Mast cell activation syndrome Puns

Hello,

I have CPTSD from early childhood trauma and I know from reading research that this is connected to PMDD. (It just keeps getting more fun, lol). I notice a lot of people here are mentioning having a good result with antihistimines. Antihistamines are often helpful with a third diagnosis of mine: mast cell activation syndrome (MCAS). If you have food allergies (milk and wheat/gluten seem to be common), flushing, weird rashes, hives or migraines, these can all be symptoms of MCAS.

The connection is by no means a proven one, but I suspect the MCAS may be related to the CPTSD. Mast cells are a type of immune cell activated by stress (by corticotropin releasing hormone) and a PTSD brain is one that has the body in a state of stress more so than a non-PTSD brain.

Here is an article mentioning the PTSD/mast cell connection: https://pubmed.ncbi.nlm.nih.gov/29302258/

Another article about stress, brain injury and mast cell activation: https://www.frontiersin.org/articles/10.3389/fncel.2019.00054/full

I wanted to mention a few things that have helped me in case it would help anyone else. Things that help with one of these conditions tend to help with symptoms of all three.

• borage oil (it has more of the active ingredient than evening primrose oil does. I had to make it through one entire cycle before the effects were apparent. Reduced cycle symptoms globally including pain and mood symptoms)
• EPA only fish oil
• ketotifen (a mast cell inhibitor)
• xolair (suppresses IgE dependent mast cell activiation)
• benadryl (an antihistamine)
• dong quai (a female specific adaptogen and suppressor of brain inflammation- this one has been superb for me for PMDD)
• fisetin (an anti-inflammatory flavonoid - also great for PMDD for me)
• high dose thiamine

I also notice that some people here respond favorably to progesterone increases, while progesterone makes other people worse. I'm in the second camp. Bioidentical progesterone makes me super depressed. I have a history of feeling awful from a couple days after ovulation to when my period starts. I'm testing whether a BCP will be helpful for me and whether I will be able to tolerate it.

I think it's important for people to share both what does work for helping them get better and what doesn't work. It's useful both for calibrating the true effectiveness of different proposed solutions and treatments that are floating around the community and also to serve as a reminder here to everyone that someone else's successful treatment might not have an effect on you, and that's okay! Let's not give up and let's keep figuring this shit out together.

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Background: male, 20-25, previously very active cognitively and physically (4-5 days of exercise/week).

Symptoms: I've had long covid for 1 yr, 7 months. Symptoms are most similar to ME/CFS. Chronic fatigue, brain fog, body ache, malaise, headaches, nausea, post exertional malaise, etc.

Lifestyle b/c of long covid: at home almost every day, not able to do any form of intense exercise, socialize infrequently outside of my family (1/week), not driving distances > 10 min, 9+ hours of sleep every night, naps and lying down doing nothing multiple times a day, working remotely + taking on smaller workload b/c of long covid symptoms

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Ruling out MCAS

I've read many things about people thinking long covid is related to or caused by MCAS. There's a lot of conversation too about the Low-Histamine Diet.

I ran two experiments and closely tracked my symptoms to learn if low / anti-histamine could help my long covid.

Experiment 1. I followed the antihistamine protocol in this paper. I took Fexofenadine 180mg twice daily + Famotidine 40 mg once daily for four weeks. I was also on a low-histamine diet during this to make the impact of this protocol even more pronounced (but not fully low-histamine diet. I broke it during 3-4 meals throughout the month).

There was no noticeable improvement.

Experiment 2. A two-week elimination diet to rule out both low-histamine and other food insensitivities (dairy, gluten, shellfish, etc.) as a cause of my symptoms. For two weeks, I ate only: Chicken, Salmon, Apples, Pears, Blueberries, Melon, Grapes, Almond milk, Pumpkin seeds, Chia seeds, Quinoa, Rice, Oat, Carrots, Sweet Potato, Artichoke, Bok Choy, Green beans, Lettuce, Zucchini, Broccoli, Cauliflower, Brussels Sprouts, Winter squash, Salt/Pepper, Turmeric, Olive oil.

There was no noticeable improvement, and in fact, my brain fog worsened during this period.

