a month and a half after going strictly gluten-free but still being a little exposed to cc).

To rule out MS and some other things, I have been going through some follow-up testing, and so far everything, including the EMG that tested for nerve damage, has been normal. My neuro said that she thinks my symptoms, some of which have or are slowly resolving but which have really run the gamut (tingling, ear fullness, migraines, anxiety, blurry vision, lack of mental focus, jumpiness in my hands and feet, etc...), are due to neurotoxicity, not nerve damage. They did some additional vitamin testing, and my folate, B12 and thiamine were all normal.

Vitamin B1 (Thiamine), plasma: 39 (ref range: 9-44 nmol/L)

Mathylmalonic acid, serum: 163 (ref range: 87-318 nmol/L)

Vitamin B12, serum: 492 (ref range: 200-1100 pg/mL)

Folate, serum: >24.0 (ref range: >5.4 ng/mL)

(I had taken my daily vitamins, which included B supplements, about an hour and a half before they drew blood, but the doctor said that would not skew the results.)

So my question is this: Although I'm thankful not to have vitamin deficiencies or apparent nerve damage, neurotoxicity still sounds fairly ominous, so what can I do to feel better? My energy levels are still really in flux, and my afternoon slumps can be pretty bad. Neurotoxicity seems like such a broad term, and in the context of gluten, it's unclear whether it is more temporary and related to residual gluten in the system, or if it is more permanent. My current course of action is to foster general wellness: take supplements at reasonably low doses to support regeneration, eat whole foods, get a reasonable amount of exercise and try to be patient. But, if anyone has any more specific guidance about neurotoxicity, I'd really appreciate it. It's hard to know whether I am doing enough and/or have realistic expectations.

Thanks!!

It sounds like you're doing the right things? Only thing I would add is...have you considered the possibilty of an additional food intolerance? Some of us get those symptoms from soy or dairy. They seem to be the most common offenders?

[basilicious]

It sounds like you're doing the right things? Only thing I would add is...have you considered the possibilty of an additional food intolerance? Some of us get those symptoms from soy or dairy. They seem to be the most common offenders?

Funny you should ask; the last two days I have had some tingling on the tip of my tongue shortly after eating. It lasts for about two hours. Yesterday it was after eating eggs and greek yogurt for breakfast. The day before, I'm not sure what caused it, because I was eating things (popcorn, quinoa pilaf with mushrooms/broccoli/onions) that I have eaten since then without an issue. I have not been disciplined about keeping a food journal, but with this new tingling it's probably a good idea.

[Skylark]

Eat healthy fats. Egg yolks, flax seed, nuts, olive oil, oily fish, maybe even lecithin from a health food store. Your nervous system needs fat to build myelin and recover. Omega-3 fats can be great for anxiety and limit omega-6 fats to try to get down to 2:1 omega-6:omega-3. Too much omega-6 causes inflammation and most Americans get crazy amounts of omega-6 from vegetable oil in processed foods.

I would also avoid aspartame and foods high in MSG like fast food, bouillon, soy sauce, miso, Parmesan cheese, and salty processed foods. There is no point eating excitotoxins while you are trying to heal nervous system damage.

I don't have bad afternoon slumps if I don't eat starchy foods for breakfast and lunch. I usually have eggs and fruit for breakfast and meat/veggies for lunch. I usually have some nuts and fruit/veg for a snack mid-afternoon when I get a little hungry but I'm not hypoglycemic at that point.

[Bubba's Mom]

Funny you should ask; the last two days I have had some tingling on the tip of my tongue shortly after eating. It lasts for about two hours. Yesterday it was after eating eggs and greek yogurt for breakfast. The day before, I'm not sure what caused it, because I was eating things (popcorn, quinoa pilaf with mushrooms/broccoli/onions) that I have eaten since then without an issue. I have not been disciplined about keeping a food journal, but with this new tingling it's probably a good idea.

The neuro issues are miserable. Unfortunately neuro damage is much slower to heal. I know your Dr. said it was neuro toxicity, but I think of both as being the same.

It might be a good idea to start a detailed food log? Write down what you eat, with rough amounts of how much you've eaten, and log any symptoms you feel. By having a way of looking back at what you've eaten and onset of symptoms it's easier to put the pieces of the puzzle together. Most food reactions are delayed, but the tingling tongue kind of concerns me, because that seems like more of an allergy symptom than an intolerance?

It took me quite a while to figure out that MSG gives me ear fullness followed by migraine, dairy makes me anxious and I get insomnia after eating it, and I get really crabby the next day too. Soy makes me nauseated. That's just an example of how your symptoms can be different for various foods, and different in when the symptom shows up.

Fats are important in your diet as Skylark says. Fish oil is great for the brain and coconut oil feeds the brain just like glucose does. It helps regulate blood sugar too. I use it like butter on cooked veggies, and to brown meats.

When you first posted your symptoms my thought jumped to B1 deficiency, but your Dr. tested that and it's at a good level. I don't know if taking it that close to when the blood was drawn skewed the the results or not? Just be aware that stress of any kind can make your body burn through B vitamins and keep taking your supplement.

Best wishes to you!

[basilicious]

Eat healthy fats. Egg yolks, flax seed, nuts, olive oil, oily fish, maybe even lecithin from a health food store. Your nervous system needs fat to build myelin and recover. Omega-3 fats can be great for anxiety and limit omega-6 fats to try to get down to 2:1 omega-6:omega-3. Too much omega-6 causes inflammation and most Americans get crazy amounts of omega-6 from vegetable oil in processed foods.

I would also avoid aspartame and foods high in MSG like fast food, bouillon, soy sauce, miso, Parmesan cheese, and salty processed foods. There is no point eating excitotoxins while you are trying to heal nervous system damage.

