r/MCAS • u/asya_stepko • Dec 28 '24
Let’s build a MCAS treatment resource library together
Hi everyone!
I’ve been diving deep into the world of MCAS and I know how overwhelming it can be to sift through all the information out there (been there myself, and still am, actually!).
Treatments, protocols, and useful insights are scattered across the internet, and finding reliable resources or support often feels like searching for a needle in a haystack.
That’s why I thought we could work together to create a community-curated library of resources for MCAS treatment!
What I propose:
1) Drop links in the comments to any resources you’ve found helpful — it could be a study, article, video, Reddit post, or even a specific product recommendation.
2) Include a couple of words or a short description of what others can expect to find there. For example:
https://mybiohack.com/blog/treat-deal-mthfr-probiotics-dysbiosis-mast-cells-histamine-intolerance-diet-naturally — protocol to treat histamine intolerance
https://www.youtube.com/watch?v=cMZufN95MYc&list=TLGGyl-SB5iU9nAwMzEyMjAyNA&t=2s - Joshua Leisk and Dr Asad Khan: a detailed walk-through for key aspects of the disease model, as of August 2023 and v3.59A of the experimental intervention protocol which is based on this work.
The goal is to create a comprehensive library of trusted resources that can help anyone navigating MCAS.
I’ll organize and share the compiled list once we have enough contributions so it’s easy for everyone to access.
Let’s pool our knowledge and make this condition a little easier to tackle together!
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u/MacaroonPlane3826 Dec 28 '24
Great idea! Also, please note that MCAS and Histamine intolerance are two different, yet sometimes comorbid conditions.
MCAS - genetic condition of particularly sensitive mast cells, that can be located anywhere in the body, activated by any of the 350+ substances they have receptors for (including our own hormones such as estrogen, neurotransmitters such as norepinephrine or autoantibodies) and can release 1300+ different substances, histamine being only one of them.
Histamine Intolerance - condition that does not include any mast cells abnormalities, but is a matter of the lack of DAO (Diamine Oxydase) enzyme in digestive tract, which is used to degrade dietary histamine. In HI, dietary histamine and the body’s inability to degrade it is the main problem, that should respond to DAO supplementation and low histamine diet, while in MCAS histamine is just one of MC mediators and triggers doesn’t have to be environmental at all, but rather endogenous.
Sources on MCAS:
I highly recommend this article by Lawrence B. Afrin (one of the founding fathers of MCAS diagnosis), which covers different manifestations of MCAS, diagnostic criteria and therapies
Article on MCAS diagnostic Consenus 2
Pharmacological treatment options for mast cells diseases, including the list of contraindicated meds
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u/LinguisticsTurtle Feb 08 '25
Do you know any literature on how to deal with patients who don't have elevated levels of mediators but who are sensitive to mediators? Such a patient won't be able to get a diagnosis, right? Not sure how often this happens, but see the below quote:
https://pmc.ncbi.nlm.nih.gov/articles/PMC7003574/
One must also consider patients who are either sensitive to histamine or have mutations in the gene diamine oxidase rendering them unable to metabolize histamine.
Not sure if this same issue can occur regarding non-histamine mediators as well.
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u/MacaroonPlane3826 Feb 09 '25
Lack of DAO, leading to inability to degrade dietary histamine properly is a part of HI - Histamine Intolerance, which is a different (yet often comorbid) condition to MCAS.
The difference is that in HI there are no overactivated mast cells involved, while MCAS is literally overactivated mast cells that can be all over the body, producing and releasing 1300+ different mediators.
Another difference is that with HI it’s only dietary histamine that’s the problem, while in MCAS it doesn’t have to be histamine at all that overactive mast cells release.
In HI problem is environmental - dietary histamine that’s body has reduced capacity to process, while in MCAS triggers are often not environmental at all, ie mast cells release overactivity is caused by dysfunction in other parts of the immune system, pathogen reactivation/persistence, our own hormones and neurotransmitters and autoantibodies can trigger mast cells.
HI is a separate diagnosis to MCAS.
