Folate/Folic Acid Intolerance & MTHFR

[Lrn5]

HI All, And thank you for any input. Here's my current state.

MTHFR A1298C ++
Genetic testing also shows methylation and detox issues
Diagnosed SIBO
Diagnosed Leaky Gut
High Homocysteine
Histamine intolerant (wrong foods make me feel like I'm dying)
Extreme Folate/Folic Acid intolerant (even fortified cereal makes me feel HORRIBLE next day)
I am Non Celiac Gluten Sensitive (and am gluten free)

As long as I don't eat gluten, histamine or folate/folic acid foods I can "get by" with feeling better. Functional doc is starting me with glutathione supplements along with others for SIBO. Just tested Methylmalonic Acid trying to figure out if I am B12 or folate deficient although we think it is a folate issue. Then will decide what kind of folate supplement to try such as L-5 mthf.

How can someone be folate deficient and folate intolerant at the same time? I don't understand! I have been so unwell for 2 years and finally realized I needed functional doc to help me unravel all this!

Any other thoughts for someone in my situation? I am so sick of feeling so sick and all standard doc reports perfect.

 

[Waverunner]

This is a super complicated topic for me. Whenever I take supplements with folic acid and other B vitamins, I get extreme atopic eczema and feel horrible. However, small amounts seem to be OK. I was also folate deficient but got it back into the low normal range with diet. I'm OK with this but I won't take any folate supplements including L-5 anymore.

 

[drmullin30]

@Lrn5, are you also intolerant to l-5-methyltetrahydrofolate?

There is a HUGE difference between folic acid, folinic acid, folate, methylfolate, folinate and any other type of vitamin B9 you can think of. They all have different functions and effects.

I have the same reaction as you to synthetic folic acid of the type found in fortified grains and cheap b-vitamins but I take up to 45 mg per day of l-5-methyltetrahydrofolate. Along with a many many other supplements to aid in my faulty methylation.

Also, folate will not work without b12. It's necessary to pair them in order to have folate penetrate and function inside the cell. You may not need to supplement with b12 but this is highly unlikely since you have high homocysteine. B12, like folate comes in several types including, methylcobalamin, hydroxocobalamin, cyanocobalamin and adenosylcobalamin. You will need to take the right form for you. Cyanocobalamin is mainly useless for most people but the other three are therapeutically active.

I am also Celiac and share your MTHFR 1298 SNP among dozens of others that impact my methyl cycle function, detoxification and contribute to my CFS.

From my experience, if you are where I was ten years ago, you are severely undermethylated and will require significant methylation support and detoxification. I used a complete nutrigenomic program to heal.

I also strongly suggest you get your oxalate status checked. Methylation dysfunction can lead to hyperoxaluria and a plethora of health issues including all of your digestion issues etc. I have solved my SIBO, leaky gut, thyroid problems, acne and many other health issues by going low oxalate.

Doctors have been totally useless (in fact at times even harmful) in my journey to health but I live in Canada and very few doctors here even acknowledge methylation, CFS or oxalates as drivers of health issues.

One more note, I advise caution with glutathione as it can cause problems if you have mercury toxicity or issues around b12 metabolism. See here: https://cutlersuccessstories.weebly.com/what-not-to-do.html

I hope this helps and I wish you good health!

 

[Lrn5]

This is a super complicated topic for me. Whenever I take supplements with folic acid and other B vitamins, I get extreme atopic eczema and feel horrible. However, small amounts seem to be OK. I was also folate deficient but got it back into the low normal range with diet. I'm OK with this but I won't take any folate supplements including L-5 anymore.

Good for you getting your folate back in range! This is such a complicated struggle!

 

[Lrn5]

@Lrn5, are you also intolerant to l-5-methyltetrahydrofolate?

There is a HUGE difference between folic acid, folinic acid, folate, methylfolate, folinate and any other type of vitamin B9 you can think of. They all have different functions and effects.

I have the same reaction as you to synthetic folic acid of the type found in fortified grains and cheap b-vitamins but I take up to 45 mg per day of l-5-methyltetrahydrofolate. Along with a many many other supplements to aid in my faulty methylation.

Also, folate will not work without b12. It's necessary to pair them in order to have folate penetrate and function inside the cell. You may not need to supplement with b12 but this is highly unlikely since you have high homocysteine. B12, like folate comes in several types including, methylcobalamin, hydroxocobalamin, cyanocobalamin and adenosylcobalamin. You will need to take the right form for you. Cyanocobalamin is mainly useless for most people but the other three are therapeutically active.