I don't have bad afternoon slumps if I don't eat starchy foods for breakfast and lunch. I usually have eggs and fruit for breakfast and meat/veggies for lunch. I usually have some nuts and fruit/veg for a snack mid-afternoon when I get a little hungry but I'm not hypoglycemic at that point.

This is great information, Skylark. Thank you. Omega-3s are even more integral to regeneration than I realized! And I will follow your other advice too re: blood sugar and the fats ratio. Maybe I'll start hardboiling a half dozen eggs each week and having them on hand as a good quick breakfast and/or snack.

The neuro issues are miserable. Unfortunately neuro damage is much slower to heal. I know your Dr. said it was neuro toxicity, but I think of both as being the same.

It might be a good idea to start a detailed food log? Write down what you eat, with rough amounts of how much you've eaten, and log any symptoms you feel. By having a way of looking back at what you've eaten and onset of symptoms it's easier to put the pieces of the puzzle together. Most food reactions are delayed, but the tingling tongue kind of concerns me, because that seems like more of an allergy symptom than an intolerance?

It took me quite a while to figure out that MSG gives me ear fullness followed by migraine, dairy makes me anxious and I get insomnia after eating it, and I get really crabby the next day too. Soy makes me nauseated. That's just an example of how your symptoms can be different for various foods, and different in when the symptom shows up.

Fats are important in your diet as Skylark says. Fish oil is great for the brain and coconut oil feeds the brain just like glucose does. It helps regulate blood sugar too. I use it like butter on cooked veggies, and to brown meats.

When you first posted your symptoms my thought jumped to B1 deficiency, but your Dr. tested that and it's at a good level. I don't know if taking it that close to when the blood was drawn skewed the the results or not? Just be aware that stress of any kind can make your body burn through B vitamins and keep taking your supplement.

Best wishes to you!

Bubba's Mom, thanks for this guidance about the food log and the fats. I'll make a more concerted effort to log everything. Also, just bought some coconut oil and am looking forward to using it! You had me at "Feeds the brain."

Thanks again to you both for sharing this info and your experiences!! This forum is such a boon to recovery, and I am so grateful for it.

[Bubba's Mom]

I usually make hard boiled eggs in batches of 6. They're so easy to grab and eat, or peel them and pop them into a sandwich baggie and take with you if you'll be away from home.

Sometimes I get hungry and can't think of what to make. I chomp down a HB egg and then I have time to think more clearly.

Want a scrambled egg in a hurry? Rub a thin coat of coconut oil in a heavy mug and break an egg into it. Add a dash of salt and whip it a bit with a fork and microwave for 30 seconds. Take it out and stir, then nuke it another 30 seconds.

If you want to add left over bits of mushrooms, ham, cheese, whatever, add it after the first 30 seconds of cooking. Easy peasy.

[rain]

I had tingling and numbness that actually got worse after I went gluten free and scared me for over a year. However at the 2 year mark it's a very mild symptom. I took sublingual b-12 which helped a lot in the beginning but after that I focused on diet and supplements. I have found the healing process to be very slow but steady. One thought is to take a look at your sugar and caffeine intake, both what you are consuming and when. I have found that I am much more sensitive after going gluten free. It was actually causing major mood swings until I changed how I eat sweet food. This might not be relevant at all but I found that I needed to add strength training to my exercise regimen to help with some of the physical symptoms like jumpiness and anxiety. In hindsight I think my muscle strength was coming back (I didn't know it had gone actually) but doing a weight class and yoga has calmed my body down a bit.

Neuro symptoms are tough!Good luck.

[frieze]

I was recently DX'd (positive DGP-IgG but biopsy negative) and have experienced a number of neurological symptoms, including some that emerged 2-3 weeks after becoming celiac-safe with my GFD (which was about a month and a half after going strictly gluten-free but still being a little exposed to cc).

To rule out MS and some other things, I have been going through some follow-up testing, and so far everything, including the EMG that tested for nerve damage, has been normal. My neuro said that she thinks my symptoms, some of which have or are slowly resolving but which have really run the gamut (tingling, ear fullness, migraines, anxiety, blurry vision, lack of mental focus, jumpiness in my hands and feet, etc...), are due to neurotoxicity, not nerve damage. They did some additional vitamin testing, and my folate, B12 and thiamine were all normal.

Vitamin B1 (Thiamine), plasma: 39 (ref range: 9-44 nmol/L)

Mathylmalonic acid, serum: 163 (ref range: 87-318 nmol/L)

Vitamin B12, serum: 492 (ref range: 200-1100 pg/mL)

Folate, serum: >24.0 (ref range: >5.4 ng/mL)

(I had taken my daily vitamins, which included B supplements, about an hour and a half before they drew blood, but the doctor said that would not skew the results.)

So my question is this: Although I'm thankful not to have vitamin deficiencies or apparent nerve damage, neurotoxicity still sounds fairly ominous, so what can I do to feel better? My energy levels are still really in flux, and my afternoon slumps can be pretty bad. Neurotoxicity seems like such a broad term, and in the context of gluten, it's unclear whether it is more temporary and related to residual gluten in the system, or if it is more permanent. My current course of action is to foster general wellness: take supplements at reasonably low doses to support regeneration, eat whole foods, get a reasonable amount of exercise and try to be patient. But, if anyone has any more specific guidance about neurotoxicity, I'd really appreciate it. It's hard to know whether I am doing enough and/or have realistic expectations.

Thanks!!

Your B12 is really borderline, if you are symptomatic, you really want it over 500. Your methylmalonic acid is good, so B12 may not be your problem, but taking 1000mcg a day on an empty stomache as a trial, might be a good idea.