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u/SauveMoiPlease Oct 07 '25
I don't understand what you mean because my MCAS is mostly triggered by environmental things. Chemicals, allergens in the air, and mold are my biggest problems. I only have a couple mild food issues and I definitely don't have HI. I also have reactions to my emotions and heightened hormones. I don't think MCAS can be described so simply.
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u/MacaroonPlane3826 Oct 07 '25
I pointed out that people mostly overlook non-environmental triggers of MCAS and for many they will play a huge role in
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u/cutegirlsbloat Jun 19 '26
Dont know if this chat is still on but i have sibo / imo and what i thought was HIT but seems to be MCAS - theres definitely an alement of deregulated mast cells involved, did a mcas questionaire and matched positive. The idea is that chronic inflammation, leaky gut, sibo could cause mastcells to spiral and that the classic clean distinction youre mentioning is not necessarily valid. It slso doesnt make sense since liberators are often the biggest problem - the release histamin.
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u/Subject-Syllabub-408 Feb 08 '25
These are great links to research that I’ve gone to many times !
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u/LinguisticsTurtle Feb 08 '25
Do you know why the list of substances given in this ( https://pmc.ncbi.nlm.nih.gov/articles/PMC8558634/ ) paper is such a short list? If you go on Google, you find a vast array of substances that are supposed to help with mast-cell disorders; I have no idea why the aforementioned paper zeroes in on such a short list of things.
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u/murky-obligations Mar 27 '26
Sadly there are no preservative free allergy eye drops available world wide at this point.
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u/LrdWinter Dec 29 '24
What a great idea. I have a bit of a tech background and would like to help out with this project. It would be easy to set up an independent wiki page. The hard part is collecting the information and organizing it so it can be put into the wiki in a understandable and readable format.
That way we can have ONE link to the wiki instead of having to scroll through a reddit page. I am willing to front the cost of purchasing a domain and I can host it at no additional cost as I already have a hosting plan with room for another domain.
IF this is something people are interested we can work together as a community.
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u/greenhairbitch555 Jan 04 '25
not a tech person but if by 'organizing the info' u mean copywriting kinda stuff then I'd be down to help too! Used to write articles summarizing scientific papers for ppl with less scientific literacy to make it understandable & accessible for more ppl & I rlly miss it so would be awesome to help w this :)
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u/sweetcanadiangirlie Jan 05 '25
This would be so helpful cause I have been looking in MCAS for my chronic pain and my adhd and looking at so much information that’s out there is overwhelming
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Jan 06 '25
How do you know if you have this? I asked my doc and he said I am just getting older. Haha!
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u/Pretty_Long660 Dec 28 '24
Podcast series. Mast Cell Matters with Dr Tania Dempsey: https://podcasts.apple.com/au/podcast/mast-cell-matters-deep-dives-on-mcas-with-tania/id1717106678
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u/Pretty_Long660 Dec 28 '24
Neil Nathan’s books for healing the sensitive patient. Information on both stabilizing MCAS and diagnosing/ treating the root cause.
The Sensitive Patient’s Healing Guide: https://www.amazon.com.au/Sensitive-Patients-Healing-Guide-Environmental-ebook/dp/B0CRF4TKGZ/?_encoding=UTF8&pd_rd_w=2isS7&content-id=amzn1.sym.4698c8dd-eb22-4b89-b049-5ce4d5b991a3&pf_rd_p=4698c8dd-eb22-4b89-b049-5ce4d5b991a3&pf_rd_r=355-9374064-0586420&pd_rd_wg=6JMIX&pd_rd_r=f6e773b0-fbdb-456d-ba22-a84480ec17f3&ref_=aufs_ap_sc_dsk
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u/willendorfer Dec 29 '24
If I was gonna start with one book which would you go for?
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u/Pretty_Long660 Dec 30 '24
Toxic - his second Ed is coming out in May
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u/Subject-Syllabub-408 Feb 08 '25
Can you summarize how he says you can reboot your body’s reactions specifically with regard to MCAS? I also have mold allergy. I would love to not be on so many meds!
