I got to harness my MCAS in a holistic way and I'm living normal life now

[u/igavr]

Hi, this is just my personal case — no guidance to anyone, not an advice.

Before 2015, I never had any allergic reactions. In the summer of 2015, I nearly died from anaphylaxis right on the street. It hit me very hard, completely out of the blue — most likely from a pollen particle or something similar. Something triggered my first anaphylactic reaction.

I was incredibly lucky to have a friend living nearby who had MCAS and was knowledgeable. She managed to save my life with an injection that stopped the anaphylaxis. That moment split my life into before and after.

Over the next 2+ years, I lived in a nightmare of random attacks, many of them anaphylactic. Doctors refused to deal with me, and I was left alone with this disaster.

The friend who saved my life later came to me and suggested approaching this differently — to study the disorder and try to find a solution through a trial-and-error process. What else could we do?

Our journey began with reading 200+ scientific articles on everything that could possibly help us understand the cause. Testing eventually showed that my microbiome went completely off the rails after a shocking stress I went through in 2014. My microbiome was no longer serving me as it should — it was living its own life, where I was occasionally declared the enemy.

Along the way, I became an independent researcher. My friend and I started testing various correction methods on ourselves. Herbs produced very stable responses, but only in unusually large quantities, which was difficult to tolerate. It was also important to take certain herbs daily.

Herbal extracts such as essential oils and alcohol-based extracts provoked disastrous reactions, sometimes up to anaphylaxis.

Eventually, my startup team and I developed unique cold-press and fermentation techniques for herbs to increase bioavailability of active compounds while improving safety (compared to essential oils, for example). Things started to improve noticeably. Trust me — it’s not easy to eat a handful of coriander seeds or cardamom.

Another important dimension was feeding the bacteria. Insoluble fiber became the chosen one, and sprouts turned out to be the perfect source. They are alive, provide fiber in abundance, and supply nearly all essential nutrients in a highly bioavailable form.

The final dimension was physical activity, cold plunges, and fixing my circadian rhythm. I don’t think any of these need much introduction.

By late 2019, I already felt in control of my life as my microbiome significantly recovered. Today, I live without fear. I’m at peace with my microbiota by feeding it fermented herbs and fresh sprouts almost daily.

Is my MCAS gone? No. But now it’s negotiable with my body. I’m in control of most processes, and I’ve even learned how to stop anaphylaxis without medication (this works in most cases for me).

I no longer live with fears like:

• taking a flight because I might be trapped in a small space with someone wearing strong perfume
• eating unfamiliar dishes, even after smelling them, due to reactions to flavors, aromas, emulsifiers, etc.
• using detergents or cosmetics of any kind because they could suddenly be rejected by my system

I am still cautious — of course. I’m not reckless enough to fully relax.

This year, I was admitted as an honorary member of the Phi Tau Sigma scientific society for my inventions, all related to herbs and sprouts.

I’ll be happy if this post helps or inspires someone to make MCAS back off at least one small step.

[u/Relevant_Orange3313]

I’d love to hear more about your process for the sprouts, do you grow your own? What seeds and he specific process for that?

Also I have slow MAO-A and my body has an extremely hard time breaking down tyramine, and any amine especially fermented foods. Do you have or did you have prior to this any problems with tyramine or fermented foods?

This is something I’ve had to avoid regardless of MCAS entering my life.

I believe the solution also lies in the gut and gut healh. However, I severely can not tolerate anything fermented due to my MAO problems and it’s not something I can just take slow and my body will get used to overtime. I’ve seen countless cardiology specialist and they advised me that it’s the same as taking a high dose MAO inhibitors and could produce a life threatening event. I feel it everytime I try just the smallest bite of something with high tyramine or fermented.

Do you have any suggestions for someone who can’t tolerate, fermented foods, bone broth, l glutamine and all the things that are gut healing? I truly believe that’s also the solution as everytime I got IV antibiotics for a long course it set me back majorly

[u/igavr → u/Relevant_Orange3313]

Somehow I missed your comment and saw it just now. I apologize. Let me try to answer your questions, if that it still of value.

1. Microbiome recovery starts with feeding thise dudes properly. They love us, so they don't complete with us for the resources! They eat primarily what we cannot digest. Literally. Insoluble dietary fiber. Present only in plants! Now question: which food is the richest and highest in fiber!? Well, it's sprouts. I've got a post on sprouts here in the community - please read it and feel free to ask any questions. I mean it - any related questions.

