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Symptoms from low folate

cristiana

By cristiana
in Related Issues & Disorders

Recommended Posts

cristiana Veteran
cristiana
Posted

Hi everyone

After five years of my celiac diagnosis and being as compliant as I can with the diet I've just been tested - for the first time - for folate levels.  The minimum level with my lab is 4 - whatever 4 means, and that is what I am. What interests me is that my B12 is good now - 400, after lots of supplementing,  I always thought my tingling extremities and nerve pain in my face, plus odd aura type disturbances in my eyes, were to do with deficiencies of B12 and magnesium and now I'm wondering if my folate levels were also to blame.  I know they are OKish now but perhaps if I supplement with folate I might see some improvement. Has anyone had this and found supplementation helped?

Thanks!

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trents Grand Master
trents
Posted

It certainly wouldn't hurt anything to try it. As you know, B12 and folate are interdependent.

Question for you though, where does a person go to get tested for vitamin an mineral levels? Most primary care docs don't seem interested in this. Does insurance pay for it? If not, how much does it cost? Is this something a naturopath would be inclined to do?

pikakegirl Enthusiast
pikakegirl
Posted

Was diagnosed 10 yrs ago and developed severe Neuralgia making me bed ridden. Yes my folic acid was very low and taking l-methylfolate made pain worse, but just found out with a genetic blood test for MTHR my body can not convert folic acid and it is imperative I take the l-methylfolate. More research showed me the pain at first is normal flushing of toxins. Now I am up to 3000mcg daily and my pain is so much better I stopped taking 600mg Neurotin daily and my tachycardia is greatly improved... it made the tachycardia worse for the first few months so I adjusted the dose up and down. Please keep pushing your doctors to keep looking.

cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, trents said:

It certainly wouldn't hurt anything to try it. As you know, B12 and folate are interdependent.

Question for you though, where does a person go to get tested for vitamin an mineral levels? Most primary care docs don't seem interested in this. Does insurance pay for it? If not, how much does it cost? Is this something a naturopath would be inclined to do?

My GI runs my vitamin and mineral levels each year as well as testing my celiac antibodies.  It is part of my GI "well-check" and paid by my insurance.  As a result, I do not supplement with anything except for the rare probiotic taken when given a round of antibiotics (just recovering from a tooth infection).  I just make sure my foods are rich in nutrients.  I no longer have any deficiencies.  Supplementing can be helpful in the beginning when your gut is very damaged (or after a glutening), but is not always necessary to take them forever (my opinion based on my research).   

cristiana Veteran
cristiana
Posted
  • Author
3 hours ago, trents said:

It certainly wouldn't hurt anything to try it. As you know, B12 and folate are interdependent.

Question for you though, where does a person go to get tested for vitamin an mineral levels? Most primary care docs don't seem interested in this. Does insurance pay for it? If not, how much does it cost? Is this something a naturopath would be inclined to do?

Hi Trents - I think cyclinglady has answered your question - I imagine in the States where I think you might live it is to do with insurance.  Here in the UK I'd say it is hit and miss. On diagnosis I was told I had low iron and low normal B12.  Only my iron has been tracked properly - any B12 tests have been requested by me, and the levels are usually around the 200s.  I'm not sure why the sudden improvement - perhaps my gut has healed finally! But with regards to folate, I don't know why the consultant thought to test it specifically after all this time. I think it may just have been that I had mentioned I was getting tingling in my face and extremities.

cristiana Veteran
cristiana
Posted
  • Author
3 hours ago, pikakegirl said:

Was diagnosed 10 yrs ago and developed severe Neuralgia making me bed ridden. Yes my folic acid was very low and taking l-methylfolate made pain worse, but just found out with a genetic blood test for MTHR my body can not convert folic acid and it is imperative I take the l-methylfolate. More research showed me the pain at first is normal flushing of toxins. Now I am up to 3000mcg daily and my pain is so much better I stopped taking 600mg Neurotin daily and my tachycardia is greatly improved... it made the tachycardia worse for the first few months so I adjusted the dose up and down. Please keep pushing your doctors to keep looking.