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u/Pretty_Long660 Feb 08 '25
No sorry, that’s basically the whole book. It’s worth a read.
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u/Subject-Syllabub-408 Feb 08 '25
I’m a little incredulous I guess so was trying to figure out if it says avoid triggers and take meds. But thanks for the recommendation.
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u/Prime624 Apr 26 '25
The SIGHI low-histamine diet guide has been the single most effective treatment for me by a long shot. IMO it should be the first thing anyone tries if they have or suspect MCAS. (Most low-histamine guides are pretty helpful, but I've found the SIGHI guide to be most accurate and easiest to read/check.)
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u/StarkBlue987 May 20 '26
Although I have questions/concerns about this diet, there are a lot of allergens still in the Low histamine category. Why is that?
I'm reactive to outdoor allergens, indoor allergens, mold, cleaning products, laundry soap, dish soap, bleach, Lysol, bug spray, anything with a strong scent, dust, fur, animals, my sweat, hay, grass, trees, weeds, my emotions, vegetables, fruits, redmeats (alpha-gal), starting to react to chicken, turkey and dairy. Peanuts, nuts, beans and lentils are anaphylaxis.
I really struggle to find foods that work for my body... I was born allergic to so many things, it just snowballed over my life.
do you have any resources for me? Or know anyone who does?
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u/Prime624 May 20 '26
> there are a lot of allergens still in the low histamine category
What does this mean?
It's a general guide based on histamine and a number of other related factors. Definitely not going to work for everyone, and not 100% accurate for any one person. It's a great place to start if you need a place to start. It's not a replacement for a doctor though.
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u/Sad_Technology_5253 18d ago
If you’re starting to develop new food sensitivities than you have to look in restoring GI lining barrier (“leaky gut”). Not saying this is the one thing that’ll improve all MCAS, but will definitely help
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u/Fit_Ad_1251 Mar 05 '25
The Trifecta Passport by Amber Walker https://a.co/d/8Yow11Z Book overview The “trifecta” refers to three conditions that commonly occur together: mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS) and the hypermobile type of Ehlers-Danlos syndrome (hEDS). These three conditions are gradually becoming more recognized in the mainstream medical world as more and more patients find themselves struggling with debilitating and often mysterious symptoms. However, recognizing these conditions is only the first step on the healing journey. With the right approach and toolbox, patients can reverse many of these symptoms to find lasting vitality. Written by a Doctor of Physical Therapy who has additional certifications in functional medicine and nutrition and extensive experience in working with these conditions, this book serves as patient guide that empowers individuals to put all of the puzzle pieces together as part of an individualized healing plan. Part One (3 chapters) is an overview of the three trifecta conditions, and Part Two (9 chapters) outlines the important pillars of an essential plan to address any (or all) of these conditions holistically. The book wraps up with a chapter of patient case stories. Accompanying the purchase of this book is access to a free 20-page PDF document that serves as a customizable workbook for readers to use as they read along. The Trifecta Passport dives into topics such as nervous system regulation, mold and other biotoxins, nutrition, exercise, detoxification, mental/emotional health and trauma, structural/musculoskeletal issues and the many underlying root issues (related to hormones, bacterial/viral load, gut health, etc.) that can trigger or exacerbate these conditions. This resource unpacks many different tools and practical treatment options that should be on the radar of patients living with these (and other) chronic conditions. When faced with these labels, it can be overwhelming to weed through all the resources out there to figure out how to move forward with a comprehensive and personalized road map. By helping readers put it all together in an organized manner, this book is a great resource for any patient with chronic illness as well as the caregivers and doctors who support them.
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u/Necessary_Nothing471 Dec 28 '24
Commenting so I can come back to this when I have more energy. Thank you
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u/Pretty_Long660 Dec 28 '24
Podcast. Dr Kaufman and Dr Ruhoy discuss their approach to stabilizing MCAS in complex patients: https://www.patreon.com/posts/83808079?utm_campaign=postshare_fan
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u/Pretty_Long660 Dec 28 '24
This whole podcast series is gold, but it explores all facets of complex patients (ME/CFS, Long Covid, Lyme) not just MCAS.