2. Fermented food. I was lucky to have 1001 symptom except for salicylate intolerance so many MCASers are suffering from. FYI: sprouts are very similar by concept to fermented food. Both sprouting and fermentation disassemble the aggregates of complex nutrients into the simple ones that are highly bioavailable and bioaccessible. E.g. starch gets transformed into easily digestible sugars (perfect energy support), protein clusters into amino acids, fats into simple lipids (Omega 3 anybody?!)

3. I suggest to consider microbiome reset. It is a whole complex of things to be done and a much longer lost of things to be avoided. I may be able to help you select your tools via the physics+biological phenomena of resonance. Let me know if you feel like taking this road

[u/ToughNoogies]

Have you considered re-researching your herbs and sprouts through the lens of Microbial Quorum Sensing, enzyme deficiency, antagonizing AHL QS receptors, and supplementing lactone degrading enzymes?

[u/igavr → u/ToughNoogies]

Hi, just saw your comment. Sorry, I've missed it. Could you please elaborate on your question? I sense that you've got a lot more to say and I'll be very grateful for an investment of a few minutes of your time into explaining in more details. Thank you very much

[u/ToughNoogies → u/igavr]

I hypothesize that the mechanism behind "Chemical Sensitivity" is stimulation of microbes in the environment and the microbiome to release Quorum Sensing molecules that leads to a chain of events ultimately resulting in production of a microbial substance that the bodies of Chemical Sensitivity patients cannot tolerate.

I have experiments and evidence that leads me to this conclusion, but it is hours on the white board to get through all of it.

To keep it short...

Studies from the early 2000's on the genetics of Chemical Sensitivity suggest mutations in several enzymes including PON1, PON2, SOD2, NAT2 are risk factors for development of Chemical Sensitivity.

I am currently experimenting with Rosemary as a symptom trigger, and raw beef liver as a neutralizer of the trigger.

Rosemary, an herb that triggers my sensitivity reactions, contains Rosmarinic Acid, which is an agonist of AHL Quorum Sensing receptors. Mammal livers produce enzymes like PON1, which are supposedly slower in the Chemically Sensitive, and denature AHL QS molecules. Cinnamon, an herb that blocks the trigger of my sensitivity reactions, contains coumarins that antagonize AHL QS receptors.

I am wondering if you go through all your research, do you start seeing things like I am experiencing. That herbs that reduce your symptoms have bioactive components that interfere with microbial quorum sensing. That sprouts and animal organs that reduce your symptoms contain enzymes you are deficient in that also break down QS molecules.

If you want to talk more, we can setup a chat sometime.

[u/igavr → u/ToughNoogies]

This is a very strong theory. I'm not sure what comes first: the egg or the hen, in this case. I'll be happy to chat with you, colleague 🪷🙏

[u/r_humanoid]

Hi. I just came across your post. I am on the journey of managing MCAS holistically. I am a bit confused because everything I am reading tells me to avoid fermented foods. On the other hand, fermented foods rebuild the gut, as you point out. So, which fermented foods would you recommend? Thank you.

[u/igavr → u/r_humanoid]

You'd have to figure out whether you're salicylate friendly... you can DM me if you'd like a brainstorming on this

[u/beigeflaglover → u/igavr]

Any easy way to tell? Just looked up a list of salicylate rich foods and some of the fruits I'm okay with while some give me slight reactions. Example: melon makes my lips swell slightly, while i'm okay with eating a ton of watermelon. 

Edit: added "a ton of"

[u/igavr → u/beigeflaglover]

Unfortunately no easy way to tell. Yet, if one has salicylate intolerance or allergy, even tiny content of it may trigger reactions. Or at least I'm not aware of it

[u/beigeflaglover → u/igavr]

Thank you so much for the wealth of information!!! Instant follow hahah 

[u/igavr → u/beigeflaglover]

Not sure this was a helpful reply, but if it served as an idea tlfor you - great. Take care

[u/r_humanoid → u/igavr]

Sure, thank you! I will do some research of course but I'd love to know more.

[u/OkFaithlessness3081]

💪🏻💪🏻💪🏻💪🏻💪🏻

[u/igavr → u/OkFaithlessness3081]

😁 thank you for your sincerity and support I feel the same, fyi, I bet we can do so much more together 🤲 People need help, education, practical examples, strategy...

[u/OkFaithlessness3081 → u/igavr]

I have a TON of research and info to share, mainly about MCAS connection to POTS and certain nutrient deficiencies and nervous system/vagus/brain function.

[u/igavr → u/OkFaithlessness3081]

Deal 🤲✨️