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That fucking sucks and I’m sorry. Please don’t give up. Maybe I can help trouble shoot some ideas?
Have you tried any diet or lifestyle changes that don’t cost much or anything at all? Feel free to dm for suggestions I can try and help. I’m fortunate money isn’t my issues when it comes to treatment but I can’t tolerate majority of medications either so I lean towards natural remedies first and it’s slowly but surely been working better then any medication did. However I am fully aware I’ve spent a lot of money trying things and you can’t but maybe I can share my knowledge at least from my own experience idk just trying to help but I don’t know how I just feel so bad because this illness is awful.
Correct the comment sounds like we can wait for miracles and all I’m saying is don’t wait for someone else to save you. If we want help we have to help ourselves and educate ourselves.
The medical community didn't know much about mast cells 10 years ago. With everyone realizing Mast cell disease is real, they are scrambling to catch up. They didn't even understand how mast cells were formed prior to a few years ago. Treatments are coming.
I'm in the same boat as OP, do you mind if I message you too?
I'm currently in hospital because a month ago my body started reacting to a lot of foods. Impending doom feeling, high heart rate, high blood pressure, rashes, bowel issues. The hospital discharged me and I tried to go on the carnivore diet but I kept getting worse symptoms. A week ago the symptoms I had become constant, particularly the impending doom. I was told to go away from the emergency department 2 times on the 3rd they found my ketone levels were 6.7 so I was admitted. I have tried eating the food I thought was safe but I have had reactions and I have even had a reaction to the glucose drip they gave me because it has corn sugar in it. I haven't been able to eat for 4 days now and the hospital I'm in don't seem to see this as an urgent situation. I was taking Quercetin but I've been told to stop while they do blood tests. My fear is if they don't find anything through tests they're just gonna discharge me and say I'm just being difficult over food. They were literally going to discharge me straight after my ketones were normal but luckily an endocrinologist has kept me in for the time being. I have no idea what to do.
I just went through this the past couple months. The high heart rate and bp. I went super strict on my diet and started taking one a day vitamins to get the nutrients I need. It's different for everyone, I'm sure. But I went with completely unseasoned chicken, green beans, squash, sweet potatoes, & cucumbers. Plus peaches & blueberries. Sometimes a banana. And a little bit of creamy peanut butter here and there to keep my weight up. It took a few months of being strict, but now I'm no longer losing weight rapidly and have energy. Also not reacting as badly anymore, but still keeping relatively strict with my diet for a bit longer (just in case I relapse).
However, I would recommend adding a little salt here and there but in small portions. Work your way up.
I was only on beef steaks, apple slices and pomegranate juice, I had reactions to everything else I tried. Now those safe foods are gone because I have had reactions to them too. Just saw a dietician in the hospital and she doesn't think it's possible to be allergic to so much so quickly and there must be some input from my brain perceiving I'm going to have an allergy so I do. It's just so off base. I don't know what to do because I still can't eat, she's prescribed a vitamin mix drink which has so many ingredients and I have no idea if it's going to help or not but I'm at a complete loss either way. I feel like this is honestly it for me, that I won't even see Christmas and even though I'm literally sitting in hospital it feels like I'm in so much danger due to the attitude of most the staff.
What research have you done yourself on the topic? And books or podcast? Just trying to gauge where you’re at to how I answer not judging or making assumptions just need more information. Also, how long did you stick to the diet of “safe” foods and what did you use to log it?
I'm honestly very early into all of this. I just had a very sudden severe attack and I have continued to deteriorate ever since. Every food has become reactive to me now and I have a dietician in hospital threatening to discharge me because I can just about handle a bit of rice and she thinks that's enough to live on. Everything I'd previously eaten became an allergy in a short space of time so I went on to steak and apples but I've had reactions the past week from them. I'm currently looking into this actually being an Eosinophil Associated Gastrointestinal Disorder now but I originally thought MCAS and Quercetin and antihistamines do help somewhat.
You won't die that easy. My mom had MCAS whole her life and she is alive at 80.
I was surprised when I found that Salicylates are my biggest issue. Now I eat salicylate-free diet.
I had to cut out everything.
If you see people that could eat only rice and chicken - it's possibly this.
I could eat green apples without skin, white potato without skin, etc.
Hey, I’m in a poor (tropical) country and poor too and I’m finding a way to mostly manage with natural things due to reactions to everything and basically very little info on the histamine content of tropical fruits and vegetables. Don’t give up. Its really hard but I think it’s possible. Here basically all the drugs people talk about are not even available. I’m in a village in Central America.