From both of these, I'm concluding that my ongoing symptom

For anyone else who has had their long covid in the form of hypersensitivity/skin pain/inflammation, lately I'm finding more and more research on covid causing MCAS. Unfortunately if the cells are mutated then it's irreversible (sob), but more and more doctors are now giving people with initial covid infections antihistamines in the hope it will block this mutation of mast cells. (This video was very informative, useful diagrams https://www.youtube.com/watch?v=MQN8cS-di4U)

I'm going to start a low histamine diet and take anti-histamines every day to see if that reduces my pain, but was wondering if anyone else has heard of this link and whether you've seen improvements with a low histamine diet?

Looks like I need to cut out tea, coffee, alcohol and _aubergines_ amongst some of my other favourite vegetables. Have also bought £ridiculous amount of Manuka honey. Will update on this post if it helps!

Deep in the throes of a Benadryl hangover rn, so I'll be brief. The chances that POIS is a unicorn disorder with no possible treatment options is very, very slim. Most likely that POIS is a form of Mast Cell Activation Syndrome (MCAS), which is essentially when you develop allergies and autoimmune reactions to things which people usually aren't allergic to.

That is 100% in line with the literature that demonstrates that POIS is actually a semen allergy. All the symptoms of POIS line up PERFECTLY with the clinical descriptions of MCAS (kinda eerie, actually), which means that MCAS is likely the root cause of most POIS symptoms. Think of it as MCAS, but ejaculation is simply the trigger for your specific case.

For me, POIS is simply another component of a mysterious autoimmune disorder that has unfortunately held me back from living the life I know I'm capable of. Most of my known triggers are food-based (soy, corn, sulfites, dairy, too many to list). I also have celiac (another autoimmune disorder), so I avoid gluten ofc.

I plan on meeting with professionals who can formally evaluate and hopefully prescribe me some effective treatments. Preliminary experiments with OTC antihistamines and mast cell stabilizers show great promise. My maniacal vision is to inject some Sodium Cromolyn into my urethra via catheter, as I think that might actually be the silver bullet for POIS if it is indeed a mast cell-mediated semen allergy. Will report back with experimental findings.

So for anyone getting negative tests but still experiencing lingering symptoms especially after a month or two these are all the things causing mine.

Pelvic floor dysfunction is real and once I started doing stretches and being self aware about how much I was clenching, making sure I relaxed my body and retrained it not to clench I felt significant improvement in symptoms. There are videos on YouTube but being self aware made the biggest difference to me.

Lactobacillus overgrowth is common after ureaplasma or mycoplasma, i used preseed every other night for a month an it really helped.

Mast cell activation syndrome is when mast cells release histamine more than they should to things they don’t need to or when you have an abundance of mast cells so when they release histamine it is collectively a lot more than you would normally handle. This syndrome is triggered by many things but a common few are untreated infection (Lyme, ureaplasma/mycoplasma, h.pylori, hiv, hepatitis), high stress, mold toxicity, gut being out of balance (sibo, candida, leaky gut) and underlying food sensitivities.

I had ureaplasma, high stress, mold toxicity from damp house, leaky gut and intestinal candida overgrowth, and a sensitivity to eggs and dairy which came up of 2 different tests 2 years apart. These things get your immune system out of whack and can trigger it to start reacting to unnecessary things.

I treated the ureaplasma with 21 days doxy and 5 days azithromycin then 2 weeks mino and have tested negative after 6 weeks. Im currently trying to sort the damp in the house out but have an air purifier now which has made a huge difference, I have been attempting to de stress through meditation and having a strong word with myself when I feel myself spiralling, I’m taking oregano oil and garlic and going on a low sugar low carb whole food diet for the candida after which I will take Lglutamine for leaky gut, and I no longer eat eggs or dairy. I’m also avoiding high oxalate foods as the residue from molds and candida can manifest as oxalates in your body caused inflammation in various body parts,aches and pains painful urination and vulvodynia. And I’m being aware of high histamine food as this can more easily trigger the mast cells to react.

I now have almost no symptoms and expect to have none once I fully detox from everything.

