CONFIRMED FOLATE DEFICIENCIES - PLEASE POST HERE

[Rosebud Dairy]

At this point genetically, I know that I have a single C677T, and my doc and I are moving forward assuming that I am a "non-user" of AT A BEAR MINIMUM, folic acid, and possibly also folinic acid.

symptoms of folic acid "overload?"
raging IBS
inablility to tell when bladder is full - just can't feel it. - but this goes away when the other things go away--would fit into general neuropathy category
neuropathy - even down to depressed sense of smell
increased tinnitus? maybe
fatigue
slowed mental activity
return of ADD-type symptoms
not depressed exactly, but almost that way
less talking -- I just don't talk to people as much when I have folic acid overload
less sociable
poorer planning abilities
poorer logistics abilities

_______________
dietary clues - When I have done the Specific Carbohydrate Diet (very similar to GAPS diet), I noticed feeling better--lots better The first stage of SCD, I THINK, leaves out all processed foods (foods fortified in folic acid!), grains that may have been fortified in folic acid, and raw greens that may have folinic acid in them.

I have googled around for a definitive list of foods containing folinic or folic acids, but the lists I am finding are usually short ones. I have not been able to get research in lately, but does anyone already have a list taped up on their fridge or pantry of "FOODS TO AVOID"?

I am determined to figure out if my veggies are detrimental to me, as opposed to being merely neutral foods. I might have had a fortified breakfast, and just didn't realize it--corn grits.....Okay, they were not fortified, just whole grain corn ground up, but not soaked overnight.

Questions for our local scientists, statisticians, Ph.D. folks, engineers, and any other big thinker who is thinking about all this..........

1. Are you guys soon going to be ready to start looking at the 23andme. genetics for a group of us?

2. Who might be ready to systematically try a particular diet, such as the Specific Carbohydrate Diet along with the Being Right (Methyl B, etc.) Vitamin Folic Acid/Folinic Acid Excluding Vitamin Protocol ? I have thoughts on this, but I think one can see where this could be headed.

3. Are you interested in having a Registered Dietician develop a Stage 1 Diet, as a 1 week trial avoiding folic acid one week, and/or folinic acid foods the next week, or some such kind of thing, so we have something that can be posted and tried by folks who suspect that fortified foods and/or folinic acid foods may be detrimental to their health? My dietician has a professional and personal interest in this, and I am probably going to consult her anyway. I may as well get her permission to publicly post what she may develop. She may just analyze the SCD and or GAPS diets for low folic/folinic content, and go from there, so there is a ready made, well published diet that is confirmed low folic/folinic.

As always, I am happy to repost as a new thread, as I really want to get to the bottom of my own chronic fatigue problems, and do not want to take over the thread.

 

[soulfeast]

I have asked before and sorry to say, I still dont get it. My son is showing b12 and folate issues via organic acids test so this is getting even more personal! I want to understand if not to use folinic (which is in his Intramax, which has quite a few yasko supports in it as well). He takes Pure Encapsulations B Complex Plus which has metafolin in it at 400mcg and half an adult dose of INtramax which means 400mcg folinic. He also is showing to be glut intracellular defiecient via OAT test, as is my daughter who is not showing B12 or FA issues at least via OAT. I have tested her yasko genetics and she is alot "clearer" than I am. Some hetero snps but nothing like me.

Anyway.. lipo glut has "saved me at times from these awful feeling neuropathic? creepies and frayed nerve feelings.. nerves feel like they are buzzing and fraying, creeping and like mad. B12 has helped but does not address like the lipo gut. The lipo glut can also cause these feelings which in turn more lipo glut "cures."

When I was in mold contaminated house, I used lipo glut to stop these reactions. Out of the house, the lipo glut causes them more and then like I said, fixes the problems it caused, which makes me think toxins and detox? Maybe helping with oxidative stress?

So can I assume that I am not in category 3: intolerance of glutathione, NAC, and whey protein, and inability to utilize forms of B12 other than methyl- and adenosyl-B12?

I always have craved the jarrow m12 sublinguals and really do not have a craving for the perque hb12 at all though i take one a day. I cant imagine not taking the M12 for some reason and not a logical one I have figured out. I take the Hb12 because I am concerned if I dont, I will be missing something nutritionally, or its actions as a NO scavenger.. I dont crave ab12 either but take it since it balances the mb12.