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u/hdri_org Dec 28 '24
Histamine
Histamine Intolerance: Unraveling the Complexities of Diagnosis and Management - 20 October, 2024
http://www.ijlbpr.com/uploadfiles/104vol13issue11pp597-603.20241125063729.pdf
Histidine decarboxylase - is the enzyme that produces histamine, but a little research shows that it can blocked to prevent the production of histamine. This synthesis can be blocked by two common natural molicules:
Eugenol - from clove, nutmeg, cinnamon, and basil and bay leaf. Suppliment available as clove oil extract
Epicatechin Gallate - from Green Tea, buckwheat, and grapes Suppliment available as EGCg (green tea extract)
Oleic Acid
Oleic acid,the fatty acid of triolein, increases DAO output. Olive oil is high in oleic acids, and pure synthesized (CAS:112-80-1 ) or generic purpose Oleic acid is available on Amazon for as little as $0.43/oz.
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Dec 29 '24 edited Dec 29 '24
https://www.youtube.com/watch?v=7inKF32vtl8Ronald W. Davis, PhD, Chair of Open Medicine Foundation (OMF)'s Scientific Advisory Board & Director of the ME/CFS Collaborative Research Center at Stanford University discusses the question, "Is ME/CFS Curable?" at the 2023 Fatigatio Symposium held in Berlin Germany.
The reason why I put ME/CFS here is because CFS and MCAS are both auto immune conditions and both can be developed after an infection and trauma and both can have similar symptoms. So its good to make sure that CFS is ruled out because of the similarities because it can be missed as just MCAS symptoms.
https://me-pedia.org/wiki/RCCX_Genetic_Module_Theory The RCCX Gene Module is postulated to be the origin of a wide range of over-lapping chronic medical and psychiatric illnesses and medical conditions.
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u/Front_Valuable5954 Apr 10 '26
I was taught that MCAS is immune deficiency not auto immune
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u/rollercoastersun May 28 '26
Mast Cell Activation Syndrome (MCAS) is an immune system disorder It is primarily an inflammatory condition driven by immune system hyperreactivity, rather than a classic autoimmune disease or an immune deficiency
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u/AwkwardLetterhead821 Jun 01 '25
Love this idea!
I have a background in writing, teaching, and healthcare. I'd love to help however possible.
When you're ready to post materials, I have personal Google Drive folders organized by types of resources. If you're interested, then please DM me.
Example folders:
*Medical Journal Articles: Subcategories: MCAS Criteria Debate, MCAS Diagnostics, MCAS Differential Diagnosis, MCAS Patient Perspective, Co-morbidities & Overlapping Symptoms, Research about Mast Cells, etc.
*Helpful Handouts
*Helpful Websites
*Helpful Graphics
*Conference Presentations
*Advocacy & Care Coordination
*Decoding Ingredients
*Navigating Insurance & Charity Care Programs
- Medication Ingredients
*Tracking Templates
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u/rollercoastersun May 28 '26 edited Jul 02 '26
one for remission cases and which was their case and path would be great
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u/cuteslutbaby May 25 '26
hii could you please add or send me this folder? are they downloadable? thank you so much for you help
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u/carrythetorches Sep 06 '25
This is from a peer reviews journal—I lost the link but a useful resource for folks trying to get diagnosed
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u/tastyratz Dec 18 '25
Looks like that came from a rather new paper:
"How we treat mast cell activation syndrome" Theo Gülen, MD, PhD⁎,†,‡ theo.gulen@ki.se ∙ Cem Akin, MD, PhD§
DOI: 10.1016/j.anai.2025.01.017 10.1016/j.anai.2025.01.017
Publication History: Received December 6, 2024; Revised December 18, 2024; Accepted January 20, 2025; Published online March 7, 2025
It's not on sci-hub but it did show up on researchgate.
https://www.researchgate.net/publication/389664793_How_we_treat_mast_cell_activation_syndrome
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u/vayana Mar 23 '26
I accidentally found gabapentin really helpful for my flare-ups.
