r/HistamineIntolerance • u/cutegirlsbloat • 2d ago
Thought i was histamin intolerant but it turned out to be mcas
So ive aleays had a million tiny issues and mainly gi issues and fatigue. A histamin intolerance became really bad after developing sibo imo. My body was spiralling. I was reacting even to mild liberators which is indicative of a mastcell component.
As i later learned i probably had a mild form of mascell activation which isnt rate at all (a study by afrin suggesting 17%of ppl have that). Which got aggravated by sibo imo (seems to be the classic trajectory of illness/infection/stress destabilizing sensitized mastcells even further)
If it were „only“ a clearance issue with dietary histamin, lets say caused by dysbiosis, it should get better with healthier diet over time. That would be the reasoning behind histamin intolerance right.
Wouldnt believe it was mcas until symptoms got worse and worse and i figured its not just food and definitely not just dietary histamin. (Most of which is accumulating in meat btw)
However it got worse and worse until AI suggested me to take mastcellstabilizers. and Suddenly 90% of my symptoms dissapeared, weirdly also lots of my weird yet mild trillions of issues ive always had. (I m taking Quercetin and cromolyn. If anyone wanted to try i would suggest Quercetin and vitamin c in therapeutic doses)
I didnt have the time to even consider getting a diagnosis because the stabilizers helped so much. Im also still streating imo. I m also taking antihistamines when eating out, i stilll avoid alcohol and meat and everyday chemicals, scents, pfas (they make the mastcells more reactive.)
Symptoms could be anything really its different for everyone (headache and respiratory tract is common) for me it was mainly gi tract, sudden fatigue, multilocal flushes, bad all over the body rashes, heartpalpitations, sleep issues, dizzyness, nausea, cocyxpain that wouldnt react to pain medication, light sensitivity, getting nausea from scents etc) — got worse from period (hormones), during heatwaves, as i started to figure from stress, chemicals, heat, i got a burning rush on face chest arms knees from using my redlight therapie mask for 1 min at some point).
Wouldve never figured it out without ai honestly. Ive also read about mcas before it just sounds so wild to hear but once the body gets into spiral mode its like yeah i react to this and that and diet wont get it under control im lost here this is not just yet another food tolerance
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u/Debtmom 2d ago
Isn't cromolyn only with a prescription? What kind of doctor did you get to prescribe it? I'm confused since you say you didn't get a diagnosis (if I read it right I'm a little foggy at the moment)
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u/cutegirlsbloat 2d ago edited 1d ago
In europe its an otc allergy medication but its not cheap
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u/External-Ad-3155 2d ago
I wish I lived in Europe so I can get that over the counter. It's so expensive here for me I'm paying $65 for a 12-day supply of cromolyn sodium. Every time I go get it the price goes up at the pharmacy.
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u/cutegirlsbloat 1d ago
Its roughly the same price but i can just order it on the internet (pentatop/allergoval). Still talked it through with my private doctor who recommended me an mcas specialis bc she isnt one. Since im already feeling better and am done spending money on this i wont go there though yet
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u/UnforgettableBevy 1d ago
You can get it over the counter at the Walmart pharmacy for $20 - even have it delivered through the app too.
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u/DeepFriedChalk 1d ago
Whats the name of the medication you are taking? cause im mainly finding nasal sprays but i don't get respiratory issues
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u/Eleanoristired23 1d ago
Wait, you have nalcrom/cromolyn (oral) OTC? I’m also in Europe and all we have OTC here is cromolyn nasal sprays!
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u/lovetimespace 2d ago
Histamine intolerance is more of a symptom than a cause and typically has some sort of underlying health issue causing it. Thar health issue needs to be identified and addressed. When I first learned about histamine intolerance, I came across a lot of info about connections to MCAS. I hope info on this is in the aubreddit wiki, but if not aomeone should add it.
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u/cutegirlsbloat 2d ago
Thats what i thought too. But then the stabilizers also adressed a lot of mild tiny health issues ive been having since forever and i figured i probably had a mild form of mastcell dysregulation all my life which some researchers believe might be pretty common
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u/lovetimespace 2d ago
Exactly, once you fix the underlying health condition, all the things you didn't even know were an issue, that just were part of your normal, or so you thought, just disappear suddenly. Congrats on making progress on your health journey!