Lastly, what does the folinic acid intolerance reaction feel like? How would you know?

Thank you.

 

[Freddd]

I have asked before and sorry to say, I still dont get it. My son is showing b12 and folate issues via organic acids test so this is getting even more personal! I want to understand if not to use folinic (which is in his Intramax, which has quite a few yasko supports in it as well). He takes Pure Encapsulations B Complex Plus which has metafolin in it at 400mcg and half an adult dose of INtramax which means 400mcg folinic. He also is showing to be glut intracellular defiecient via OAT test, as is my daughter who is not showing B12 or FA issues at least via OAT. I have tested her yasko genetics and she is alot "clearer" than I am. Some hetero snps but nothing like me.

Anyway.. lipo glut has "saved me at times from these awful feeling neuropathic? creepies and frayed nerve feelings.. nerves feel like they are buzzing and fraying, creeping and like mad. B12 has helped but does not address like the lipo gut. The lipo glut can also cause these feelings which in turn more lipo glut "cures."

When I was in mold contaminated house, I used lipo glut to stop these reactions. Out of the house, the lipo glut causes them more and then like I said, fixes the problems it caused, which makes me think toxins and detox? Maybe helping with oxidative stress?

So can I assume that I am not in category 3: intolerance of glutathione, NAC, and whey protein, and inability to utilize forms of B12 other than methyl- and adenosyl-B12?

I always have craved the jarrow m12 sublinguals and really do not have a craving for the perque hb12 at all though i take one a day. I cant imagine not taking the M12 for some reason and not a logical one I have figured out. I take the Hb12 because I am concerned if I dont, I will be missing something nutritionally, or its actions as a NO scavenger.. I dont crave ab12 either but take it since it balances the mb12.

Lastly, what does the folinic acid intolerance reaction feel like? How would you know?

Thank you.

Hi Soulfeast,

We need to fire up the way forward machine and see what we can find out about induced and paradoxical folate deficiecies about 100 years from now. We ar\e only now working on being able to identify it.

lipo glut has "saved me at times from these awful feeling neuropathic? creepies and frayed nerve feelings.. nerves feel like they are buzzing and fraying, creeping and like mad. B12 has helped but does not address like the lipo gut. The lipo glut can also cause these feelings which in turn more lipo glut "cures."


Glutathione did stop some of the neurological things for me, by making the nerves less functional and in some weeks, noticably more numb and damaged. What is typically called "glutathione detox reaction" is a fast and hard folate deficiency. Initially there is a quieting of the nervous system. Then an increase in inflammational pain, increase in allergic reactivity, increased hypersensitive responses, IBS, appearance of acne, skin problems, increased nauesa, increased mallaise.

I would not make ANY assumptions about whether or not you have a problem with glutathione etc until you are on ONLY metafolin (not folic or folinic) for month or two and have substantial improvement. As glutathione's effects can go on for weeks after the last dose, and if the folage deficiency symptoms are NOT reversed with large doses of methylfolate and mb12/adb12 the negative effects of glutathione can be totally invisible because the things it causes have never gone away. It can also block up to 100% of the effectiveness mb12, Metafolin and adb12.

 

[Freddd]

At this point genetically, I know that I have a single C677T, and my doc and I are moving forward assuming that I am a "non-user" of AT A BEAR MINIMUM, folic acid, and possibly also folinic acid.

symptoms of folic acid "overload?"
raging IBS
inablility to tell when bladder is full - just can't feel it. - but this goes away when the other things go away--would fit into general neuropathy category
neuropathy - even down to depressed sense of smell
increased tinnitus? maybe
fatigue
slowed mental activity
return of ADD-type symptoms
not depressed exactly, but almost that way
less talking -- I just don't talk to people as much when I have folic acid overload
less sociable
poorer planning abilities
poorer logistics abilities

_______________
dietary clues - When I have done the Specific Carbohydrate Diet (very similar to GAPS diet), I noticed feeling better--lots better The first stage of SCD, I THINK, leaves out all processed foods (foods fortified in folic acid!), grains that may have been fortified in folic acid, and raw greens that may have folinic acid in them.