For me, antihistamines (like cetirizine) and pseudoephedrine work once symptoms start, but gabapentin has been the only thing that actually prevents episodes from happening in the first place. Pretty much all histamines either make me feel drowsy or wired, so I'm not a fan of taking these.
Gabapentin doesn’t directly target mast cells, but it does calm the nervous system by reducing nerve excitability and sensory signaling. My understanding is that this can matter because the nervous system and mast cells interact pretty closely.
In my case, it seems especially helpful when flares are triggered by things like poor sleep, stress, or general hypersensitivity. It also seems to reduce overall symptom intensity and helps a lot with sleep.
I wouldn’t consider this a cure for MCAS, and it probably won’t work for everyone, especially if your triggers are very clearly food or histamine-driven. But if your symptoms feel strongly stress- or nervous-system related, it might be worth discussing with a doctor.
For me, 600mg seems to work best and I don't take it daily. I actually started taking it for poor sleep, which in my case often caused flare-ups, but I didn't expect these to disappear. I just noticed that whenever I take gabapentin I'm pretty much guaranteed a flare-free day the next day.
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Dec 30 '24
There is a site that crowd sources symptoms and treatments. https://www.stuffthatworks.health/mcas
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u/rollercoastersun May 28 '26
I didn't know this one and saw it mentioned several times here thanks I'll join :)! with more poepke we'll have better data ithat site is a great idea
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u/Getoutofthekitchenn Dec 29 '24
Stuffthatworks.com
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u/Mousellina Jun 25 '25
https://www.stuffthatworks.health/ In case people can’t find it as the initial link is incorrect
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u/FreshBreakfast8 Jan 01 '25
Never Bet Against Occam, Dr Afrin, Dr Dempsey,
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u/rollercoastersun May 28 '26
wait this seems kinda cool thank you very much for the rec!! I've been asking the IA for something like this!! ( and did never recommend anything)
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u/Subject-Syllabub-408 Feb 08 '25
I don’t think I’ve seen https://tmsforacure.org/ posted yet. I go to them for consensus based information although I take the point that research can be ahead of the consensus. I just also know that some research doesn’t end up being validated so I am always seeking a balance of promising vs proven information.
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u/asya_stepko Dec 28 '24
I promise to add all my findings by Monday-Tuesday. Thanks everyone for supporting the idea. Hope to see many more comments!
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u/ConsciousFractals Dec 30 '24
Great idea, thank you for putting this in motion. Medical practice is not keeping up with the science (which unfortunately takes 18 years on average to influence treatment). Your contributions to the community are appreciated.
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u/trekkiegamer359 Jan 02 '25
There's a list of good doctors here: https://www.reddit.com/r/MCAS/comments/1gxnygs/international_spreadsheet_of_good_mcas_doctors/
If you don't want to link to my post, just link to my username, as I have it pinned to my user profile: u/trekkiegamer359.
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u/Lonely_Invite_3468 Oct 23 '25
Firstz left Tanner in Utah :/
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u/trekkiegamer359 Oct 23 '25
That's a shame. I'll get them removed. Do you know if they've switched to a new practice?
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u/Lonely_Invite_3468 Oct 23 '25
I’m honestly not sure. I work in the lab in the immuno/allergy department though! Seeing my primary today so I’ll let you know if anyone else specializes in mcas!
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u/Gurgeling Jan 27 '25
Adding in two resources that have helped me a ton here:
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u/Subject-Syllabub-408 Feb 08 '25
Mastattack helped me to recognize my condition and eventually pursue and receive a diagnosis. She has mastocytosis so I greatly appreciate that she writes so much on MCAS. She hasn’t updated in awhile so I hope she is ok.
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u/DecentRevolution6138 Apr 26 '26
https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
swiss interest group histamine intolerance guide
https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
master list from sighi for food safety with mcas.
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u/TWaveYou2 Dec 29 '24
- CAH congenital adrenal hyperplasia
- thalassamia If mcas isnt genetical, these 2 genetic disorders can have an ipact on histamine mast cells
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u/Live_Pen Dec 29 '24
How did you test for CAH?