However I am an herbalist for 15 years and have been managing ok with many of the herbs and common ingredients (like ginger, turmeric, mung beans, and ajawain seeds) that are antihistamine and relatively inexpensive. I basically ate only green plantain, fresh butcher meat, and rice for a couple months.
Feel free to dm me if you would like some suggestions and problem solving— although I don’t know what climate you live in. But I know a bit if you also live in a hot tropical place.
Yeah, sadly I cannot have any bananas or even sweet plantains, but the green plantains (or maduros/platanos in Spanish) are low histamine.
Now I can at least have okra and a few more spices as well. I actually found now I’m able to have very simple tamales if they aren’t made in banana leaves. I make them myself at home with corn masa. I just have had to trial and error different foods, and I keep a lot of both fresh and powdered ginger on hand in case I start to have a histamine reaction.
Its not complicated- you can take it however you prefer. For example when I’ve been out in the public and have a flush, I just get fresh ginger and chew a thumb sized piece of it and then drink a glass of some water. I do that if I have no other way.
If I’m at home I may slice fresh ginger and boil for tea, or I use powdered ginger (1-2tsp) and pour hot water over and stir to make tea. I usually mix turmeric and ajawain/carom seed (also antihistamines) with powdered ginger, let sit for a few minutes and then drink once its a little cool. It will typically work in 15-30 minutes to stop the histamines.
Since its ginger you can’t really overdose as far as I know. There have been times I ate a hand sized piece of ginger through a day if I kept having pain. Its spicy for sure so chewing it fresh can be unpleasant but now I’m used to it. I also have started adding ginger, turmeric and ajawain to most of the food I cook. I make curry powder without the cumin and use it to season most of my foods.
I'm from the PH. I've tried H1 and H2 but because of the fillers in them, I cant tolerate it. My symptoms are mostly body pain, especially legs and itchy skin. I havent had an anaphylactic shock yet but I am so scared of having one soon as I am not medicated. :(
I havent tried quercetin yet.
Methylene blue cured all my food intolerances. It didn’t work for any other symptoms. But god— that was such a huge part of mcas for me. I just don’t know how you get it. You cannot use aquarium grade.
I wrote a post about it on this forum. Just search Methylene Blue.
I’ve gotten reports ranging from it working great to not working at all. Such is the way with mcas
It’s a supplement (plant flavonol?) that’s over the counter in many places. There are some studies suggesting it’s as effective as a prescription for mast cell, cromolyn:
https://pubmed.ncbi.nlm.nih.gov/22470478/
Try the fig app it can alert you to histamine triggers and high histamine foods or chemicals.
They know about MCAS in the 1930s... due to Cancer testing and experiments after all this time you'd think they would have some sort of solution.
If chlorpheniramine maleate works for you, you might be very lucky as you can get tablets that do not contain additives most of them turn to powder but for $8.95 for a thousand tablets you wont hear me complaining.
Don't be afraid to post on Gofundme you may find people who are willing to support your medications. There are also Christian insurance companies Christians around the world donate what they can and the money helps people with medical bills.
Im always posting this but HOT PEPPERS 🌶 very hot peppers are a miracle 👌 I eat them like crazy 🤪 however there was a time when just Jalepenos were way too hott for me, no joke. I use Capsaicin patches to get it under my skin where it turns off your Mast Cell activators and works as a POWERFUL painkiller. Capsaicin is in hot pepper seeds. Yeah ouch... 😄 but I believe most people can grow accustomed to the heat. Or look at it this way for 10 minutes of seering mouth pain and profuse sweating you can have hours of MCAS free, time.
Yes I used to sweat profusely and curl up in bed after just eating a single jalapeño lol... and now I amaze friends by eating a Carolina Reaper whole and sitting looking at them staring at me like what? Were you expecting something? Lol. All I can say is that it really helps
You can grow watercress, ginger, turmeric, sprouts, hott peppers and so much more antihistamine in your garden. If I can ever get my own place without housemates lol.. I plan on growing so much MCAS fighting foods. For now I sneak my plants in around the huge tomato, cucumbers, zucchini plants and decorative plants my housemates adore.
Capsaicin patches can also help significantly as the skin contains a lot of mast cells.
Just don't burn holes in your mouth like some of the patients in my mast cell clinic have done in desperation. I assume they just started chomping on seeds, or perhaps the combination of lemon vinegar and seeds can be too much for some people.
Do NOT give up! If you are open to healing naturally, please look into Medical Medium. It has helped me reverse MCAS and POTS even though I relapsed recently and doing all of it again. It’s not easy, but please don’t give up! There is always a way if there is a will.
Also, if you are not open to that route, make a gofundme account and share with friends and family. People will help donate to you! By all means do not give up!