I have googled around for a definitive list of foods containing folinic or folic acids, but the lists I am finding are usually short ones. I have not been able to get research in lately, but does anyone already have a list taped up on their fridge or pantry of "FOODS TO AVOID"?

I am determined to figure out if my veggies are detrimental to me, as opposed to being merely neutral foods. I might have had a fortified breakfast, and just didn't realize it--corn grits.....Okay, they were not fortified, just whole grain corn ground up, but not soaked overnight.

Questions for our local scientists, statisticians, Ph.D. folks, engineers, and any other big thinker who is thinking about all this..........

1. Are you guys soon going to be ready to start looking at the 23andme. genetics for a group of us?

2. Who might be ready to systematically try a particular diet, such as the Specific Carbohydrate Diet along with the Being Right (Methyl B, etc.) Vitamin Folic Acid/Folinic Acid Excluding Vitamin Protocol ? I have thoughts on this, but I think one can see where this could be headed.

3. Are you interested in having a Registered Dietician develop a Stage 1 Diet, as a 1 week trial avoiding folic acid one week, and/or folinic acid foods the next week, or some such kind of thing, so we have something that can be posted and tried by folks who suspect that fortified foods and/or folinic acid foods may be detrimental to their health? My dietician has a professional and personal interest in this, and I am probably going to consult her anyway. I may as well get her permission to publicly post what she may develop. She may just analyze the SCD and or GAPS diets for low folic/folinic content, and go from there, so there is a ready made, well published diet that is confirmed low folic/folinic.

As always, I am happy to repost as a new thread, as I really want to get to the bottom of my own chronic fatigue problems, and do not want to take over the thread.

Hi Rosebud Dairy,

Folic acid is not natural and not found in foods generally. Folinic acid is very widespread in vegetable source foods. Removing augmenting sourses of folic acid and folinic acid from vitamins and diet, and taking adequate doses of Metafolin, for me that looks like 3200mcg with each meal filling out to maybe 12,800mcg total a day. As folinic acid blocks a considerable amount more of methylfolate the saving grace appears to compete at absorbtion time rather then let it get in the body while eating only moderate amounts of veggie folate. The results are very apparrant if there is blockage going on


1. Are you guys soon going to be ready to start looking at the 23andme. genetics for a group of us?

The purpose of this thread is to hopefully gather a group of symptoms from people who have confirmed their folic acid and or folinic acid problem in causing paradoxical folate deficiencies, and from that group of symptoms develop a questionaire of the quickest to appear folate deficiency symptoms as they appear in paradoxical folate deficiencies or induced folate deficiencies, use those to help even more to identify and confirm such with an A-B trial and then compare those so identified 23andme and other genetics to those without such folate deficiencies also as verified by A-B test.

 

[gu3vara]

Removing augmenting sourses of folic acid and folinic acid (...) from diet.

I'm curious about this, what does you diet looks like? You eat only vegetables with low folinic? what about legumes, some are rich in it too., do you avoid them?

Thx!

 

[maddietod]

I went off all sources of folic/folinic acid 2 weeks ago, including fruit, vegetables, and legumes. I was already taking 2 Douglas Labs B-Complex a day, and I added one Solgar metafolin. On day 2, my brain came back on-line. I had these symptoms, listed by Rosebud Dairy above, 80% improved overnight:

fatigue
slowed mental activity
not depressed exactly, but almost that way
less talking -- I just don't talk to people as much when I have folic acid overload
less sociable
poorer planning abilities
poorer logistics abilities

On day 8 I challenged with one serving of boiled, drained kale (a relatively low-folate vegetable), 1/2 hour after taking the Solgar. I got sleepy, my brain got fuzzy, and my energy decreased a bit. A few hours later, my neck got extremely stiff. That night I got nauseous, my heart raced, and then I got a headache. I didn't think to take potassium, but the next morning I was back to my new normal.

