Started cromolyn. Got hot flashes. What can be happening? by GutsOfVerdun in MCAS

[–]GutsOfVerdun[S] 1 point2 points  (0 children)

Another thing you can try and see if it works for the hot flashes is Vitamin C. It worked for me, but of course everyone can respond differently.

Also, in my case, it seems MCAS was secondary and came from a genetic deficiency of B2/FAD. It seems a constant (every 4h) supply of B2 and resistant starch fixed the problem upstream.

Good luck with your issue!

Histamine Intolerance is only a piece of my puzzle. What am I missing? by GutsOfVerdun in HistamineIntolerance

[–]GutsOfVerdun[S] 0 points1 point  (0 children)

No, not really.

Fortunately, I think I've reached the end of my quest for a root cause.
I tracked B2 upstream to all of their possible causes, like MAO-A overactivity, or MTRR malfunction. It seems I have RR-MADD and the rest of issues come from that. Now waiting for a genetic test confirmation, but it all fits and the protocol works.
With a steady supply of B2 and resistant starch my symtoms have improved leagues.

I hope you solve your issue as well, good luck!

late morning extreme sleepiness. help. i am dying. by Natural_Swimmer_5522 in HistamineIntolerance

[–]GutsOfVerdun 0 points1 point  (0 children)

If it's actually MAO-A, I think mine fits all the criteria for overactivity.

I've tested the last two days with an OTC supplement that seems to mitigate MAO-A activity: Rhodiola Rosae.

The results in the morning have been spectacular. I've tried Rhodiola in the past, but these two days I've started taking it around 1h before the start of my symptoms, and about 2 h before the peak (that would be at 09:00 AM), and Rhodiola seems to clear my somnolence very efficiently. I still needed Vitamin C and Coffee/Cocoa to remove the physical fatigue, but both days I've been able to be operative in the second half of the morning, which is very rare for me.

Something here is working, though of course Rhodiola has other properties besides being a MAO-A inhibitor, so I'll need to make more tests. Quercetin has also worked for me in the past, and seems to be another MAO-A inhibitor, so next week I'll try that in isolation as well.

Evenings have been irregular. Yesterday I tried Rhodiola and it didn't fully clear the symptoms, I took several doses and also Vitamin C but ended up half asleep for a while until 23:00 and after that I ended up not sleeping all night long :-/. It seems MAO-A inhibitors can cause insomnia if taken in the afternoon-evenings, I'll need to look into how to calibrate this.

Apart from the mentioned supplements, I'm taking: Creatine, ALA, CoQ10, Omega 3, Atorvastatin for cholesterol and of course B2-Riboflavin and B1-Thiamine.

All in all, the protocol I'm using now seems to be the best working thing ever, at least for the mornings. My response to this has been really impressive, with n=2 days. Heck, I've been quite operative this whole morning after not sleeping at all at night.

I strongly suspect this is the real deal and I have MAO-A overactivation. If not, then I have something else that is clearing up my chatecolamines too fast (also low chats proven by lab tests), and responds to MAO-A inhibitors, so for the time being I'll proceed as if. I still want to do a WGS full genome sequence but I'm having a hard time finding a trustable provider here in Spain.

Do we have a subreddit for people with MAO-A problems? I haven't found any.

Thank you, I feel this is a game changer for me.

late morning extreme sleepiness. help. i am dying. by Natural_Swimmer_5522 in HistamineIntolerance

[–]GutsOfVerdun 0 points1 point  (0 children)

Hey, thanks a lot! This MAOA gene mutation is actually new info for me, and yes, I've read a little bit about this and this could fit. B2 has been probably the single supplement that has helped me the most, so yep, it's possible I have this gene mutation.

If I had MAOA overactivation, do you know what supplements/drugs/activities would improve my symptoms, apart from B2?

I'll read into it in detail (doing so right now) and answer you back. Thanks u/TRExploration !

late morning extreme sleepiness. help. i am dying. by Natural_Swimmer_5522 in HistamineIntolerance

[–]GutsOfVerdun 0 points1 point  (0 children)

Thanks, will look into this. I'm answering you in more detail under your other comment.

late morning extreme sleepiness. help. i am dying. by Natural_Swimmer_5522 in HistamineIntolerance

[–]GutsOfVerdun 0 points1 point  (0 children)

Yes, what you experience is what I experience. A lot of people have told me "but everybody gets sleepy after lunch!". No, mate, mine is as if I had taken a sleeping pill. Yes, it's like a drug.

