Thank you for the comments @linusbert My opinion >> MCAS is related to broken methylation cycles and/or liver congestion. IMO, these 2 are closely associated and influence one another. Detoxification strategies got me over the barriers.
Vit. D causing allergies to flareup
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linusbert
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i really would like to try detox but its not possible for me because every detox agent is somewhat plant extracted. despite bentonite, but i dont trust this either, because those absorbens are as safe as the stuff they caught on the way. good chances is they were from china, than they got all kind of possible toxins. a lot of reviews i read on those describe how their liver enzymes actually got worse. so i guess they were not absorbing but the other way, resorbing the bad shit the bentonie caught along the way.
For me some of the natural ways to get vitamins like eating food or sun-bathing(for vitamin D) is problematic, maybe not as problematic as supplements but I still have similar issues, for example:
- vitamin C(in the form of ascorbic acid) gives me diarrhea and other gastro-intestinal problems, but than again so does natural alternatives like lemons or oranges; today I've tried a low dose of ascorbic acid, about 20mg(I've split up in 4 pieces a 80mg lozenge) and within 1h my stomach started to rumble, also my nose become stuffed, I had to go to the toilet after that
- vitamin D in many forms like sublingual, liquid droplets, pills/tablets, it doesn't matter if it's D3 or D2 and also production method doesn't matter(can also be baker's yiest); all cause my body to be more reactive to allergens: if I take vitamin D and afterwards I smell something chemical I will get nose/throat inflammation, headaches, dizziness, a feeling I'm about to faint(probably blood pressure drops), also muscle twitches/fasciculations, back pain; on the other hand vitamin D from the sun also causes problems but less so in my nose/throat and more in other areas like cardiac arrhythmias, back pain, frequent muscle twitches/fasciculations/cramps, back pain; though I'm not 100% sure at the moment, there seems to be a connection between vitamin D and my gastro-intestinal issues: staying indoors, with no sun exposure makes my stomach better but it's not immediate effect but longer term, basically periods when I do not go outside at all I get less diarrhea; Also pills that block absorption of fat soluble vitamins (like A,D,E,K) have an immediate effect on my diarrhea, though, again, not really sure if it's from blocking vitamin D or something else.
- folate in any form like Methyl-Folate, Folinic Acid, Folic Acid in pills/tabletes will create urinary problems for me, but so does eating lettuce or green salad
I've tried Glutathione and found some interesting effects on my vision: my visual field seemed expanded, I could notice movement better, objects seemed more 3D than usual; unfortunatly there was also some slight heart pain and dilated veins so I've stopped taking it. Did not notice any improvement on my allergies or gut.
Again I've had a wierd reaction to activated charcoal: lots of intestinal gas and urinary problems. No idea why.
Have you thought about having too much of cofactors for vitamin D in your system, stuff like: Magnesium, Boron, Zinc, Selenium, Vitamin K etc ?
Basically I've reached these conclusions:
- my allergies and gut issues are all related to histamine and mast cells
- somehow active vitamin D is making the mast cells more reactive, they release more histamine
- the more vitamin D I take, in any form, makes matters worse and so do the cofactors
I started out this discussion because I thought that my body does not accept vitamin D because of missing cofactors, now I'm thinking taking cofactors was a big mistake as supplementing these cofactors has amplified my allergies. Too much active vitamin D is making my allergies worse and active vitamin D is obtained from inactive vitamin D and cofactors. Now, because of my blood test, I know for sure I was and probably still am Magnesium deficient, but this was also a limiting step in producing active vitamin D: the more magnesium I supplement right now, the more active vitamin D I will have and my allergies will get worse.
Is this too far fetched?
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linusbert
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did you try sodiumascorbate? i can take those gram-wise but normal ascorbic acid gives me diarrhea at mini dosages.
how long after taking the D this happens?
some people including myself react to sun light or radiation. when you get sunlight through a UV blocking glas , do you get same symptoms? if yes, its not the vitamin D.
can it be that you are sensible to fats in general? you might try TUDCA with those, might improve tolerance for fats. also B2 is very important for fats.
i have not, my vitamins of everything are low. boron in hairmineral analysis was actually not measurable... everything else is low normal... maybe i need to take boron??