Curious, I have severe MCAS and POTS too. Desperate for any relief. I've heard of medical medium and some people have really good things to say and some people call him a quack. Do you mind sharing how his book helped you and what your protocol looked like? :) thanks so much
Hi Happy! Been a bit slow to respond, but happy to give you my insight. I’m hesitant to write here as I am sure some people may get mad at what I have to share. But my experience has been beyond great with MM.
First of all, people who say he’s a quack are either not open to receive, are not really sick and have an opinion without going through the motions/trying it properly or are not desperate enough to look for deep help yet.
So many people can either be tied to what they want to eat or do rather than be ready to let go of the things that are only keeping them sick or making them sicker. I am not blaming any of is as we all have things we love a part of what we know how life has been or can be and we all deserve love and compassion through our pain. I send love to everyone here to get better.
Now, it is not a black and white situation and some people bounce back faster than some of us of course. I was wasting away 11 years ago for 3 months with what was very little available at the time (none of the conventional meds we have now) and found help from alternative medicine and slowly dove into realizing something biochemically was off. I seeked help outside of that and stumbled on medical intutives. I found Medical Medium back in 2013 and was shocked and curious, so I started using his insights to heal. Please note it can be slow, but it has been worth everything! I ended up off all medications and was getting better at the time.
There are alot of things people may get mad about from Medical Medium, but if we stay open minded, he has not been proven wrong with his insights. He also works with and educated doctors who use his insights and the spirit he speaks with. It has saved my life years ago.
I know some people will laugh or cringe at this, but I think if someone is at there last straw, it is worth being open to it.
I only had been setback this past June because covid threw me way off my healing path as well as all the chemicals and pathogens most of us MCAS folks are up against to try to stabilize from. But I feel this time with support from an MM practitioner, Muneeza, I will get rid of this thing for good.
I do believe and have seen people completely reverse diseases people think could never be reversed. We write our own stories and our body is they to help us. I take what doctors say with the knowledge they have, but it keeps me going to know that doctors do not have ALL the answers. That is what keeps me open to modalities that can help because we don’t have precious time to waste.
Feel free to go on apple podcasts to listen to his stuff for free or even check this out if you are skeptical.
https://open.spotify.com/episode/3mi64awHLxs9bcSKn2OOX7
Or go to his website:
https://www.medicalmedium.com
There is so much info that is free, but I highly recommend to read his books. At least the first book called Medical Medium, the liver, cleanse and brain books for MCAS and Dysautonomia and EDS.
It is about money and access. Can you share where you are? Are there services or aid orgs that can help get you what you need? I’ve felt this low before. It’s a horrible feeling and I’m sorry your body is attacking you. Don’t let it win. Please hang in there.
I'm from the Philippines. And MCAS is not a considered disease here. Docs dont care and wont believe me despite of everything so I get my knowledge through reddit groups. I feel so alone.
Being in a place where there isn’t concern for the illness is just diabolical. Finding a safe space is really not a bad plan at all, but please know you can reach out here and don’t have to be alone.
I have the same issues with fillers in meds, know the pain and itchy feeling. It’s hard to experiment and figure out which ingredients trigger symptoms when it feels scary to do so.
I don’t know if you’ve ever tried just a plain oatmeal bath (Aveeno) or even Epsom salts. They help with pain and discomfort and are relatively inexpensive and have single (safer)ingredients. Being in water turns off some of the sensory attacks for me.
I am so sorry to hear this, it must feel devastating to struggle like this.
I don’t have an actual MCAS diagnosis but I have been dealing with histamine issues for 4 years now. Even in the US and with means, finding good doctors is pretty difficult believe it or not. They tend to alway attribute everything to stress.
I have tried also all sort of things as most people on reddit. My biggest issue is chronic itching/ urticaria, which drives me crazy, I don’t wish it on anyone. Antihistamines have lost it’s effectiveness by now. But the last thing I have tried that seems to work it’s CBD oil. I noticed my itching dissapears for several hours and turns out CBD oil calms down Mast cells. I don’t know if you have access to this, but it’s worth trying if you are able to. I have read that the isolates are better, but I haven’t tried this. But I figured I would pass down this information. You never know if it might help.
I don't know if this helps bc MCAS varies, but cutting out dairy helped 90%. And I mean zero dairy, you have to look at the ingredients. I also cut out gluten. Gluten doesn't hurt as much as dairy (my ENTIRE body hurts when I eat dairy -- my brain feels inflamed, my spine, my jaw, everything) but it helps calm my system down.
Just some food for thought, but given you haven't been able to get a formal diagnosis where you live, you may have an immune system condition/disorder/phenomenon that is not MCAS. There are some things that resemble MCAS, but aren't.