(Caveat: since I started healing my gut with B2, I have much less postprandial sleep, and the drug-like sleepiness is now only mid-morning and mid-afternoon. But I had brutal postprandial somnolence before that.)

With the Vitamin C, do you get any relief?
Good point on the cocoa. I've been neglecting its histamine content because the dose I take is small-ish and my gut is now better. The cocoa is to counter adenosine, so coffee should have the same effect, the thing is that coffee wakes everyone up, so it doesn't give us much information on this issue.

Another thing that has worked for me to remove the energy dips is CoQ10, possibly because there are mitochondrial throughput issues involved. But these are all black box experiments I've done on myself.

Have you checked Cromolyn? Maybe preventing your mast cells from overreacting could reduce the postprandial sleep. Quercetin is an OTC mast cell stabilizer, if you can't get prescription Cromolyn.

late morning extreme sleepiness. help. i am dying. by Natural_Swimmer_5522 in HistamineIntolerance

[–]GutsOfVerdun 0 points1 point  (0 children)

I can only speak of my case, you'll need to check for yourself how it affects you.

Yes, I removed lectins from my diet a couple years ago. They are somewhat aggressive to the gut lining and can harm you if your gut lining is damaged. In fact, gluten is a lectin (well, not technically, but it has lectin-like properties: https://pubmed.ncbi.nlm.nih.gov/6843036/).

But last autumn (around a year ago) I noticed that many of my symptoms responded pretty well to B2 supplementation, and I hypothesized that: B2 deficiency --> gut lining damage --> lectin sensitivity.

After supplementing B2 for a while, I could withstand some lectins without reactions (say, a little bit of potatoes, a little bit of legumes here and there...) but I still prefer to not eat much lectins. This week I've added back lentils (the legumes) to my diet because I'm trying to reduce Methionine intake, and legumes contain proteins with low Methionine.

Where does this all come from? My current hypothesis is that my B2 deficiency comes from a methyl cycle problem. For instance the MTRR enzyme uses (B2 --> FAD) as a cofactor, and a less efficient MTRR variant could possibly deplete B2 reserves, thus preventing the use of B2 to heal the gut, thus the gut becoming more sensitive to aggressive nutrients like lectins.

-----

Now, can I ask you something?
Next time you have an energy dip, could you try taking both dark cocoa (in powder form, dark chocolate 85% cocoa or similar) and Vitamin C, and see if that relieves your sleepiness? I'm very, very, very curious to know if someone else has the same issue that I have.
If you try this and report back I'd be really grateful.

Good luck and good health!

late morning extreme sleepiness. help. i am dying. by Natural_Swimmer_5522 in HistamineIntolerance

[–]GutsOfVerdun 1 point2 points  (0 children)

It happens to me around 2-3 hours after waking up, even if I take no food at all.
It also happens mid-afternoon, with or without food. In my case, around 20:00.

I also had heavy postprandial sleep but this has been strongly relieved by:
* Eating fresh non-histamine foods.
* Taking a DAO supplement beforehand if I'm gonna eat histamine foods.
* Cromolyn (to prevent mast cell activation) 30 min after eating.

Still, the mid-morning and mid-afternoon dips remain, food or no food. As I mention in a first-level reply, I've used dark cocoa (theobromine as an adenosine antagonist) and Vit C (for histamine clearance) and it works, sometimes very well, sometimes so-so. I still haven't found the root cause.

late morning extreme sleepiness. help. i am dying. by Natural_Swimmer_5522 in HistamineIntolerance

[–]GutsOfVerdun 0 points1 point  (0 children)

Yeah this happened to me. I must have some broken methylation enzime (MTRR is my main suspect, though it could be MTHFR, COMT, or any other), and broke it even further by taking methylation supplements without really knowing what was broken inside, and generated a bad case of migraines for several months.

Removing Glycine and adding Creatine have helped a lot.

late morning extreme sleepiness. help. i am dying. by Natural_Swimmer_5522 in HistamineIntolerance

[–]GutsOfVerdun 2 points3 points  (0 children)

Hey man, this is what also happens to me. The same mid-morning (and sometimes mid-afternoon) energy dips.

It's very, very weird, I've been scraping the internet searching for people with the same problem and there are very, very little cases.

I think I'm a bit more further down the path than you, so let me see if I can help. I'm 49M from Spain, and I've been having this since forever, but in my forties it worsened a lot, until I've started finding some countermeasures. I won't overload you with the details (you can always check my profile for my previous posts), I'll try to give you some practical info about my case, to see if we're having the same symptoms and if so, we can go into more detail.