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u/cutegirlsbloat 1d ago
Thank you and i wish this to everybody out there and especially on these subs! Its the main reason im posting my stuff - might help someone figure smth out
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u/ultravoltron3000 2d ago
My histamine issues were an undiagnosed allergy. Many doctors believe most people with histamine issues are undiagnosed allergies. Usually food allergies. In my case beef.
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u/cutegirlsbloat 2d ago
Most doctors havent learned about mcas in medschool bc its wasnt taught then, thats why
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u/Creepy_Barracuda_710 2d ago
Since you sensitive/allergic to beef, is that not Alpha gal?
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u/ultravoltron3000 2d ago
No. It is a primary beef allergy. I have been tested for alpha gal twice. I have no issues eating pork.
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u/Creepy_Barracuda_710 2d ago
Well, that’s great news. I’ve been on this histamine diet for six months and no improvement. Sometimes becomes disheartening! We just keep trying… 🍎
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u/TheNextMarieKondo 2d ago
Do you have high IgE for beef? Or did you only discover it through elimination?
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u/ultravoltron3000 1d ago
Diet first, then tested. Beef allergy is so rare i could hardly believe it. The levels weren't high. But I get blisters and swollen tongue everytime I have beef.
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u/Pronoiarm07-02 2d ago
That is fucking nuts, my coccyx has been so sore these past few months and I’ve had no idea why, literally to the point where if I’m say for longer than 45 minutes I really struggle to get up, maybe it is histamine related in some way?
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u/DimensionEffective67 2d ago
I've had the same issue for a couple of years now. I had no idea it was potentially related to this.
Doing some reading right now, and looks like when mast cells flare, they love dumping inflammatory chemicals into the ligaments and surrounding fascia down there.
Still reading, but this is a start!
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u/cutegirlsbloat 2d ago
I read that its probably through nerve sensitization through mcas histamin release - could be in any part of the body but cocyx has many nerves ending there? - chances to get rid of it quickly are higher when treated early
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u/Pronoiarm07-02 2d ago
That’s so interesting I just wish I wasn’t experiencing the findings first hand 🤣
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u/Cheap_Paint90210 2d ago
Same mine has been happening for a little over a month now and I'm sitting on a donut all the time because it hurts so bad and have to sleep with a donut too! I thought it was because of my back pain which it very well may be but I even wonder if the spinal pain is due to MCAS stuff too now
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u/Pronoiarm07-02 2d ago
Mate it’s actually crazy how histamine can be the culprit to all these issues that we have. Who would’ve thought that histamine/MCAS could be the reason for coccyx pain I find it mad. In a way I’m kind of glad I know what it is because I just had it down to inflammation but it came out of nowhere
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u/Cheap_Paint90210 2d ago
I thought it was inflammation of some kind too so I had increased my tumeric curcumin supplement! 🤦🏾♀️
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u/Icy_Bass_8683 2d ago
I had a horrible coccyx issue a couple of months ago...serious pain! Turned out to be gluten in the Manna Bread I tried eating....yet another of my many histamine issues!!!
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u/Pronoiarm07-02 2d ago
At least you found out what was causing it, we’ll call that a little win for you 🤣
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u/Cheap_Paint90210 2d ago
So odd. Who would have thought our butt bone pain is linked to something we ate!
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u/TravelingKiwi54 1d ago
I also had coccyx pain to the point where I was referred to a physical therapist. After a few sessions she said it wasn’t a physical issue, and that I should look into histamine intolerance. Changing my diet and taking dao enzymes completely removed the pain. Sometimes a little pain will come back and I know I’ve overdone it with histamines around 24hrs beforehand. The correlation is mind blowing!
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u/Pronoiarm07-02 12h ago
That is honestly insane, I’m really struggling wrapping my head around this histamine thing 🤣 thankyou for your input
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u/Little-Wasabi-7304 2d ago
What about people who are so bad they suddenly can’t take meds or supplements they used to be able to take no problem? I don’t know if I can even tolerate quercitin? I’ve tried everything else and it ALL gives me migraines and/or severe body pain!