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linusbert
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how is your retinol? did you try to increase retinol intake with D intake. you might play around with ratios... increase retinol to D ratio. beta carotene isnt much use.
try 50-100g liver ONCE and see if this does anything for you.
also try to up potassium. D really sucks on it.
maybe even iron?
i do not believe (without any scientific reasonable explanation) that cofactors might cause this. what i actually believe is that one cofactor is still missing. if you give cofactors in the D pathway and D isnt the limiting factor you might aggravate another cofactor deficiency.
before i was reacting this bad with allergies/mcas , vitamin D actually improved my allergies substantially and also inflammation and others just the next day of taking just 5000 iu. my cough and asthma also improved. but at some point it stopped working.
so i guess something is missing now.
but the thing is, it can be ANYTHING , and multiple things! for example copper and iron also are somewhat required, i have a copper deficiency which is somehow not responding to anything, except with nausea and vertigo.
it doesnt even have to be a vitamin or mineral, it could be a amino acid as well... its so disgusting figuring this out.
There's one more information I have recently found out: I have a DAO mutation that leads to poor histamine breakdown due to decreased DAO activity. It's rs10156191 and I have the T/T variant which is the worst for this gene. DAO seems to be mostly expressed in the gut and it's role is to prevent Histamine from entering the blood stream. Also found out that some bacteria in the gut can produce histamine and poor DAO activity could be an explanation for my high Calprotectin(extensive inflammation in the gut) and resulting diarrhea. The good news there is an easy solution: DAO enzyme supplement made from pig kidney. It's a little on the expensive side and I haven't ordered it yet.
No, I have not tried it, but it's ordered and arriving today(hopefully!). Since it's not that acidic it should be easier on my stomach, but unfortunately I've come across the information that vitamin C(in all forms) is a DAO inhibitor. This could still make my diarrhea worse because of poor DAO, I will have to test and see.
After taking vitamin D my allergies are worse for a few days, the exact number varies depending on what quantity I took.
I mostly stay indoors(about 99% of time) and if I do not open the window my allergies are manageable. However when I go outside, problems start almost immediately(mast cells are said to be the fastest to react to stimuli, in a matter of seconds).
Indeed I am! Fats give me gas and make my diarrhea worse, hopefully it's not from facilitating vitamin D absorption but something else. I have ordered a B2 supplement and I will test to see if it makes a difference. Thanks!
Worth a try
As far as I've read, retinol is involved in vitamin D metabolism after calcitriol binds to VDR. Since I have upper-normal calcitriol and I observe a reaction in my immune system(allergies) I would guess I have enough retinol. I've actually supplemented with vitamin A along with the cofactors, but don't know if it was retinol or beta carotene as it is not specified on the packaging. Beta carotene is converted into retinol at varing ratios depending on BCO1 gene. As I have my complete genome from Nebula genomics I will check if I have any mutation in that gene that causes low retinol conversion, otherwise it's a dead end because supplementing with any vitamin A yields retinol. I will let you know if I find anything.
I tryed Potassium in the past, I get into trouble with urinary issues(dribbling, urgency) when I supplement it. Don't know why and haven't managed to solve it, my latest theory is it's somehow related to high Histamine as I've seen a study linking mast cells with bladder issues.
I have high levels of iron and ferritin in my blood. This is in spite of very high Hepcidin (a hormone that is suppose to block iron absorption), it's sort of a mistery how my body absorbed so much iron. High hepcidin is linked to inflamation which could be a link to Histamine, DAO insufficiency and mast cells disease. Once I solve the histamine issue I will have to circle back and see if my iron levels go down.