This was my experience, if any of this rings true to you please look into it. Pain is not normal. It’s your body telling you there’s someth

I have tested negative for all infections. However I have lots of inflammation down there and I react to almost every cream and lube. I have read somewhere about MCAS causing vaginal issues and I suspect that it could be what’s going on with me. I have a white, creamy discharge, am raw and red, and it burns.

Hello,

[Please read the EDIT below first]

I've been living with POIS for 15 years. My symptoms last about 7-10 days, sometimes up to 14 days, and include extreme body heat, red eyes, running nose, lower cognition, memory loss, speech impediment, noise sensitivity, blurry vision, itchy skin, fatigue (sleeping 12 hours) and mood swing.

I discovered I had POIS about 3 years ago after reading a paper by Dr. Waldinger on the subject. Since then, I tried many things that did not work, but recently, I found something that is helping me.

I recently read a post on poiscenter.com about Mast Cell Activation Syndrome and its implication in POIS. I cannot find the post anymore, but you can read about it here. It's a condition that makes you have too much histamine in your body. Histamine provokes allergic reactions, and having too much of it makes you in a constant state of allergic reaction. The symptoms are almost identical to POIS. I read about some medications that can be taken for this. They cannot cure the symptoms, but they can reduce them. And they did for me.

I am currently taking, every day, one medication in each of these categories:

• Second Generation H1 Antihistamines
• H2 Antihistamines
• Leukotriene Inhibitors
• Mast Cell Stabilizers

In addition to that, I also started taking extra vitamin D (cholecalciferol) and vitamin K (phytonadione) following a post about how there were beneficial. I tried them and saw improvement as well.

Overall, I can say that the initial most sever symptoms last for about 2-3 days instead of 7-10 days. Those include lower cognition, memory loss, speech impediment, blurry vision and noise sensitivity. I am still tired and have mood swing for about 4-5 days, but I can function more or less properly. After that, everything is back to normal. And boy, I can really see a difference when I'm out of it. It's like changing the resolution from 144p to 1080p60.

I also read that people with Mast Cell diseases sometimes follow a low histamine diet to further lower the intake of histamine. Because apparently, there is histamine in the food that we eat, like chocolate for instance. I'll check that in the furture and maybe post something about it.

[EDIT]

The anti-histamines ended up not working over a long

Hi everyone! I make "edutainment" videos on YouTube (ever since becoming disabled) and I made one on testing for MCAS. MCAS and mast cell mediated symptoms are common in those with Lyme disease, bartonellosis, SIBO, and other chronic infections so I thought I would make a video on this complicated topic. I remember in the beginning of my MCAS diagnosis it was overwhelming because there are a lot of mediators to test for, many of them are very sensitive to heat, some of them require the patient to be off certain meds (only if tolerated and safe), and there is debate among scientists and doctors about which mast cell mediators are worth testing. This video covers all of that and more!

https://www.youtube.com/watch?v=lLyFcBFKjHs

There are time stamps in the video description box and along the bottom bar so you can skip ahead to each topic:

0:00 intro

2:45 tryptase (and formula)

6:46 heparin

8:27 chromogranin A

10:20 prostaglandins

12:44 urine test instructions!

16:05 histamine

16:38 do antihistamines affect tests?

20:14 leukotrienes

My neurologist suspects I have MCAS because I have eczema, asthma, hives, flushing, and hyper POTS. he’s putting me on cromolyn and antihistamines.

the idea of having MCAS is kind of freaking me out. i have minor allergies and skin sensitivities, but no major allergic reactions really. how do you even tell between a POTS episode and anaphylaxis? has anyone here gone thought that? i’m kinda worried now about randomly having anaphylaxis

So as the title says I am looking for a mast cell activation syndrome specialist in Texas.

I was diagnosed with EDS when I was 23 and have been dealing with a lot of symptoms since then that I now suspect some symptoms have been MCAS the whole time. But more recently things have gotten really out of control and I have ended up going into anaphylaxis twice in the last 2 months and was hospitalized due to the severity of the reactions.

My meds (Xoliar, Zyrtec, and Pepcid) don’t seem to be cutting it anymore and I seem to be reacting to most foods I eat now and I am worried about having more severe reactions in the future.

My allergist is trying his best but he is not a mast cell expert and I feel like there is more we could be doing to help control my symptoms.