Hi pikakegirl

That's really interesting that you had neuralgia as a result of low folate.  I'm so sorry you were bed ridden - how awful.  Did you also have trigeminal neuralgia?

My face pain was preceded by odd facial twitching around the time of diagnosis.  Some of those twitching hot spots on the right side of my face eventually progressed to tingling.  Now I get a bit of tingling, and bee sting type pain which appears out of the blue, but usually aggravated by cold wind. I try to supplement with B complex vitamins, magnesium and D - but what interests me is that in my B complex supplemention folate appears listed at 200 per cent of the daily requirement - whereas all the other B vitamins, including B12, are huge doses.  It has taken me so long to get my B12 to 400 with these huge doses, but my folate is still trailing behind to low normal levels - perhaps for this reason.  I shall try to eat more folate rich food and will supplement a bit more and it will be interesting to see what happens.

My visual disturbances may well be connected - there's a lot posted about scotomas being caused by folate deficiency.  I'll post if I get good results.

Thank you so much for sharing, and I hope your health continues to improve. 

Gemini Experienced
Gemini
Posted
23 hours ago, cristiana said:

Hi everyone

After five years of my celiac diagnosis and being as compliant as I can with the diet I've just been tested - for the first time - for folate levels.  The minimum level with my lab is 4 - whatever 4 means, and that is what I am. What interests me is that my B12 is good now - 400, after lots of supplementing,  I always thought my tingling extremities and nerve pain in my face, plus odd aura type disturbances in my eyes, were to do with deficiencies of B12 and magnesium and now I'm wondering if my folate levels were also to blame.  I know they are OKish now but perhaps if I supplement with folate I might see some improvement. Has anyone had this and found supplementation helped?

Thanks!

A 400 for B-12 is considered low here in the States.  They like to see optimal levels of over 650 in order to reduce symptoms and for general health. You might want to up your B-12 a bit more to raise it further. 

I have never supplemented with folate so, hopefully, someone else can answer that for you.

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Gemini Experienced
Gemini
Posted
19 hours ago, cristiana said:

Hi Trents - I think cyclinglady has answered your question - I imagine in the States where I think you might live it is to do with insurance.  Here in the UK I'd say it is hit and miss. On diagnosis I was told I had low iron and low normal B12.  Only my iron has been tracked properly - any B12 tests have been requested by me, and the levels are usually around the 200s.  I'm not sure why the sudden improvement - perhaps my gut has healed finally! But with regards to folate, I don't know why the consultant thought to test it specifically after all this time. I think it may just have been that I had mentioned I was getting tingling in my face and extremities.

Doctors in the States can and do test for nutritional deficiencies but testing is only as good as the doctor you have.  Some are more aggressive with testing and they tend to be more functional/natural medicine minded.  I think it's a crap shoot wherever you live so most people have to ask for it if it is not offered.

Sudden improvement is definitely a sign of healing!  My cholesterol was always in the bucket at around 125 pre-diagnosis and after for quite awhile.  After being gluten-free for 10 years, I had my cholesterol checked again and it had jumped to 200!  Thankfully, the jump came from my healthy cholesterol (HDL)....it went up 25 points. I think I am the only person who was happy that my cholesterol was that high.  I am now officially absorbing fats again!  ;)

cristiana Veteran
cristiana
Posted
  • Author
6 hours ago, Gemini said:

A 400 for B-12 is considered low here in the States.  They like to see optimal levels of over 650 in order to reduce symptoms and for general health. You might want to up your B-12 a bit more to raise it further. 

I have never supplemented with folate so, hopefully, someone else can answer that for you.

Yes, that's interesting Gemini about B12.  I heard it was at least 500 in Japan, I think, and it is interesting that 650 is considered good for general health in the States.  I was surprised when a doctor a few months ago told me my levels of 250 were good - much better than the general population in the UK! I remember thinking that was a very odd remark to make in view of what other countries perceive to be minimum levels as this falls well short. 

 

Ennis-TX Grand Master
Ennis-TX
Posted

I  been using a app for a few years now to help track down my issues. Just enter your symptoms, answer some questions and it gives you a idea what you might be low in and what foods you might need to eat. Open Original Shared Link

 

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