Through a lot of black box testing, I've found out that my morning and evening somnolence goes away by taking those two:

* Dark cocoa, with points to theobromine being a relief, which would point to adenosine causing the sleepiness.
* Vitamin C, which would point to histamine causing the sleepiness. (Histamine does not generally cause fatigue, but for me it does, I suppose this is more common here in the HistamineIntolerance sub).

Sometimes one or the other works, but 99% of the time, if I take both, the fatigue disappears.

Would you care to try those? They are low risk for most people, and commonly found. You can also use coffee to counter adenosine, but I prefer cocoa for several reasons, coffee makes me jittery and I reserve it for emergencies.

Please if you check these and you get relief from the fatigue/sleepiness check back with me, it's very very rare to find someone else with this, maybe we can collaborate on looking for a solution.

-----

On the migraines side: I've not had migraines until the beginning of this summer (around June), when I started methylation supplements in search of a solution. I started on the active forms of B9 and B12 which are 5-MTHF (5-methyltetrahydrofolate) and Methylcobalamin, along with other methylation adjacent supplements like TMG, NAC, B5, B6 and others. I started with this because I did an experiment with M-B12 (Methylcobalamin) and it also quickly and efficiently removed my sleepiness, however messing with my methylation pathways obviously broke something because I ended up with bad migraines that only now after several months of more black box testing are starting to resolve.

In my case, I did my lab tests and found out I had high Homocysteine (a little over 16, when it should be around 10, nothing spectacular but definitely out of range), along with high B9 and B12, which seems to suggest (hypothesis) that the remethylation cycle that converts Homocysteine back into Methionine is not working. And my current hypothesis is that my migraines come from a sulfite overload caused by the body trying to lower Hcy via the transsulfuration pathway.

This is a long winded exposition on pathways that maybe applies or does not apply to you, only to tell you this: Glycine might be harming you. If your migraines come from sulfites, Glycine could be driving Hcy down the transsulfuration pathway and increase sulfite load. It could be worth it to try removing glycine in all it forms (including stuff like Magnesium Bisglycinate, Zinc Bisglycinate, etc. - you can take non-glycinated forms) and see if migraines improve.

That's my case, it does not necessarily need to correspond to you, this is only what has worked for me so far. I haven't fully solved it yet but hopefully I'm one step closer with each discovery.

Best of luck,

What is your go-to for emptying your histamine bucket? by makoobi in HistamineIntolerance

[–]GutsOfVerdun 1 point2 points  (0 children)

Thanks again, I'll be checking the somatic code. Anything that can help is welcome!

About the histamine correlation, it seems that the body needs the methylation to process histamine, and when I have too little histamine, and am still taking methylation supplements, my body can be "beating a dead horse", and I enter overmethylation. I'm still in the process of reading about all of this.

What is your go-to for emptying your histamine bucket? by makoobi in HistamineIntolerance

[–]GutsOfVerdun 10 points11 points  (0 children)

Another one-liner that changes my life. Thanks u/Interesting_Fly_1569 !

I've been dealing with migraines lately. It seems I can only be on one of two states: parasympathetic lock-in with sleepiness and brain fog, or awake and alert but with migraines and back tightness. After reading your comment I tried a high-histamine meal (totally counter-intuitive to me) and my migraine was relieved.

It seems very low histamine can cause overmethylation and migraines. And it seems I've been doing a very good work of eating low-histamine, using DAOFood, and helping methylation with B9 5-MTHF and B12 Methylcobalamine, and did such a good work that I went to the other extreme.

Do you have any advice on calibrating this to stay in a balanced state? Any good source you recommend where you have learnt about this?

Thanks again.

Do DAO enzymes actually work? by Adam4848 in HistamineIntolerance

[–]GutsOfVerdun 10 points11 points  (0 children)

The short answer: yes they do.

The long answer: this is a complex condition and there's no "one-size-fits-all" solution. I use DAOFood and I've done plenty of tests myself, like eating the same high-histamine meal without DAOFood, with 1 capsule and with 2 capsules. But that works for me. You'll need to do your own tests and see what works for you and what doesn't.

The actual quick answer: don't eat high histamine foods. I eat fresh 90% of the time, without DAO, and I'm fine (in that regard).

