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Low folate - but may not be able to supplement due to mcas. Ideas?

CFSTheBear

Senior Member
Messages
166
Recently had a general blood test come back from my GP which identified a folate deficiency.

With anything else, I’d simply buy some supplements of the vitamin/mineral and begin supplementing.

Unfortunately, folic acid, folate, vitamin b9 are all contraindicated in MCAS by the SIGHI mast cell disorder/histamine food list: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

I’m aware that a folate deficiency can be fairly serious if left unaddressed, any ideas for how I can improve my levels?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I have MCAS. My naturopathic doctor, who is quote competent, has felt that keeping my methylation moving along as quickly as possible is a GOOD thing for MCAS, nit a bad one.

In fact, my allergy symptoms had dramatically improved and I no longer had asthma due to being on an optimized methylation ptotovol, to the point I didn't believe I had MCAS. I do, but it was well under control until IVIG flared it up.

Folate is an extremely important part of our biochemistry. Methylation is as well, and our nervous system, endocrine system, immune system, detoxification, and DNA replication cannot function without it.

Ensuring you have adequate folate, along with cofactors like B12, B2, B6, magnesium, methionine, glycine, glutamine, n-acetyl-cysteine, B1, and molybdenum would be prudent. Vitamin C and B5 can also be helpful, as can quercetin and curcumin.
 

CFSTheBear

Senior Member
Messages
166
I mean...I disagree with nothing that you’ve said, but if you have mcas you’ll appreciate it’s rarely as simple as “need x, so supplement it”.

To quote a few of your examples:

Vitamin C - I react to it
NAC - I react to it

That’s why I wanted to get some suggestions regarding intake of folate without just taking it in a supplement, as my reactions are not pretty and severely impact my (already severe) illness.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I mean...I disagree with nothing that you’ve said, but if you have mcas you’ll appreciate it’s rarely as simple as “need x, so supplement it”.
Absolutely. I have found that, unfortunately, that taking MCAS meds is a necessity. My doctor has me on 3g ketotifen, 1.6g cromolyn sodium, 6g curcumin, 1g quercetin daily, as well as injectible Benadryl (I'm allergic to all oral forms) as I need it, and he would consider Gleevec if my problems were worse, which several of his patients have responded to.

Attached is a document by leading specialist Lawrence Afrin on drugs and supplements for MCAS.
To quote a few of your examples:

Vitamin C - I react to it
I learned that most vitamin C is corn-derived. And, though it's never shown up on an allergy test, corn and it's many derivatives consistently gives me hives, nausea, intestinal misery, and chest tightness. Seeking out fruit or cassava based vitamin C has helped, as my body us usually depleted of it. It would be counterproductive to avoid it.
NAC - I react to it
This is more complex. Likely, it is helping mobilize some toxins and you don't have all the othebr stuff in place to be able to deal with it, so you are reacting. All of the cofactors I mentioned above are used in the folate cycle, the methionine cycle, glutathione production and/or the transsulfuration pathway, which, coupled with adequate water and fiber intake and a well-functioning digestion/elimination system, you should e able to get rid of whatever you mobilize.

But, if you are missing key cofactors, you are likely to have unpleasant symptoms. Avoiding this unfortunate situstion and nutrients you think set you off is not a recipe for getting well...it is a recipe for staying sick and getting worse.

Having comprehensive nutritional testing like a Genova Diagnostics NutrEval to learn the status of all of these nutrient cofactors, and ideally working with a functional medicine doctor to be on a comprehensive supplement plan so you can properly metabolize environmental toxins can lead to vast improvement in MCAS and ME/CFS symptoms.
That’s why I wanted to get some suggestions regarding intake of folate without just taking it in a supplement, as my reactions are not pretty and severely impact my (already severe) illness.
If you want to take folate not as a supplement, then you will want to eat lots of leafy, dark green vegetables, where folate comes from naturally. Many of us, though, have trouble assimilating enough folate from food, so IV, injectible, and oral supplementation can be a big help.

But, relying on the internet for suggestions for a severe illness, when you likely have a complex situation that someone knowledgeable should be helping you with, based on your labs and your specific situation, may not be the wisest thing to do.