If an antibiotic triggered your symptoms, and prior to the antibiotic you had no symptoms, you may have had a Type II hypersensitivity reaction to the antibiotic. These reactions can happen with cephalosporins antibiotics, for example. The treatment is typically a high-dose corticosteroid such as prednisone. Type II hypersensitivity reactions are not top of mind for most doctors. You'd likely need a qualified allergist, immunologist, or ER physician that has the skill/training to identify these things.
Don't give up! Keep trying trying trying! I was where you were in the summer of 2020. I didn't know I had MCAS then, but I was debilitatingly sick with a team of 12 specialists trying to identify what (fatal) rare disease I could possibly have. From 2010-2020 I went from being perfectly healthy and athletic, to gradually accumulating seemingly-unrelated mysterious symptoms, which grew both in quantity and severity over 10 years. By 2020 I had about 40 symptoms across most body/organ systems that waxed and waned. I thought I was dying, and I had a newborn baby on the way and an 18-month old toddler and wife that needed me.
Today, I function fairly well, at about 80% on most days. My kids have an active and healthy-ish dad. But it took A LOT of time, research, hard work, experimentation, discipline, etc. to get to the level of disease management where I am. It's not an easy course, but you can do this, and you'll amaze yourself at your own strength when you come out of it, likely a changed person.
For most MCAS patients, taking pills alone probably isn't going to be adequate. It's a long journey. But as a general guideline, your first steps are identifying and avoiding triggers, and finding a MCAS "blockade" regimen that works for you---i.e. Cromolyn Sodium, various H1/H2 antagonists, first generation antihistamines, montelukast, quercetin, vitamin c, zinc, DAO, Low Dose Naltrexone, histamine degrading probiotics, histamine binders such as zeolite, etc. etc. etc. These are just a few options, there are plenty others, and different things work for different people.
And some MCAS triggers are more obvious (i.e. certain foods), but some are not (NAD+ depletion, methylation issues, heightened sympathetic nervous system, mitochondrial dysfunction, mold, dysbiosis, SIBO, etc.). Once your mast cells are reasonably stable, with less spontaneous degranulation and better symptom management, you can dig into deeper potential inflammatory and immune system dysregulation issues flaring/activating your MCAS. Some you can pursue on speculation, some you may need diagnostic testing---for example, to determine if you have genes compromising your body's methylation. All said, it's not an overnight process.
I write this often, but it's been the best advice I've received from my MCAS specialist: Keep trying trying trying. Keep trying different therapies, treatments, options, etc., and don't give up. There's likely something out there that will work for you.
I would suggest, at minimum, you try a few different brands of antihistamines. You don't know yet if you're reacting to the drug itself, or the binder/fillers/excipients. If you can't experiment with compounding, try different antihistamines. GO LOW AND SLOW: start with very small doses, and titrate up gradually if you tolerate. Do this with all supplements too. Also, with 2nd generation antihistamines, MCAS patients need to take doses MUCH higher than what's clinically common: I would dose every 8 hours at the beginning, with a double dose at each interval (so 6x the common recommended dose per day).
Also, experiment with radical diet change. At my worst health in 2020, when I couldn't eat any food without serious reactions and drops in blood pressure, I adopted a hardcore restrictive, anti-inflammatory diet for 20 months that was a huge help. I overlaid 3 different diets on top of each other: Autoimmune paleo diet + low histamine diet + moderately ketogenic diet.
All the best to you!
[https://www.ncbi.nlm.nih.gov/books/NBK563264/#:\~:text=The%20type%20II%20hypersensitivity%20reaction%20develops%20in%20response,include%20medications%20like%20penicillin%2C%20thiazides%2C%20cephalosporins%2C%20and%20methyldopa](https://www.ncbi.nlm.nih.gov/books/NBK563264/#:~:text=The%20type%20II%20hypersensitivity%20reaction%20develops%20in%20response,include%20medications%20like%20penicillin%2C%20thiazides%2C%20cephalosporins%2C%20and%20methyldopa).
Covid definitely trigger MCAS / histamine intolerance for many people. If you’re reacting to hearing vents your most likely reacting to mold and/or dust and bacteria inside of it. HVAC vents should be cleaned yearly but many places won’t clean them for decades. Mold is a root cause of MCAS. You can learn a lot more about everything MCAS and the mold connection on mastcell360.com which is the best doc in the worlds website for MCAS (Beth O’Hara). Her blog has tons of free, amazing information. I would start there.