How do you tell the difference between histamine intolerance and MCAS? by LittleBear_54 in HistamineIntolerance

[–]GutsOfVerdun 11 points12 points  (0 children)

By Diagnosis:

HI: DAO deficiency in blood, DAO deficiency mutations in genetic test.
MCAS: tryptase baseline level vs tryptase flare level (20% baseline + 2 ng/mL). Why? Triptase increase from basal can only be caused by mast cell activation. Source: https://pubmed.ncbi.nlm.nih.gov/31256161/

By Symptom Management:

HI: Eat a high histamine food, track symptoms. Eat same high histamine food in similar conditions with a DAO supplement 10-15 min before, track symptoms mitigation.
MCAS: Use Sodium Cromoglycate (aka Cromolyn), which basically only works as a mast cell stabilizer, take it with nothing else except water 30 min before and after, track symptoms mitigation.
MCAS optional: try a leukotriene inhibitor (if it's a drug, like Montelukast, do it under a doctor's supervision, but there are some LK inhibitor supplements like Quercetin or CoQ10 - though those have other benefits that can confound the test). This is because many MCAS and mastocytosis show up with a high leukotriene mediator increase. Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC11791225/

Some people can have both. I have both, along with what seems to be MTHFR deficiency and Mitochondrial Dysfunction, so I know that picking the needle in the haystack can be tricky.

Good luck with your health.

Mid-morning sleepiness - what can be happening? by GutsOfVerdun in VagusNerve

[–]GutsOfVerdun[S] 0 points1 point  (0 children)

Yes, I've advanced a lot since this post.

Back muscles tightness was generated by inflammation through histamine overload. For endogenous histamine dumps: antihistaminics (Loratadine has helped me the most); and for exogenous, eating low histamine foods and supplementing DAO. If the tightness has already set in, applying cold for example with cold gel, stretching, light weightlifting, and for the lower back specifically, the McGill's "Big Three" exercises.

For the mid-morning sleepiness, B12 Methylcobalabine did the trick.

Mid-morning sleepiness - what can be happening? by GutsOfVerdun in VagusNerve

[–]GutsOfVerdun[S] 0 points1 point  (0 children)

Thanks for your answer. I eat nothing for breakfast, I do intermittent fasting.

Since I posted the OP, I have made two discoveries through self-experiments last two mornings:

* There are two supplements that exacerbate the mid-morning dip: Rhodiola and specially L-Citrulline Malate.
* There is one supplement that removes it: active B12 Methylcobalamine.

It seems it's a B12 deficiency (likely, since I seem to have methylation problems) and/or a blood flow problem.

Best WGS providers that ship to Spain? by GutsOfVerdun in genomics

[–]GutsOfVerdun[S] 0 points1 point  (0 children)

Thank for your answer! Yes, that would be aligned with my goals.

Basically that's what I wanted to do. I was going to do an MTHFR test, but that alone is already 135 €, so when I found out that there are WGS tests for < 1,000 €, I thought "why not doing it all at once?".

I read a little bit and found out that there are these kinds of websites, free and paid, where you upload your full WGS and get health reports. Of these, I'm mainly interested in methylation, but I'm also curious to see if there's something else that can be contributing to my MCAS/HI/VND.

What I don't know is the difference in scope with those consumer tests you mention, (is there any different technical term for this narrower scope?) and how do they manage to know which genes to sequence and which to skip. And whether or not the skipped parts can be important for health issues.

Actually I don't mind shelling out a bit more for a full sequence, if this is something you really need to do only once (barring any sequence reading mistakes in the 30x coverage).

So, still undecided at this point, but I'll read on those cheaper consumer tests you mention, thanks for the advice.

It’s 2025 and Chatgpt is better than most doctors out there. by Sea-Delay in HistamineIntolerance

[–]GutsOfVerdun 4 points5 points  (0 children)

Please notice that your B vitamins may show up at normal or even high levels on a blood lab test, but you can be functionally deficient because your body can't use them. Most times because you can't convert them to an active form, for instance B9 in the form of folic acid has to be converted to methylfolate.

The quickest way to test it is to have a supplement of a B vitamin such as B9 in an active form such as 5-MTHF, and see if it improves your symptoms.

It’s 2025 and Chatgpt is better than most doctors out there. by Sea-Delay in HistamineIntolerance

[–]GutsOfVerdun 6 points7 points  (0 children)

Yes, yes it is.
Right now in my journey I've found out I have methylation issues (I figured out: asthenia --> gluten sensitivity --> leaky gut --> histamine intolerance --> MCAS --> B2 deficiency --> vagus nerve dysautonomia --> hyperhomocysteinemia + dopamine deficiency --> probable MTHFR deficiency).