Dr. Marshall was saying in a presentation that inactive vitamin D actually blocks VDR while active vitamin D activates it. As I have very low inactive and upper-normal active form of vit.D the VDR is mostly activated and my immune system goes into overdrive. Now active form should be tightly regulated, that is if it's actually produced by the kidneys, but, as LINE pointed out, some cells of the immune system can do the conversion in an unregulated way. For example in the case of granulomas in the lungs, ingested vitamin D would be converted into possibly too much active form(as it's unregulated). As a coincidence I have spots on my lungs and doctors are always wondering what it is when they take an X-Ray: I'm not a smoker, nor do I have cancer. This is just a wild theory of mine, hope I can confirm or disprove it. Actually, if I think about it, I could just buy the active form of vitamin D(there would be no cofactors needed to activate it) and see what that does, but I'm little scared of a severe activation of the immune system(I have had situations in the past where it was somewhat difficult to breath). Will let you know if I go through with it.
I realize my reaction is the complete opposite: 4000 UI made my body react very bad. Dr. Marshall was saying that VDR can be infected by some pathogens, maybe that's my case. I use to take Desloratadine(anti-histamine) to keep allergies under control, but unfortunately recently it does not work so well and seems to cause some stomach upset.
The only thing that works at the moment is Quercetin but the effect doesn't last very long, I have to take multiple doses. Coincidentally Quercetin is said to activate VDR(might be similar to Olmesartan in that sense) and also stabilise mast cells.
Might be a good idea to do a full DNA sequencing, there's lots of clues there, but it still requires reading. For example I found out about the DAO deficiency while reading medical studies as it was not included in any report. It's great to be able to check stuff when new studies come out.
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My suspicion is liver congestion - there are a number of different things that can be done. You could look into taurine or methionine or possibly NAC but considering that NAC is a precursor to glutathione maybe that could be a problem in your situation.
Methionine is very involved in immunity and the liver pathways. There is a connection between MCAS and low methionine levels. Personally, I would start with 500mg to test for compatibility.
Taurine and liver pathways are closely tied.
Some Vitamin B6 or B2 may be helpful. Choline is something to look at as well since it is involved in liver (methylation) and is a precursor to neurotransmitters. All B vitamins are associated with methylation but it can be a hit or miss approach meaning that there may be a more pronounced need for specific ones. This becomes a trial and error method.
Methionine is very involved in immunity and the liver pathways. There is a connection between MCAS and low methionine levels. Personally, I would start with 500mg to test for compatibility.
Taurine and liver pathways are closely tied.
Some Vitamin B6 or B2 may be helpful. Choline is something to look at as well since it is involved in liver (methylation) and is a precursor to neurotransmitters. All B vitamins are associated with methylation but it can be a hit or miss approach meaning that there may be a more pronounced need for specific ones. This becomes a trial and error method.
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linusbert
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thats not quiet correct. for healthy people that is. but those conversations of vitamins in the body are highly complex and require that ALL cofactors are present. if one is missing that conversation will not work and beta carotene in that case might be just useless.
this is for amino acids the same. there are a lot of things like taurine which are not considered mandatory because the body can theoretically make it, but in sick, vegan and deficient people those pathways might not work, in that case supplementing those things like taurine, carnitine etc. might do nice things.
i would suspect you are actually low on sodium. try combining the potassium with sodium.
potassium is for getting rid of water so its a natural diurethic and sodium is the opposite, its for rention of water. the body needs a delicate balance of both.
actually if you take a spoon of sodium with a glas of water that might leed to not having night urination or less.
so if frequent urination is a problem, taking sodium might be worth a try.
i also pee more when taking my 300mg potassium. but thats what it does.
lactoferrin might be worth a try, actually its to fix iron deficiency, but its a transporter. might work both ways getting it in and out. NOT SURE about this. needs to be read again.
https://www.turtletree.com/how-lact...-the-body-and-keeps-you-performing-your-best/
damn actually i have it here, should try it for my copper deficiency.
sarcoidosis?
vitamin D is controversial here. i cannot give any recommendations.
often sarcoidosis resolves automatically at some point in time.
but its more complicated, you could have missing cofactors all the way somewhere around the pathways. its not just activating one thing, its also regulating , and turning off. i dont know the D pathways and how they being influenced, but the body is one big chemical machine where one thing influences a lot of others. hard to tell.
that was back then. now its not working anymore like this for me.
i heard that too, i think coimbra is having that theory. they use megadosis to push through the blockade and use parathormon as indication when its enough.
i did WGS. nothing so far explaining it for me.