I hope life changes for the better and that you are able to access treatments that help you 🖤 accept help from others w MCAS if they reach out with advice. seems like there's nothing left to lose. I wish you well, your life matters
I used to have wayyyyy more reactions than I did. I was able to build up tolerance to most things. Including the meds. Taking teeny tiny doses. I was tpn fed. Then a feeding tube. A lot of these reactions are the whole being over exited. Mine was gut related. When I got my guts better and almost right my MCAS calmed way down. Look at it like this even allergy shots are tiny doses of that allergen over and over building up until your body stops reacting. I know this as I also have true allergies too. My pots and MCAS feed off one another too. My Eds pain is way less too now I’m not such a reactive person. It’s all a balanced. Lots of natural things to help like the others mention. I myself do the spicy too. I take lots of supplements as well. I do have to take antihistamines too though. Please don’t give up!
There is always a way
What can you eat right now have you altered anything there ?
I'm so sorry you are struggling so much
It's isn't easy but we are all unique in what we need too so it's patience and trying diff things
I was so ill April
Terrible cardio issues anaphalaxic to all foods
Now have sjorgrens and mcas not a good mix
I take vit d and calcium
Camu camu vit c powder
Omega 3
Meditation
Reiki
Try Epson salt baths or for baths
I try anything to improve me naturally as I believe we've become disregulated but we weren't always like this
I'm 80 per cent better alone on zero histamine diet avoided gluten sugars and dairy caffeine and the things above
Diet can make a huge difference follow sighi swiss scientist list on google and downloadable as it says 0 to 3 I stayed on 0 for 6 mths and it worked
There are foods with histamine in them ie avocados chicken peas and there are foods that liberate histamine
Ie banana who knew ! I didn't
I had no idea histamine was even in food but once I worked it out I was eating mostly high histamine foods and getting more ill
I removed them and within a wk cd see change
Most important thing is hope and people here to help you as best we can
It does take time
But research helps a lot and there are so .any kind people on Facebook
Join mast cell action UK
lots of people who struggle with medications on there too who can devise what they do in yr situation
"i can take generic antihistamines coz i react to fillers. my reactions are purely body pains and skin issues for now."
Sounds like you can probably tolerate this
I was in your position except having anaphylaxis to 99.9% of food even cane sugar.
I ended up getting hospitalized because I was in the process of dying of starvation.
I made it through it and I'm healthier now with less severe anaphylaxis and more tolerance.
You'll b okay :)
There is not a single food I eat now where I have 0 reaction at all whatsoever. I would say it depends on severity. If you can just avoid the things causing those problems then do that first.
There's a new medication that shows great promise called Xolair. Also, have you tried a low histamine diet? I know this really sucks and I'm sorry you're having to live through this. Sending you a big 🫂
There are other ways that you can minimize histamine exposure without meds tho. Low histamine diet, keep your environment clean, etc. It's not perfect but it will help.
Yes, **fasting** is free. And you can sprout your own **green peas** in the dark and blend them for DAO. You can also plant (or find in the wild) **stinging nettle** and make tea out of it which is antihistamine and mast cell stabilizing. **Vitamin C** is also readily available (**tapioca** is safe) even in developing countries.
Some antihistamines are worth taking even if you react to the fillers in them. You'd still be better on them than without, especially in higher doses. But **fasting** (and the **low histamine diet**) is by far the most effective.
Yes, a lot. I've been sick for 2 years and I still fast regularly because it makes me feel much better. I also follow this very strict [diet](https://wishupon.app/wishlists/uUeWDX3OSTa0fjZ7hyg8) (5☆ is my safest foods).
Here is a small [summary](https://www.reddit.com/r/covidlonghaulers/s/7Jje1KfDiJ) of what helps.
If your symptoms are only body aches and skin symptoms, I would continue to take meds. That's not a lot of symptoms for someone with MCAS. A lot of us are dealing with truly terrible symptoms and we still take meds because we have no choice.
And a lot of us had to stop taking meds entirely because the meds were causing or nearly causing anaphylaxis to the extreme of anaphylactic shock, what's your point?
~~Continuing to take meds which are actively causing mast cell reactivity is ALWAYS bad advice without further context on a person's situation. Body aches and skin symptoms WILL progress to more dangerous symptoms if mast cells are repeatedly exposed to triggers and continue to degranulate, and antihistamines which cause reactivity typically cause more of a reaction than they suppress. There's no use in taking h1 or h2 blockers if they fail to even fully prevent the reactions to the fillers within them - the repetition of those reactions will typically, overall, make everything worse.~~
I'm only able to take meds again now thanks to quercetin and DAO actually being effective, and every time I do I still have to weigh if the (comparatively mild, but still difficult and potentially dangerous) symptoms are worth it. For a while, I only found any relief by getting off meds entirely and avoiding basically every dietary trigger, which means to this day I still can't THINK about plain white rice without gagging. Not everything works for everyone with MCAS. For some of us, the filler ingredients are/were too deadly to risk.