Folate and vitamin C are pretty important nutrients, so figuring out how to overcome obstacles in getting them into you is critical to finfing a path to wellness.
 

Attachments

  • Afrin Drugs for MCAS.pdf
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CFSTheBear

Senior Member
Messages
166
Absolutely. I have found that, unfortunately, that taking MCAS meds is a necessity. My doctor has me on 3g ketotifen, 1.6g cromolyn sodium, 6g curcumin, 1g quercetin daily, as well as injectible Benadryl (I'm allergic to all oral forms) as I need it, and he would consider Gleevec if my problems were worse, which several of his patients have responded to.

Attached is a document by leading specialist Lawrence Afrin on drugs and supplements for MCAS.

I learned that most vitamin C is corn-derived. And, though it's never shown up on an allergy test, corn and it's many derivatives consistently gives me hives, nausea, intestinal misery, and chest tightness. Seeking out fruit or cassava based vitamin C has helped, as my body us usually depleted of it. It would be counterproductive to avoid it.

This is more complex. Likely, it is helping mobilize some toxins and you don't have all the othebr stuff in place to be able to deal with it, so you are reacting. All of the cofactors I mentioned above are used in the folate cycle, the methionine cycle, glutathione production and/or the transsulfuration pathway, which, coupled with adequate water and fiber intake and a well-functioning digestion/elimination system, you should e able to get rid of whatever you mobilize.

But, if you are missing key cofactors, you are likely to have unpleasant symptoms. Avoiding this unfortunate situstion and nutrients you think set you off is not a recipe for getting well...it is a recipe for staying sick and getting worse.

Having comprehensive nutritional testing like a Genova Diagnostics NutrEval to learn the status of all of these nutrient cofactors, and ideally working with a functional medicine doctor to be on a comprehensive supplement plan so you can properly metabolize environmental toxins can lead to vast improvement in MCAS and ME/CFS symptoms.

If you want to take folate not as a supplement, then you will want to eat lots of leafy, dark green vegetables, where folate comes from naturally. Many of us, though, have trouble assimilating enough folate from food, so IV, injectible, and oral supplementation can be a big help.

But, relying on the internet for suggestions for a severe illness, when you likely have a complex situation that someone knowledgeable should be helping you with, based on your labs and your specific situation, may not be the wisest thing to do.

Folate and vitamin C are pretty important nutrients, so figuring out how to overcome obstacles in getting them into you is critical to finfing a path to wellness.


Thanks - yeah I’d been meaning to seek out some non corn-based vitamin c to see if that was the issue and if this would help. I already take quercetin and had to rotate through a couple of different preparations before I found one that agrees with me.

I do really appreciate the advice - however I would just say that some of the tests and things you talk about, like finding a doctor who can help organise care etc, is no easy feat - either on a financial level or a practical level.

While I would love to find someone who can help help me with that, and someone who is affordable, unfortunately I will still have to ask other patients for anecdotal advice, as I’m sure you’ll appreciate.
 

Moof

Senior Member
Messages
778
Location
UK
All I can add is that I have MCAS, but am fine with methylfolate. I take it because I need B12 injections, which won't work without adequate folate. I've never had any significant reaction, though I don't take megadoses – just a small amount a couple of times a week, to top up what I get from my diet.
 

CFSTheBear

Senior Member
Messages
166
All I can add is that I have MCAS, but am fine with methylfolate. I take it because I need B12 injections, which won't work without adequate folate. I've never had any significant reaction, though I don't take megadoses – just a small amount a couple of times a week, to top up what I get from my diet.

Ah - that’s reassuring - would you be able to share what brand etc you use?
 

Moof

Senior Member
Messages
778
Location
UK
Ah - that’s reassuring - would you be able to share what brand etc you use?

It's Life Extension Optimised Folate 1000mcg, which gives you about 250% of RDA. I often only take half a tablet, unless I haven't eaten many folate-containing vegetables in the previous days, in which case I'll take a whole one.

Obviously I don't know how you'd react to it, but it might be worth breaking up a tablet with a couple of spoons and starting with just a small fragment, to see how well you tolerate it? Hopefully you'll be OK and will be able to work up from there. Fingers crossed, anyway!