Any leads would be greatly appreciated!

When I was first diagnosed with IC about 5 years ago, I went to a urologist who said there was basically nothing I could do for it, except monthly lidocaine bladder installations. Not true! This was devastating at the time. I thankfully learned about urogesic blue, which has been such a lifesaver for me at times and I learned the importance of avoiding triggers. 2 years ago I became bed bound at age 25 and I was diagnosed with mast cell activation syndrome (MCAS).

IC is increasingly becoming recognized as being mediated by activated mast cells. Since I am disabled and unable to work, I am a patient activist and make "edutainment" videos on MCAS, IC, SIBO, and related conditions when I feel well enough. I wanted to share with you this video I made on the link between MCAS and IC that I researched to the high heavens. Gotta put that master's degree to work somehow! In this video, I discuss the overlapping treatments between IC and MCAS (there are a lot!) and I hope that this is helpful to at least one person reading this

https://www.youtube.com/watch?v=WFfl0WnHpI8&t=491s

I make no money off of my channel nor do I give medical advice. I am just a sick person who does a whole lot of research in the hopes that other sick people do not have to suffer as much

45 year old female taking Sertraline and Symbicort daily. Diagnosed anxiety, IBS, periodontal disease and fasciitis.

All of these issues have always been treated separately but I’m wondering recently if they are actually all connected. I received my first Pfizer shot in April and since then my symptoms of all have been for worse. Severe diarrhea and stomach cramps, constant body pain, fatigue, nausea, rashes and hives. I’ve also noticed transient pain in my thighs that seems “deeper”. I’m very sensitive to heat and get almost instantly nauseated. Breakthrough menstrual bleeding also takes place although it’s light.

I’m awaiting a doctors appointment on the 22 but in the meantime, does this sound like MCAS and if so what can I do in the meantime to get back on track? Thank you.

Ive had chronic gastritis for most of my life. My gastritis has been well under control for the past few years since starting treatment for mast cell activation syndrome. Im flaring right now and came across this sub. A lot of posts I see center around finding the cause of your gastritis. I wanted to put this out there because I was only able to get diagnosed when my symptoms started spreading to different body parts but like many of you, I really needed help when it was just nausea, vomiting, and gastritis. Cromolyn was a game changer for me and my treatment. Testing for MCAS is very inaccurate and many doctors have never even heard of this condition. Its a rare condition but only because it is underdiagnosed.

basically what the title says. I joined the sub looking for help and am just now finding out about MCAS so I want to know if there is any difference.

Though commonly comorbid and having been found to be associated in epidemiologic research studies, the pathophysiologic relationship between hEDS, POTS, and MCAS remains a mystery, and some researchers question that there is a common pathologic mechanism connecting them at all. "The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS)" provides a comprehensive overview of each entity, their theoretical overlap, and weaknesses in the research suggesting a common pathology between the three conditions as well as remedies for future research on the subject.

https://wikimsk.org/w/images/4/42/Kohn2019_The_Relationship_Between_hEDS_POTS_and_MCAS.pdf

Abstract: In recent years, an association between hypermobile Ehlers-Danlos syndrome (hEDS), mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS) has garnered attention and patients are increasingly presenting with this triad. However, a real relationship between these entities is unclear due to a lack of scientific validity. We conducted an extensive review of the literature using two different search strategies. A narrower strategy included 88 searches of various combinations of terms for each of the three conditions, yielding 19 unique papers. A broader search included 136 searches of various combinations of terms but included all forms of EDS and yielded 40 unique papers. Of these, only four and nine papers from the narrower and broader search strategies were original research articles. None of these papers resulted from a combination of the search terms for the three conditions. All three clinical entities are controversial in either existence or pathogenesis. **MCAS is a poorly defined clinical entity, and many studies do not adhere to the proposed criteria when establishing the diagnosis. Patients previously diagnosed with EDS hypermobility type may not meet the new, stricter criteria for hEDS but may for a less severe hypermobility spectrum disorder (HSD). The pathophysiology of POTS is still unclear. An evidence-based, common pathophysiologic mechanism between any of the two, much less all three conditions, has yet to be described. Our review of the literature shows that current evidence is lacking on the existence of MCAS or hEDS as separate or significant clin

I just masturbated like 5 times in the last 2 days and I feel fine. I think sometimes masturbation can trigger MCAS, but I think other things like hot showers are more likely to trigger it, but I think if I continued masturbating at this rate, it would start to affect my cognition again and would trigger some kind of mast cell response.