 

[richvank]

I went off all sources of folic/folinic acid 2 weeks ago, including fruit, vegetables, and legumes. I was already taking 2 Douglas Labs B-Complex a day, and I added one Solgar metafolin. On day 2, my brain came back on-line. I had these symptoms, listed by Rosebud Dairy above, 80% improved overnight:

fatigue
slowed mental activity
not depressed exactly, but almost that way
less talking -- I just don't talk to people as much when I have folic acid overload
less sociable
poorer planning abilities
poorer logistics abilities

On day 8 I challenged with one serving of boiled, drained kale (a relatively low-folate vegetable), 1/2 hour after taking the Solgar. I got sleepy, my brain got fuzzy, and my energy decreased a bit. A few hours later, my neck got extremely stiff. That night I got nauseous, my heart raced, and then I got a headache. I didn't think to take potassium, but the next morning I was back to my new normal.

Very interesting! I would think that the kale had some potassium in it, too. But if it has folinic acid and you have an intolerance to folinic acid, potassium would not help.

Rich

 

[Athene]

Since I stopped taking my B-complex with folic acid, I've had a headache from hell - 4 days of relentless, extreme pain. Is this likely to be connected?

Oh Gawd, I'm being ignored, aren't I? That what the GP does too, when he doesn't know the answer.
The headache's gone after a week of agony, but I've got terrible IBS instead now. I'm heading off to sulk.

 

[maddietod]

Athene, it's not personal! When a bunch of us post all at once, and the page "turns over," sometimes posts get lost in the shuffle. Well, some of mine have. I just post again. Everybody here is volunteering, and people are astonishingly generous with their time and knowledge. It's a lot to keep up with.

I'm sorry about your symptoms, and I hope you've had a fabulous sulk.

Madie

 

[Athene]

Hi Madie!
The sulk did me good!!!!! I feel quite a bit better now

 

[Freddd]

Oh Gawd, I'm being ignored, aren't I? That what the GP does too, when he doesn't know the answer.
The headache's gone after a week of agony, but I've got terrible IBS instead now. I'm heading off to sulk.

Hi Athene,

Are you taking the Metafolin, mb12 and adb12, basics, omega3 oils ansd so on? With the IBS coming on quickly it looks like you very well might need more Metafolin.

 

[drex13]

Freddd,
Have you (or anyone else) tried this brand of methylfolate ? It comes in 10 mg caps. I found it on i-herb, haven't purchased it though.

http://www.iherb.com/Metabolic-Maintenance-5-MTHF-L-Methylfolate-10-mg-90-Capsules/38360?at=0

 

[Rosebud Dairy]

You have a headache?

Me too!! maybe this is a symptom that belongs in the thread.

I just took 1/4 tsp of Lite Salt with potassium substitute.

 

[Rosebud Dairy]

TRYING to confirm folate deficiencies -- But I am having trouble excluding foods that may have gotten into my gut AFTER the 3 hour half-life of my methylfolate.
skin splitting may be a symptom of folate deficiency for me.
Potassium drops may also be symptomatic, but this can be related to blood loss, too.

Now, I am looking back at those inadvertent exposures, and seeing the fatigue, muscle pain, and brain fog that followed! WOW!


Apparently, this patient has trouble reading her own nutrition labels -
kombucha - some type of folate
orange juice- some form of folate
fresh pineapple - some folate, but small

I had some "breakthrough" neuropathies while on-protocol, and could not figure it out.

But, for me, I am NOT sure if 3200 mcg before a meal gives me enough saving grace to compete with any folic/folinic I may consume during the meal OR
maybe I am still experiencing folic/folinic washout from the last inadvertent exposure.

Maddietodd, our symptoms are SO similar!!

Back to the drawing board on what foods I may be over-consuming, and to look again at why my special diet may have worked well.

 

[Rosebud Dairy]

symptom sorting--

Full-on nausea seems to be a potassium drop symptom

 

[rydra_wong]

I haven't been at this site in awhile and so maybe this is already explained, but does anyone have any idea why a natural substance like folinic seems to be would be bothersome? Is there something special about it maybe due to modern fertilizing methods or something? Because I cant imagine adopting a diet restricting out so many healthy foods... I do think my biggest problem is whatever of my genes affect folate as when I take a whopping amount of mfolate I feel like Vick's Vaporub in my brain - which I interpret as mondo better perfusion. But I am unwilling to swallow practically a whole bottle of mfolate every day so I am still looking for a better way. Any theories I missed? Thx.

