r/MCASHolistic

What would you do differently in the beginning of your MCAS if you knew what you know today?

I often think about this. I cannot help that. I wish I knew these simple things back then and acted accordingly:

- eliminate all detergents and home care products with crazy aggressive chemicals from my place

- eliminate all cosmetics with a regular list of ingredients that provoke mast cells (most commercial brand are a disaster in this sense)

- don't touch packaged food as most of it contains preservatives, colorants, aromas, flavors, emulsifiers, flavor enhancers and all that crap that makes mast cells very vulnerable

- protect religiously my circadian rhythm (not only sleep time)

- eat as much dietary fiber as I can for feeding my gut microbiota - the good bugs

- put effort in eating living food instead of cooked as much as possible - I wish I started sprouting my food earlier!

- get medical checkups on a regular basis for discovering micronutrient deficiencies soo er than later

- reduce stress to minimum because it will drain the remaining resistance power

Share with those who need this 🙏 and please share your tips and "I wish I started this earlier" 🙃

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u/migraint — 4 days ago

MCAS Mystery of the Week

Medicine doesn't always have an answer - especially with complex conditions like MCAS.

Every week, we'll ask one question that might help uncover patterns the literature doen't fully explained.

Here's my bi-weekly question:

What's the strangest symptom you've experienced that no doctor could explain?

There's no requirement for scientific proof here, only your personal experiences. If you've had the same symptom as someone else, let them know. You might help each other feel a little less alone.

Why this exchange is useful? Because we can help each other by sharing and brainstorming together. Comments are not meant to be used as medical advices or instead of help by dedicated and knowledgeable doctors. This is meant to be a complementary and educative discussion.

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u/igavr — 7 days ago

MCAS Mystery of the Week

Medicine doesn't always have an answer - especially with complex conditions like MCAS.

Every week, we'll ask one question that might help uncover patterns the literature doen't fully explained.

Here's my bi-weekly question:

What's the strangest symptom you've experienced that no doctor could explain?

There's no requirement for scientific proof here, only your personal experiences. If you've had the same symptom as someone else, let them know. You might help each other feel a little less alone.

Why this exchange is useful? Because we can help each other by sharing and brainstorming together. Comments are not meant to be used as medical advices or instead of help by dedicated and knowledgeable doctors. This is meant to be a complementary and educative discussion.

reddit.com
u/igavr — 14 days ago

Kounis syndrome, honey, and the B12 histamine link, mechanism breakdown

Had my own Kounis type episode triggered by honey, so I went digging into the actual research to understand why, and found some real mechanistic threads connecting honey, histamine, mast cells, and B12 deficiency, some documented directly, some I'm connecting myself.

What Kounis syndrome is

Kounis syndrome is an acute coronary event triggered by an allergic or hypersensitivity reaction rather than typical plaque buildup, first described by Kounis and Zavras in 1991. The mechanism runs through mast cells, when they degranulate during an allergic reaction they release histamine, tryptase, chymase, and leukotrienes, and these mediators directly cause coronary artery vasospasm and can provoke plaque rupture. Mast cells are concentrated between myocardial fibers, around blood vessels, and in arterial walls, so this isn't a distant systemic effect, it's happening locally in the heart tissue. It shows up clinically as chest pain, ECG changes that can mimic a heart attack, and elevated cardiac enzymes.

Honey as a documented trigger

There's a specific documented case of mad honey, made from nectar containing grayanotoxin, causing Kounis syndrome through mast cell activated vasospasm, confirmed on angiography as a type 2 MI. That's the only honey specific case report in the Kounis literature.

Regular honey isn't in a Kounis case report, but the histamine mechanism is separately well documented. Honey itself is generally low histamine as a food, but it carries pollen, and pollen proteins are classic IgE mediated allergens that cross-link IgE on mast cells and trigger degranulation. Honey also contains biogenic amines like putrescine and cadaverine, which trigger histamine release from mast cells and add to total histamine load even though they aren't histamine themselves.

Where B12 fits in

This is where it gets interesting. B12 plays a direct role in histamine clearance through the HNMT pathway, one source lays out the mechanism specifically, reduced methyl B12 activity means insufficient SAM available for the HNMT enzyme to methylate and break down histamine, so histamine released from food ends up causing symptoms that mimic mast cell activation even when the mast cells themselves aren't the primary problem. Other sources describe the same link from the other direction, B12 deficiency impairing DAO activity and reducing methylation capacity broadly, both of which are needed to clear histamine effectively. MCAS is also specifically noted as often associated with functional B12 deficiency in the literature.

Putting it together, my own connection, not an established finding

None of these sources actually link B12 deficiency, honey, and Kounis syndrome together in one study, so this next part is me connecting three separate bodies of research based on my own case, not citing something already proven. My working theory is that in someone who is B12 deficient, histamine clearance through HNMT and DAO is already impaired, so the histamine and biogenic amine load from honey doesn't get cleared efficiently, mast cells release their full mediator cocktail, and in a heart that's already sensitive, that mediator surge is what triggers the coronary vasospasm underlying a Kounis event. Whether that connection has been studied directly, I don't know, I haven't found it in the literature yet, but the individual pieces (B12 deficiency impairing histamine clearance, honey triggering mast cell degranulation via pollen and biogenic amines, and mast cell mediators driving Kounis syndrome) are each independently documented, they just haven't been strung together as one pathway in a published case as far as I can find.

Kounis syndrome mechanism and mast cell pathway, PMC6614985, https://ncbi.nlm.nih.gov/pmc/articles/PMC6614985

Mad honey induced Kounis syndrome case report, International Journal of Cardiovascular Academy, https://ijcva.org

Kounis syndrome review, PMC12597132, https://pmc.ncbi.nlm.nih.gov/articles/PMC12597132

Honey histamine and pollen allergen content, Fact vs Fitness, https://factvsfitness.com/en-au/blogs/news/honey-high-histamine

Honey and histamine intolerance mechanism, Wyndly, https://wyndly.com/blogs/learn/honey-histamines

B12, SAM, and HNMT histamine methylation mechanism, https://b12oils.com/mcas.htm

B12 deficiency, DAO, and methylation in histamine intolerance, Dr Hagmeyer, https://drhagmeyer.com/vitamin-b12-and-histamine-intolerance-everthing-you-want-to-know

Another post about kounis Syndrome https://www.reddit.com/u/Brad_Borrelli/s/8qJGdK3Uqj

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u/Brad_Borrelli — 12 days ago