So I'm reading some sources that seem to suggest that histamine intolerance and MCAS are always linked, and others that seem to suggest they are not.

What does everyone think?

Im thinking ofc TA-1 and maybe bpc 157? Though I have read someone say that bpc 157 can cause an histamine reaction in our body, though I havent found any evidence of this.

I'm looking to speak with someone (or multiple people) who has MCAS (Mast Cell Activation Syndrome) who has also had a breast reduction surgery.

I have some questions about my experiences so far with my reduction (it was about 2.5 months ago, on Oct 7th) that I am suspecting might be evidence that I possibly have MCAS.

I've talked to my surgeon about it all already, but he just says things like "You're a puzzle!" "You're a special case!" "You're really in tune with your body!" and the latest thing, he said that surgeons everywhere have been having problems with the stitches that he used on me (to which I replied, "oh I just thought it was my body being weird -shrug-").

I don't have anyone on my medical team (yet) that I can go ask something like, "do these experiences line up with MCAS?" so I figured I'd give this sub a shot!

I searched the sub for "MCAS" but found nothing.

I would rather talk privately about it rather than explain here what's been happening so that I don't have to sort through the noise of people telling me to talk to my doctor (I already have) or that I'm having an allergic reaction (I already know and so does my doctor) or giving medical advice. Also, I'm just plain tired, and I don't want to type it all out if it's not going to reach my target audience. But here is the beginning of the story, from two months ago. I haven't posted about my issues since then because they have been unending and complicated and multifaceted.

Hi guys,

About a year ago my dermatologist diagnosed me with Mast Cell Activation Syndrome (MCAS) and gave me antihistamines. I recently stumbled upon this subreddit and found that people had very similar symptoms as me: an itch due to an increase in heat or whenever I get embarrassed. The only thing is that I don’t get hives. Is there a difference between MCAS and CU? Will treatments offered here work for me? I appreciate the help.

u/recoveringidahoan posted a video a few days ago under this subreddit. (Thank you!) It explained the connections between Neck issues, mast cell activation, hypermobility, dysautonomia, chronic pain, autoimmune issues, histamine etc.

https://youtu.be/2mIzE2X9OJk

Now we may understand the issue, but the question remains: how to solve it?? What is your answer?

From the video I collected this info:

Choline & pentathene (educt of acetylcholine) in high doses is like giving mestinon

Betaine (provides choline, helps with mast cell activation syndrome, acidifies the gut)

What else can we do? Obviously having a good neck posture helps, but I know that since years and already do everything I can.

What about: ...? https://www.healthrising.org/blog/2019/05/21/jennifer-brea-chronic-fatigue-mecfs-recovering-story/

Sounds helpful, but which doctor would actually do that and which health insurance would cover that??

Looking forward to your solutions!!

EDIT: ALSO WATCH THIS SECOND VIDEO.

https://youtu.be/8wdVMvBfLCs

Hi everyone! A few weeks ago I posted an "edutainment" video here on the link between IC and mast cell activation syndrome (MCAS) and many people found it super helpful. I even had one woman message me and tell me that she had a huge flare that normally would have lasted her months and she calmed down within three days just by taking 2 Zyrtec a day and that brought tears to my eyes!

I made a video on everything you need to know about testing for MCAS in case this is something you want to pursue to see if mast cells may be driving some of your IC symptoms.

https://www.youtube.com/watch?v=lLyFcBFKjHs

Full disclosure: I talk about my merch in the beginning (this is the only way I make a teensy bit of money since I am disabled) so if you want to skip past that part you can go to 0:36.

There are time stamps in the video description box and along the bottom bar so you can skip ahead to each topic:

0:00 intro

2:45 tryptase (and formula)

6:46 heparin

8:27 chromogranin A

10:20 prostaglandins

12:44 urine test instructions!

16:05 histamine

16:38 do antihistamines affect tests?

20:14 leukotrienes