 

[Freddd]

I haven't been at this site in awhile and so maybe this is already explained, but does anyone have any idea why a natural substance like folinic seems to be would be bothersome? Is there something special about it maybe due to modern fertilizing methods or something? Because I cant imagine adopting a diet restricting out so many healthy foods... I do think my biggest problem is whatever of my genes affect folate as when I take a whopping amount of mfolate I feel like Vick's Vaporub in my brain - which I interpret as mondo better perfusion. But I am unwilling to swallow practically a whole bottle of mfolate every day so I am still looking for a better way. Any theories I missed? Thx.

Hypothetically its becasue of genetic polymorphisms. This is whaqt we hope to arrive at after we find enough people who both have confirmed paradoxical folate deficiency of various types, ie folic and/or folinic and those who have confimed no problem and who have had their genes tested or will have them tested. Then we can maybe see what is fgoing on.

So maybe I came from a tribe that survived mainly on meat for lots of generations. In eating raw meat one even gets vitamin C.

I am not cutting out all those veggies, I'm learning how much and when to take the metafolin to prevent the deficiency.

 

[Sean]

Haven't read the thread. But just to add another one to the list who was mildly folate deficient (measured via a blood test). Started taking folic acid supplements, and levels came back up to normal. Didn't make any notcieable difference to my functional capacity.

 

[soulfeast]

Ok. I am willing to give this a try. I am sorry again to say I have not been following this thread for a long time and only managed to comprehend barely. How do you start? I have solgar metafolin and jarrow b12. I take 400 mcg of folinic and metafolin and 10 mg of mb12 and the source naturals Ab12 one a day.

my kids glut is showing low on organic acid markers test.. mine mid range which though the md said the marker can reveal intracellular issues and theirs are intracellular (dont know how this marker can tell that).. what about a need for glut supplementally?

My son is showing folate issues (however the oat manages to tell that) and low b12 but his MMA was low as well.. red blood cells too large. I think my MMA is low or lowish as well and red blood cells were creeping into a good range for a while and I think back up. What would cause this?

Rich and Freddd both.. if you see this post.. what do you think of the OAT for measuring these things?

And... what's the cost of a folinic "Deficiency" that would develope form taking metafolin only?

Thank you..

Hi Soulfeast,

We need to fire up the way forward machine and see what we can find out about induced and paradoxical folate deficiecies about 100 years from now. We ar\e only now working on being able to identify it.

lipo glut has "saved me at times from these awful feeling neuropathic? creepies and frayed nerve feelings.. nerves feel like they are buzzing and fraying, creeping and like mad. B12 has helped but does not address like the lipo gut. The lipo glut can also cause these feelings which in turn more lipo glut "cures."


Glutathione did stop some of the neurological things for me, by making the nerves less functional and in some weeks, noticably more numb and damaged. What is typically called "glutathione detox reaction" is a fast and hard folate deficiency. Initially there is a quieting of the nervous system. Then an increase in inflammational pain, increase in allergic reactivity, increased hypersensitive responses, IBS, appearance of acne, skin problems, increased nauesa, increased mallaise.

I would not make ANY assumptions about whether or not you have a problem with glutathione etc until you are on ONLY metafolin (not folic or folinic) for month or two and have substantial improvement. As glutathione's effects can go on for weeks after the last dose, and if the folage deficiency symptoms are NOT reversed with large doses of methylfolate and mb12/adb12 the negative effects of glutathione can be totally invisible because the things it causes have never gone away. It can also block up to 100% of the effectiveness mb12, Metafolin and adb12.

 

[soulfeast]

Fredd, do you have a sticky post with all this info?

Thank you..

Hypothetically its becasue of genetic polymorphisms. This is whaqt we hope to arrive at after we find enough people who both have confirmed paradoxical folate deficiency of various types, ie folic and/or folinic and those who have confimed no problem and who have had their genes tested or will have them tested. Then we can maybe see what is fgoing on.

So maybe I came from a tribe that survived mainly on meat for lots of generations. In eating raw meat one even gets vitamin C.

I am not cutting out all those veggies, I'm learning how much and when to take the metafolin to prevent the deficiency.