I am also Celiac and share your MTHFR 1298 SNP among dozens of others that impact my methyl cycle function, detoxification and contribute to my CFS.

From my experience, if you are where I was ten years ago, you are severely undermethylated and will require significant methylation support and detoxification. I used a complete nutrigenomic program to heal.

I also strongly suggest you get your oxalate status checked. Methylation dysfunction can lead to hyperoxaluria and a plethora of health issues including all of your digestion issues etc. I have solved my SIBO, leaky gut, thyroid problems, acne and many other health issues by going low oxalate.

Doctors have been totally useless (in fact at times even harmful) in my journey to health but I live in Canada and very few doctors here even acknowledge methylation, CFS or oxalates as drivers of health issues.

One more note, I advise caution with glutathione as it can cause problems if you have mercury toxicity or issues around b12 metabolism. See here: https://cutlersuccessstories.weebly.com/what-not-to-do.html

I hope this helps and I wish you good health!

 

[Lrn5]

DrMullin30 - THANK YOU for this valuable information. I am in the US and found a good functional doc out of Michigan who has very quickly helped me with testing and helping to get me on right path. (But yes several standard/traditional medical docs in the US have done more damage than good over the last 2 years before I realized I had to go functional/integrative.)

I've re-read your email 3 times trying to take it all in as I try to learn and understand what I need. I meet again with my doc next week and want to have a better understanding of all this so I know what to ask and what to watch out for! Thank you for the glutathione warning - well noted and I will approach that with great care. Also noted about the B12 + folate.

Can I ask what nutrigenomic program did you use? And - is the Oxalate a blood test?

Yes I most likely am where you were - extremely undermethylating - and I am determined to stay strong and figure out what my body needs to repair. Thank you again - beyond comforting to hear from someone like you.

 

[nerd]

What you describe is not uncommon with CFS/ME. If I assume that you have the same methylation blockage as many of us, an overreaction to folate derivatives is mediated by the amplification of the existing cysteine deficiency. A supplementation of SAMe and NAC would compensate for this. The folate cycle is not blocking the methylation cycle either way unless your biopterin cycle is somehow blocked as well. A genetic predisposition could cause this, but it's very uncommon.

 

[Lrn5]

Oh and - I forgot - I don't know yet if I am intolerant to the l-5-methyltetrahydrofolate . I am working with doc next week to figure out what/how I am going to try.

 

[Lrn5]

What you describe is not uncommon with CFS/ME. If I assume that you have the same methylation blockage as many of us, an overreaction to folate derivatives is mediated by the amplification of the existing cysteine deficiency. A supplementation of SAMe and NAC would compensate for this.

Thank you so much for your input. I've added this to my notes and will discuss at doc appt next week. I've seen 30 docs in the last 3 years and no one has mentioned CFS/ME. I'm doing something wrong . Yes will discuss SAMe and NAC with doc.

 

[nerd]

Thank you so much for your input. I've added this to my notes and will discuss at doc appt next week. I've seen 30 docs in the last 3 years and no one has mentioned CFS/ME. I'm doing something wrong . Yes will discuss SAMe and NAC with doc.

The best way to verify this is by measuring all metabolites of the methylation and folate cycle. If your folate cycle is blocked, this could also explain the "deficiency" of either one because only one of the two folates was measured, either inactive folate or active folate (5-MTHF).

 

[drmullin30]

Can I ask what nutrigenomic program did you use? And - is the Oxalate a blood test?

Oxalates are tested via urine but oxalates are excreted intermittently so you can get false negatives. Here are a couple of links to get you started.
https://mthfrsupport.com/2018/03/understanding-sulfation-and-oxalate/
https://sallyknorton.com/oxalate-science/
https://www.westonaprice.org/health...-of-oxalates-in-autism-and-chronic-disorders/

My nutrigenomics program has evolved as my knowledge and symptoms have evolved.

I'm now using a genetically tailored version of the advanced methylation protocol or Freddd protocol and I've never been healthier in my life.

Over the last ten years I've used variations on William Walsh, Amy Yasko, Ben Lynch and other methylation doctors but none of them were quite right.