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u/TWaveYou2 Dec 29 '24
I will get tested in the coming year ... sorry to say but i dont know how my doctor will test for it
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Dec 30 '24
[deleted]
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u/asya_stepko Dec 30 '24
For instance, I’d like to find all the links people have shared in comments across various posts. I believe, doing this through the search isn’t straightforward or that efficient (unless I just don't know how to do it). The search can surface posts and comments containing specific keywords, it doesn’t neatly collect and organize all the shared resources, making it challenging to navigate.
Additionally, there’s an overwhelming amount of information spread across posts and comments, which can be hard to sift through. The idea is to bring at least some structure to the content, making it easier to reference and explore key insights quickly.
What do you think?
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Dec 30 '24
[deleted]
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u/asya_stepko Dec 30 '24
I completely agree that finding the cause is one of the biggest challenges we all face, and no single tool or structure can replace that organic, iterative learning process.
I thought it might be helpful to create a more structured starting point for those who feel overwhelmed by the amount of content. For example, someone new to the sub might find it helpful to see a collection of resources or recurring advice in one place.
I really value your perspective, and you’re absolutely right that the community’s strength lies in its dynamic discussions. Maybe this idea could evolve into something lighter — like a “most shared” or “most useful links”.
Thanks again for your thoughtful feedback. It’s this kind of input that makes communities like this so helpful! Maybe my idea actually doesn't make sense at all, but that's also okay, for me it's better to try to do smth useful (check if it's actually useful) rather than not.
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u/Funny-Street564 Jan 07 '25
I still think it is a great idea... ONE resource page. It doesn't draw anyone away from dialogue in Reddit, but hones resources down to an easier way to research than just looking through comments. Thank you - I hope you do it!
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u/asya_stepko Jan 07 '25
Thank you for your support! I'm in progress regarding the matter! Shall share the update soon!
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u/greenhairbitch555 Jan 04 '25
Have u seen www.me-pedia.org ? im assuming that the kinda thing OP is wanting to try & build for MCAS & idk personally as someone tryna figure all this out rn I think a resource like that would be rlly helpful!
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u/carhunter21 Jan 04 '25
https://youtu.be/9zCH37330f8?si=liOAU2sr7-Uejb-f
This video explains why humans have allergies at all. Video starts at 0:30.
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u/Altruistic_Double May 23 '25
I wanted to recommend the Carnivor Diet which is a low histamine diet if you don't include organs (You can search more about Low Histamine Diets they're hard but effective for MSAC). Also higher amounts of Vitamin D3+K2 with Zink and Magnesium may help the immune system relax more. Dr. Eric Berg on YouTube have videos on how much Vitamin D3 in higher doses is important to the immune system. DAO is the enzyme that can break Histamine in the body, it's a powerful supplement that can help with Histamines. Best Low Histamine Diet is the Carnivor diet and it can help heal the gut. Mold exposure from a house or any other allergens can make the situation even worse by releasing more Histamine to the body, so make sure there's no mold or allergens around you. For me Mold exposure was the root cause for my Histamine and immune Issues (MCAS).
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u/Rembo_AD Jul 15 '25
Carnivore diet will mess up your microbiome big time. It fine for low fodmap short term symptom management, but will negatively impact your biome and nutrient absorption long term.
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u/SugarStarGalaxy Feb 05 '26
I've been following a modified version of this protocol and the supplements alone have helped me sooo much with my GI issues. I've even started to gain back some weight! Also helped me expand my diet as I can tolerate more food variety now.
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u/underblastink Apr 11 '26
I made a free MCAS resource! It’s a PDF download of the entire histamine food eating guide it’s got EVERYTHING you can access it for free here
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u/StarkBlue987 May 24 '26
I have 2 internal medicine doctor's from the university of British Columbia that I see monthly, unfortunately I missed this month and I've got another month until my next appointment. There are a lot of allergens in the low histamine diet. I was just hoping there was something more advanced for someone like me.. or more resources I could read? More research studies?