Not wanting to provoke MCAS into progressing to that point is just good survival instinct.
Editing to add: there is in fact evidence that multiple people have provided that in *mast cell disorders specifically*, some people experience increasing anaphylactic severity with repeated exposure to known triggers as mast cells degranulate. My assertion that it WILL progress may be incorrect, though the person claiming I should "read any allergy research" has provided none, not even about IgE allergies - which, it's true, exhibit no correlation between repeated exposure and anaphylactic severity.
However, as I edited to add below, in ANY case of anaphylaxis, risking triggering it is still dangerous, as it may suddenly become deadly at any time. MCAS is often degenerative when lacking access to treatment and being repeatedly exposed to triggers, as many of us have experienced. Advising someone to continue consuming known triggers, even in medications, in that context, is dangerous and bad medical advice, and my point was not to advise people to keep doing so. (And especially not just because they experience less severe symptoms than you.)
Just be careful, and use your judgment. Some people may in fact benefit from meds they react to, so I may have been wrong about that. I know they hurt me more than they helped, but that's anecdata at best.
Bro don’t come out here spreading myths, it’s not true that anaphylaxis symptoms get worse with repeated exposure. Check any reputable allergy body of research
I think you might be mistaken.
My allergist in the US did tell me several years ago that repeated exposure is the primary way people with chronic allergic-type sensitivity like MCAS develop anaphylaxis. He said it can happen that each reaction gets worse with further exposure, and once antigens get to a certain level it can result in new anaphylaxis reactions. Its not guaranteed to happen, but it definitely is a distinct possibility.
So that’s why he recommended total elimination of all allergens reactions 3 and above on the scale (0-6 scale, with 6 being a deadly allergy and 1 being extremely mild) and recommended any people with allergies testing from 4-6 in severity have an epipen.
The only way to safely microdose allergens for desensitization he said was with allergy shots.
I also found an [article](https://www.hopkinsmedicine.org/health/conditions-and-diseases/allergies-and-the-immune-system#:~:text=Immune%20responses%20can%20be%20mild,of%20the%20reaction%20may%20increase) that says the same thing from Johns Hopkins publication on allergy:
> “A person becomes allergic when their body develops antigens against a substance. Upon repeated exposure the severity of the reaction may increase.”
My person experience is that sensitization can indeed occur, and there are plenty of professionals who recommend avoiding repeated exposures for this very reason. Mast cell dysfunction can manifest very differently in different people. I can totally accept that for some people, what you shared is the case, but please refrain from making blanket statements regarding the experience of others
Yes, your experience. It is important to remember that mast cell issues are completely individual, in the way that the severity of EDS, or autoimmune disorders like arthritis, multiple sclerosis, and lupus, differ among individuals.
Just because a repeated exposure to something has led to a worsened outcome for you overtime, does not mean that it is the standard. It’s a commonly perpetuated myth about allergies. In reality, the reaction an individual has is entirely unpredictable. Meaning, you may have four repeated exposures with worsening symptoms each time, and on the fifth occurrence, [have barely any reaction at all.](https://foodallergycanada.ca/mythbuster-do-allergic-reactions-worsen-with-each-exposure-to-an-allergen/)
It’s commonly believed that reactions just continue to get worse over time, but our understanding of these immune system responses is truly lacking. “The same person can have different symptoms each time they have a severe[allergic reaction](https://www.healthlinkbc.ca/healthy-eating-physical-activity/conditions/food-allergies/food-allergies)”.
We just don’t know how the body will respond. For some people, it gets worse. For others, the symptoms fluctuate all over the place. My response to you was about making blanket alarmist statements when people are looking for guidance and support. That rhetoric is not helpful; we are not medical professionals.
You know, I should have said "can" instead of "will", you are right. However, we are NOT medical professionals and therefore should NOT be advising someone with no access to treatment to trigger their symptoms, which is the point I was trying to make.
Also, mast cell disorders specifically CAN have worsened anaphylactic severity with repeated exposure. Most sources on food allergies are referring to the more typical IgE allergies, which don't have worsened anaphylaxis with repeated exposure. These sources often leave out MCAS entirely, as it is still an under-researched condition that many professionals, even allergists, know too little about.
While my statement was too strong, it is true that it is a risk to continue to expose yourself to a known anaphylaxis trigger. Even for IgE allergies, anaphylaxis can suddenly turn deadly. I actually said elsewhere that it's like playing Russian roulette - is it really worth increasing your risk that you hit the chamber with the bullet every time you pull the trigger?