I also did high iodine protocols for a couple of years to fix my thyroid and help with heavy metal toxicity. Methylation and thyroid function are interdependent so it's usually necessary to add iodine to the protocol. Iodine is also necessary for proper B12 utilization.

The important thing, is that I tailored these programs to my specific set of SNPs which is what I believe most people need to do. These kinds of disease are very individual and highly dependent on individual genetics and epi-genetics which is why there's no one size fits all treatment for CFS/ME or autism.

Different SNPs can create treatment conflicts and cause problems with any of the above protocols. I know from experience because I couldn't get any treatment to work right until I had my genetic profile to guide me.

 

[Lrn5]

Oxalates are tested via urine but oxalates are excreted intermittently so you can get false negatives. Here are a couple of links to get you started.
https://mthfrsupport.com/2018/03/understanding-sulfation-and-oxalate/
https://sallyknorton.com/oxalate-science/
https://www.westonaprice.org/health...-of-oxalates-in-autism-and-chronic-disorders/

My nutrigenomics program has evolved as my knowledge and symptoms have evolved.

I'm now using a genetically tailored version of the advanced methylation protocol or Freddd protocol and I've never been healthier in my life.

Over the last ten years I've used variations on William Walsh, Amy Yasko, Ben Lynch and other methylation doctors but none of them were quite right.

I also did high iodine protocols for a couple of years to fix my thyroid and help with heavy metal toxicity. Methylation and thyroid function are interdependent so it's usually necessary to add iodine to the protocol. Iodine is also necessary for proper B12 utilization.

The important thing, is that I tailored these programs to my specific set of SNPs which is what I believe most people need to do. These kinds of disease are very individual and highly dependent on individual genetics and epi-genetics which is why there's no one size fits all treatment for CFS/ME or autism.

Different SNPs can create treatment conflicts and cause problems with any of the above protocols. I know from experience because I couldn't get any treatment to work right until I had my genetic profile to guide me.

Dr. Mullin30 - yes yes all so very helpful. I have a steep learning curve on figuring all this out - you sound like a pro! I feel like I am finally on the right path and it is a matter of putting puzzle pieces together. I am so grateful to you for the info you've provided me in these two posts. Am reading Dirty Genes and just this morning found a highly rated doc near me who studied under Dr. Lynch so as I learn I will have guidance. Again, you are so kind to share your knowledge.

 

[drmullin30]

@Lrn5 I'm not a doctor it's just the way my initials work out. I'm going to have to change that it causes confusion. I'm a systems safety and reliability engineer so I approach this problem from a holistic dynamic system viewpoint.

You are quite welcome and since you are reading Dirty Genes I've attached Yasko's book which is a good read although some of the stuff is probably old.

 

[Lrn5]

@Lrn5 I'm not a doctor it's just the way my initials work out. I'm going to have to change that it causes confusion. I'm a systems safety and reliability engineer so I approach this problem from a holistic dynamic system viewpoint.

You are quite welcome and since you are reading Dirty Genes I've attached Yasko's book which is a good read although some of the stuff is probably old.

LOL ok - well you sound like a doctor! And very obvious you are very smart about this stuff! I am just getting started and after 3 years of no answers and docs telling me there is nothing wrong I am determined to learn all I need to to take care of myself the right way. I will read the Yasko book too! Thanks!

 

[Lrn5]

@Lrn5 I'm not a doctor it's just the way my initials work out. I'm going to have to change that it causes confusion. I'm a systems safety and reliability engineer so I approach this problem from a holistic dynamic system viewpoint.

You are quite welcome and since you are reading Dirty Genes I've attached Yasko's book which is a good read although some of the stuff is probably old.

And DRM - the Yasko book is directed to autism, but I am guessing it applies to the rest of us who have these undermethylation/detox MTHFR gene problems, right??

 

[drmullin30]

And DRM - the Yasko book is directed to autism, but I am guessing it applies to the rest of us who have these undermethylation/detox MTHFR gene problems, right??

Yes I feel it applies. I have symptoms of both CFS and Asperger's so maybe this was more applicable to me than someone with strictly CFS/ME symptoms but both diseases are definitely linked with methylation, genetics and epigenetics.

In my humble opinion, CFS and Autism are diseases on the same spectrum of genetic and epigenetic diseases. There are likely other types of heart disease, cancer and other chronic disease that are also related to these mechanisms.