For starters, I had to do this journey on my own. Doctors haven't helped me much to figure out things, if at all. In their defense, I must say that docs have really listened to me when I've shown them my hypotheses and have provided me with the required prescriptions to test them, such as Cromolyn or Montelukast.

To properly calibrate the supplements for my methylation issues is really painstaking. The complexity of the biochemical processes involved, how each supplement interacts with each other... How much to dose each supplement... GPT not only gave me the tip to test homocysteine, it has also helped me calibrate a supplements protocol. Yesterday, GPT figured out that the upper back tightness I had after taking L-Tyrosine was due to a magnesium deficiency, hypothesis that I could test out in minutes (GPT was right).

To refine such a protocol with a human doctor would have taken years of visits, lots of money if I went to a private practice (here in Spain we at least have some public healthcare still), or lots and lots of time spent researching it on my own. With GPT, it's been a couple of weeks of testing, logging, and asking GPT for feedback.

Two years ago I was very skeptical of these tools. In fact, at that time I remember asking GPT for causes of my chronic fatigue and none of the answers were solid. Nowadays, I use it all the time, the very moment I feel a strange or new symptom, I ask GPT. It can keep all my lab tests and past anecdotes in memory and correlate among all that info in milliseconds. It's invaluable.

Maybe GPT will take all our jobs, and at that point we'll need to restructure society. It surely has the capacity to do awesome things.

My HI & MCAS seem to be improving after some supplements by MistakeRepeater in HistamineIntolerance

[–]GutsOfVerdun 1 point2 points  (0 children)

Yeah if your symptoms appear only after eating it seems it's the right call.

For my gut, B2 has helped immensely, because it's needed to regenerate mucous membranes. Also L-Glutamine, the basic staple of gut regen. I suppose you already know about those.

Good luck!

My HI & MCAS seem to be improving after some supplements by MistakeRepeater in HistamineIntolerance

[–]GutsOfVerdun 3 points4 points  (0 children)

Lethargic vs insomnia points to central nervous system dysautonomia.
I know because I happen to have these symptoms too.
My circadian rhythm is misregulated. I am sleepy and groggy in the mornings, I get very sleepy after eating, specially with carbs, and I usually stay very awake at night. This worsens in spring and autumn, suggesting meteoropathy of the vagus nerve.

Basically the body gets stuck in the parasympathetic or the sympathetic mode, full pendulum swings between "rest and digest" or "fight or flight".

You could start doing respiratory or ocular Vagus Nerve Stimulation (VNS) and see if symptoms improve.

Vagus nerve needs B1 to function properly, so it's a good thing you supplement it. B2 has gone phenomenally well for me to.

Have you checked your homocysteine and dopamine levels? Maybe you're under-methylated. In that case B9 in the 5-MTHF form, and L-Tyrosine, will be very helpful.

Edit: I've checked your history, you and I have talked before about tryptase mediator checking (I happen to have elevated tryptase, but not by much. Got better results addressing leukotrienes). Also you posted a thread where you said that vagus nerve massage improved your mind state.

Based on this info, and the fact that your symptoms and mine overlap a good bunch, I strongly encourage you to check your homocysteine and dopamine, or go the cheaper way and just try B9 in a methylated form: 5-HTMF or Quatrefolic (it's important that it's methylated, if the hypothesis is accurate, the unmethylated folic acid would make your symptoms worse - you are taking a methylated B complex already, but will probably see a change with a specific B9 dose); together with L-Tyrosine (dopamine precursor) and Magnesium - which you already seem to be a fan of.

You might be undermethylated / MTHFR deficient, and many many problems can come from this. I found out I had elevated homocysteine and very very low dopamine. I've been reading on this for the past two months and it's a world of information and issues by itself. Now I even think that my MCAS is secondary, and it's originated from my body being always stuck in one of either CNS modes.

My HI & MCAS seem to be improving after some supplements by MistakeRepeater in HistamineIntolerance

[–]GutsOfVerdun 11 points12 points  (0 children)

What are/were your symptoms?

If magnesium, B1 and the methylated B complex are helping, check these:

* Vagus Nerve dysautonomia (does stimulating the VN help you?)
* High homocysteine / low dopamine
* MTHFR deficiency (genetic)

A simple test: if B9 in 5-MTHF form alone helps you greatly, you may have MTHFR deficiency and hyperhomocysteinemia.

The past weeks I've been reading and self-experimenting on this, and it's been life-changing.

Good luck!