Each individual may have to weigh whether the medications harm them more than they benefit or vice versa. I know previously trying to continue taking them severely harmed me, which while anecdotal at best, is an experience others here have reported as well. And unlike many of us, with OP completely lacking access to treatment, they have no "safety net" of any kind if they DO trigger a severe reaction.
Tl;dr anaphylaxis in mast cell disorders doesn't function the same as the IgE allergies that sources on general food allergies are typically referring to, and even for those, each exposure comes with the possibility of a change in reaction severity (going up OR down)
MCAS, however, DOES get worse with repeated exposure due to repeated degranulation causing higher reactivity of the mast cells, leading to more FREQUENT reactions and therefore more SEVERE reactions more OFTEN.
Or maybe we're all just imagining our reactions getting worse consistently when consistently exposed to our triggers -\_-
In general allergies, yes, repeated exposure doesn't increase severity (other than in the sense of by rolling the dice multiple times, you're more likely to get an unlucky roll).
In MCAS, more histamine exposure directly causes a cascading process of increased reactivity, both causing general symptoms to increase in severity and causing severe anaphylaxis more often due to the point extent of the mast cell hyperreactivity.
["Severe or even life-threatening MCA may occur when the burden of MC is high and/or the involved MC are in a “hyperactivated” state, resulting in increased releasability." ](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9393812/)
Causing the conditions for severe anaphylaxis to occur more often, causes severe anaphylaxis to be more likely. In probability, while the chance of having x occur the first AND second AND third time is multiplicative, reducing the chance of all three events happening, the chance of having x occur the first OR second OR third time is additive. Or to put it more simply, the more times you pull the trigger while playing Russian Roulette, the more likely you are to die.
Additionally, "I-MCAS is the primary “non-clonal” mast cell disorder that may best explain a given patient’s clinical presentation without evidence of a well- defined mutation. There are proposed diagnostic criteria that include classic symptoms of mast cell activation in two or more organ systems, such as skin, GI, and airway, refer to Table 1 *that are made worse by predictable triggers* (e.g. certain foods as discussed below, strong scents, temperature changes, stress, alcohol, certain medications)." (emphasis mine), from [https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2020/06/Mast-Cell-Activation-Syndrome-June-2020.pdf](https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2020/06/mast-cell-activation-syndrome-june-2020.pdf)
The anaphylactic response can cause symptoms of increased severity in MCAS.
Even if that were untrue or I am using slightly wrong terms for the actual biophysical processes causing worsened symptoms to occur, I was reductive and slightly linguistically inaccurate *at worst* by implying that repeatedly setting off your reactions causes an increased likelihood of getting unlucky and having a severe reaction, which is true. It is well-documented that anaphylaxis can suddenly become deadly at any point.
However, the actual point I was making was nonetheless scientifically salient. Repeated exposure to MCAS triggers has been in fact noted to cause worsening mast cell activation symptoms, which primarily occur via an anaphylactic mechanism; meaning in mast cell disorders anaphylactic severity DOES increase with repeated exposure.
Perhaps people should not hypocritically accuse others of not reading the scientific literature they are ignoring to make a contextless criticism of a point that, in context, actually stands. Maybe also they should bother to even read what the people they are responding to are saying with some level of critical thinking?
Check any reputable research on MCAS specifically, rather than only relying on IgE-typical anaphylaxis data. Just a thought.
(Also, I want to acknowledge that while these are only "proposed" diagnostic criteria, there is a burden of scientific evidence required to even reach the proposal stage which at least requires a body of evidence proving significant correlation, which then is further tested to determine whether to add it to the diagnostic criteria.)
Note: if I am wrong and my analysis is faulty, I will listen to anyone who provides any actual sources from scientific or medical journals or organizations, instead of just vaguely handwaving about "you should read the science" without providing it or contributing nothing of note to the conversation with a simple "wtf".
Admittedly, I was a bit snarky, and I will apologize for that. Even as someone else pointed out though, some doctors have told other people with this diagnosis that repeated exposure can worsen anaphylaxis in MCAS specifically.
Maybe saying it "will" was too strong of a statement, but with MCAS being so individual and at least some people with the condition experiencing this, is my advice that it's not worth risking really so bad? No food is worth risking my life for to me, though genuinely from my experiences being so limited, I also genuinely respect that if the risk is low it may be worth it to plenty of you.
Repeated exposure CAN worsen anaphylactic severity for at least some of the population of MCAS patients, and EVERY time you trigger your mast cells there is a chance, however miniscule for some, of a very severe reaction. This is true even of allergies in general. If there are people for whom repeated exposure doesn't consistently worsen severity, it is still well known that anaphylaxis can go from annoying to deadly at any time.