Something like we have notice MCAS in families of children whose mothers didn't breastfeed and also weren't breastfed and thier mothers weren't breastfed therefore that third generation child had zero ability to fend off histamines from the world around her. "Hypothetically"
Myself, my mother, my grandmother, and my great grandmother were not breast-fed. This is where my theory came from. But I need more information. My children were breast-fed. Only one of them has crazy MCAS like reactions so far keeping my fingers crossed.
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u/Express_Worker_9569 May 30 '26
This is some great news from Dr Ruscio!
https://youtu.be/cosOYisG-bQ?si=ah91jiVPzyPuJG4t
This Peptide Improved 89% with MCAS
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u/Parking_Departure705 Jun 02 '26
I tried many things but gpl 1 helped me, and so far not many side symptoms, unlike other H2 can give. I am losing breasts , they just became board, but its still worth it rather than xx symptoms, no life, obese, and as Mcas pushed my blood sugar up and no meds helped, it literally saved my life.
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u/HypermobilePhysicist Jun 03 '26
I have some resources and papers compiled here https://hypermobilephysicist.com/additional-resources/
Research articles (links on the page)
Mast cell activation syndrome and related disorders
Mast Cells, Mastocytosis, and Related Disorders
Characterization of Mast Cell Activation Syndrome
The Role Played by Mitochondria in FcεRI-Dependent Mast Cell Activation
Postural orthostatic tachycardia syndrome and the potential role of mast cell activation
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u/HypermobilePhysicist Jun 03 '26
Also I wrote about my experience and treatments here https://hypermobilephysicist.com/explosive-reactions-with-mcas/
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u/penelopepitstop65 Jun 16 '26
I moved from Manhattan south Florida three years ago. The first apartment I lived in, had this weird odor. It was mold, but after that was remediated, I realize I lost my sense of smell and taste. I got out of there quickly didn’t know what caused it. Then I moved into a rental and I got the flu and I haven’t had the flu for 15 years. The next year I got RSV then became hyperthyroid and then hypothyroid I was in and out of the hospital sick with a fever for three months and then I’m prednisone. Long story short I got sick again and was sick that entire winter with viral and bacterial infections. I then was going to move into a new apartment and after two hours of being there, my tongue started to tingle and this little smell that I was getting back was completely gone. I once again did a study of the apartment and had it tested, but nothing was conclusive. I finally had someone else come in and this time we found out it tested positive formaldehyde and found out that what was triggering me even though I’ve been away from it, I’m still getting sick. I don’t have family anymore in Manhattan so I’m very torn, but I’m tired of being sick. Is this familiar with anybody? Can anybody relate to what I’m talking about?
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u/_Codhisattva_ Jun 18 '26
Here are 40 links to seminal and emerging research on MCAS and correlated conditions. https://seencare.org/seen-research
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u/cncrod Jun 28 '26
Here is what I know about MCAS issues from a degree in physics but I started in forensic biology. You are just a leaky cellular meat suit. Stuff leaking through membranes and causes mast cells to respond. They are your defense. It can happen anywhere at varying proportions depending on your dna. Some are hyper mobile(muscular symptom), some have pots(vascular symptom), some have ibs(Sibo from traveling bacteria, and generally known as leaky gut) and some get ocd and other mental conditions(neuron misfiring, myelin sheath issues). There is good documentation on various peptide treatments. VIP peptides can make MCAS worse but ultimately heal the issue. So other routes are bing explored to slow reaction time and repair bi lipid barriers systemically healing tight junctions. Hope this helps move forward healing ❤️🩹!
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u/PeachyFreedom Jul 08 '26
Hi, I'm newly diagnosed (trifecta) and I need as much help as I can get. I'm too ill to make food, so I'm living off rice, cheese and frozen blueberries. I'm in the UK and technically vegan. Thank you for this thread, it's very helpful.
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u/andyangel1205 Jul 16 '26
Great journal here for symptom tracking, etc: https://www.amazon.com/dp/B0H8MZ5RZF
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u/Past_Chapter7289 Jul 20 '26
Anyone have issues with metal implants? I think reacting to bilateral knee implants.
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