My experience is not nearly as bad, but I do feel that may hay fever (birch, pine and rye pollen mainly) are getting worse when I am sunbathing. Haven't tried if it also happens with Vit. D supplements.
I've seen some information today about Aspergillus fumigatus getting into lungs and causing problems which got me thinking and next time I will do blood tests I will also test for this. There are several reasons I found this interesting:
- there is a mutation in Aspergillus fumigatus because of using azoles pesticides on tulips; my grandmother, (where I spent some time as a kid) had lots of tulips in the backyard
- I've had difficulty breathing as a kid and also the aforementioned shadows/spots on my lung X-Rays, this is the place of infection for this microbe
- Aspergillus fumigatus needs a lot of iron, I do have a lot of iron in my blood which would allow it to grow
- this microbe can lead to high Histamine release when in contact with the spores, it potentially complicates any histamine problem like MCAS
- there is some information that A. fumigatus swollen conidia (SC) induces the expression of 1α-hydroxylase, the enzyme catalyzing the synthesis of active vitamin D, and vitamin D receptor (VDR) in 16HBE cells and leads to increased local generation of active vitamin D; this could explain my vitamin D problems
I've tested stuff that had far less coincidences with my condition and even if I don't have the full spectrum of chronic infection symptoms, for me, it makes sense to test this.
For some time now I've noticed that my allergies get worse even if I don't sunbathe: just by opening the windows in my room, this could mean I am also allergic to something in the air. I've found a test called ALEX2 which analyzes responses to 295 allergens(some of which are molds). I will simply have to take this test to see what I find.
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linusbert
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could it be due to increased exposure by beeing outside?
thats interesting , how to treat it?
i am not sure but to some flowers i react very harshly allergically. could be tulips.
That's a great point, but I don't think so because I am getting my sunlight exposure in 30 minutes around noon on the balcony. On other days, I am outdoors for longer without exposure of the skin (so not much Vit D produced) and don't have the same flare up.
That's why I suspect it's the Vit D. Of course, it could also be another effect of the sunlight, e.g., on the immune system. But I strongly suspect it's Vit. D. I should some day check this by taking a high-dose supplement and see if there is the same effect.
linusbert
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best would be to try behind a UV blocking window.
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I would like to know what you found out about your SNPs because my husband has been getting flares of severe respiratory issues from taking vit D (even penumonia) along the past 8 years (I must add he does have liver issues from both specific SNPs and previous infections). He is +/- for 3 vit A SNPs:
BCMO1 rs4889294 CT +/- risk allele C
BCMO1 R267S rs12934922 AT +/- risk allele T
BCMO1 A379V rs7501331 CT risk allele T
linusbert
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those SNPs are reduced conversion rate from beta carotene to retinol, so what i could imagine is that he is imbalanced by the D as A is the counter part to it. also might be low or deficient in A/retinol. oral D can even cause depletion of A in the liver.
increased respiratory issues can be a sign of A deficiency. so taking D can aggravate that. does he have any other symptoms of A deficiency, like eye problems , night vision problems?
did you try some retinol , best in form of liver? might need retinol and balance.
vitamin A / D and zink and selen and C work in concert.
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My thoughts exactly.
Not really.
He can't eat liver due to iron overload.
Sounds like a good combo, I am just not sure about C due to the iron issue... I think ALA is a must to chelate iron and improve insulin sensitivity. Supplements are actually quite hard for us, there is always an undesired effect around the corner... Mostly headaches.
Thanks for chiming in!
linusbert
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for the iron you might check lactoferrin. its transport for iron, usually to treat deficiency. but its overall transporter so it could be beneficial even on overload.
its hinting at that here https://drlauryn.com/wellness-knowledge/iron-overload-101-all-you-need-to-know/
and i think i read that sometime ago that it could work both ways. but i would do some research on that.
its hinting at that here https://drlauryn.com/wellness-knowledge/iron-overload-101-all-you-need-to-know/
and i think i read that sometime ago that it could work both ways. but i would do some research on that.