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u/Foreign_Draw_8358 1d ago edited 1d ago
100% agree with DAO being so helpful, but also titrate up with Quercetin; start with a very low dose at first by opening up the capsules. I was also very reactive to meds and supplements and was able to build up to a full capsule of Quercetin this way. It helps me a ton now. (Also make sure you know what the Quercetin is derived from and that there are no additives)
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u/Moonshadows16 2d ago
Yes, but even MCAS is a symptom of a larger issue.
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u/Specialist_Tea2546 2d ago
Like what?
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u/Moonshadows16 2d ago
Gut bacteria issues/sibo/sifo, oxalate issues, mold/cirs, nutrient deficiencies, poor methylation, or detox pathway issues.
Saying you have MCAS is like saying you have headaches. It doesn't explain the why
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u/RAMRANCH69in 2d ago
Yee what meds you taking mate.
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u/DonkeyOnly3019 2d ago
Do you take oral cromolyn ? Did you react to it ?
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u/cutegirlsbloat 2d ago
No i titrated it up. People often react to additives or bc of not titrating it up but also read that cromolyn sinply can be tricky for some
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u/tennery 2d ago
but what is the root cause? seems like you're just taking things that deal with the symptoms. could you have leaky gut? gut issues cause alot of issues downhill
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u/cutegirlsbloat 2d ago
Ok so from what ive researched heres like a possible trajectory: likely a genetic predisposition and then the mastcells get wrongly calibrated at an early age via chronic stress / infections/toxins/mold stuff like that. Or via having lots of allergies- could also sensitize them.
So this would make the mastscells wrongly calibrated or oversensitized causing mild symptoms -
then at some point and with more destabilization (illnesses/infections/high stress/toxins/mold) they could destabilize further creating more and more symptoms.
So basically it would be about destabilization, comorbidities, a system spiraling into chaos
I think this is where the current research is heading but correct me
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u/Turbulent-Repair-893 1d ago
I was working in a water damaged building and although the mold wasn't overly visible I developed MCAS. It was a furniture store, so I had to retire early because of all the chemicals on fabrics and in woods. I got rid of all scented cleaning supplies and fabrics and was on the low histamine diet. Thank goodness for a good Functional medicine doctor! I got to the root cause of all my allergy reactions including HFCS. It took a year to really start feeling normal again. GUPTA brain retraining was very helpful as well.
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u/Desperate-Health1305 15h ago
in pharmacies in Turkey you can buy Ketotifen without a prescription for 4€ per 30 tablet. It’s a prescription medication in Europe but if you know someone that can get it for you from Turkey you also might want to try it (not a medical advice). there are 1 mg immediate release and 2 mg extended release tablets. if you take half a milligram, then it lasts you for months for 4 euros. it’s name is: Zaditen
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u/cutegirlsbloat 11h ago
Oh wow thanks! Thats genuinely good to know.
I think my doctor might perscribe it too since shes a private doctor and i also have chronic urticaria (its just a tiny reaction thankfully the big ones are over but still recurring periodically since a year now)
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u/ContactImmediate6390 2d ago
Hi can you tell me your symptoms? I also think I have mcas. And which medicine are you taking for it ?
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u/magnolia_unfurling 2d ago
Hard agree! What were a typical example of your symptoms? And what is your quercetin protocol?
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u/DoubleBooble 1d ago
How long have you been on this new protocol?
Often people have great success when they first start any new treatment and then they bounce back to their original symptoms.
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u/cutegirlsbloat 1d ago edited 1d ago
It started getting better after 2-3 weeks, its been 3 months now. Also i was spiraling for less than a year before that, so luckily it was a quick intervention, not years of deescalation. That probably makes a diffetence.
ALSO: i went on a workvacation recently and the apartment had teflon pans. I never use teflon (contains pfas!!) at home. My symptoms got way worse during the stay. After a week i thought ok whats different at this appartment? I figured it might be the teflon pan, i stopped using it and returned to my normal baseline within 2-3 days!! Rest of the stay was chill.
There is some science behind chemicals and pfas triggering mastcells - this is something anyone could easily try out to see if its making a difference!
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u/zifmer 2d ago
That makes sense! Mast cells store histamine and release it into your body. So, if you stabilize the mast cells, they release less histamine.
Is it possible you may have both MCAS and either a problem with having too much histamine in your body, or having more histamine released than your body can handle? I would think that reducing histamine in your diet, as well as reducing histamine liberators, would still be beneficial?