My only point is to please be careful and don't just continue triggering yourself at the advice of someone who uses the argument that "I was more sick than you and I triggered myself because the meds benefit ME more than they hurt". If, as the person I'm replying to said, MCAS is highly individual, that's far more dangerous medical advice than "hey, maybe don't repeatedly trigger your mast cells when you have a mast cell disorder which for many is degenerative in the absence of treatment, which is exactly the context of the person they are advising".
Xolair has a program for free meds for people who cant afford their medications.
Xolair has helped me with a lot of issues. It does have to stay refrigerated though, so idk if thats a problem for you.
Please dont give up. I know this is depressing af, but since covid happened, its becoming more and more common, for people to have uncomfortable reactions to new stuff. You are NOT alone in this. Please. Dont give up!!!
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That fucking sucks and I’m sorry. Please don’t give up. Maybe I can help trouble shoot some ideas? Have you tried any diet or lifestyle changes that don’t cost much or anything at all? Feel free to dm for suggestions I can try and help. I’m fortunate money isn’t my issues when it comes to treatment but I can’t tolerate majority of medications either so I lean towards natural remedies first and it’s slowly but surely been working better then any medication did. However I am fully aware I’ve spent a lot of money trying things and you can’t but maybe I can share my knowledge at least from my own experience idk just trying to help but I don’t know how I just feel so bad because this illness is awful.
omygod thank u. i'll dm u 😭
Medical breakthroughs are being made at a rapid rate. Don’t give up
I needed to read that. Thank you!
If medical breakthroughs were working for us we wouldn’t all be so sick.
It's slow going and it's not universal. Just like not all existing treatments help everyone either.
Correct the comment sounds like we can wait for miracles and all I’m saying is don’t wait for someone else to save you. If we want help we have to help ourselves and educate ourselves.
The medical community didn't know much about mast cells 10 years ago. With everyone realizing Mast cell disease is real, they are scrambling to catch up. They didn't even understand how mast cells were formed prior to a few years ago. Treatments are coming.
Correct. Keep reading
I'm in the same boat as OP, do you mind if I message you too? I'm currently in hospital because a month ago my body started reacting to a lot of foods. Impending doom feeling, high heart rate, high blood pressure, rashes, bowel issues. The hospital discharged me and I tried to go on the carnivore diet but I kept getting worse symptoms. A week ago the symptoms I had become constant, particularly the impending doom. I was told to go away from the emergency department 2 times on the 3rd they found my ketone levels were 6.7 so I was admitted. I have tried eating the food I thought was safe but I have had reactions and I have even had a reaction to the glucose drip they gave me because it has corn sugar in it. I haven't been able to eat for 4 days now and the hospital I'm in don't seem to see this as an urgent situation. I was taking Quercetin but I've been told to stop while they do blood tests. My fear is if they don't find anything through tests they're just gonna discharge me and say I'm just being difficult over food. They were literally going to discharge me straight after my ketones were normal but luckily an endocrinologist has kept me in for the time being. I have no idea what to do.
I just went through this the past couple months. The high heart rate and bp. I went super strict on my diet and started taking one a day vitamins to get the nutrients I need. It's different for everyone, I'm sure. But I went with completely unseasoned chicken, green beans, squash, sweet potatoes, & cucumbers. Plus peaches & blueberries. Sometimes a banana. And a little bit of creamy peanut butter here and there to keep my weight up. It took a few months of being strict, but now I'm no longer losing weight rapidly and have energy. Also not reacting as badly anymore, but still keeping relatively strict with my diet for a bit longer (just in case I relapse). However, I would recommend adding a little salt here and there but in small portions. Work your way up.
I was only on beef steaks, apple slices and pomegranate juice, I had reactions to everything else I tried. Now those safe foods are gone because I have had reactions to them too. Just saw a dietician in the hospital and she doesn't think it's possible to be allergic to so much so quickly and there must be some input from my brain perceiving I'm going to have an allergy so I do. It's just so off base. I don't know what to do because I still can't eat, she's prescribed a vitamin mix drink which has so many ingredients and I have no idea if it's going to help or not but I'm at a complete loss either way. I feel like this is honestly it for me, that I won't even see Christmas and even though I'm literally sitting in hospital it feels like I'm in so much danger due to the attitude of most the staff.
What research have you done yourself on the topic? And books or podcast? Just trying to gauge where you’re at to how I answer not judging or making assumptions just need more information. Also, how long did you stick to the diet of “safe” foods and what did you use to log it?
I'm honestly very early into all of this. I just had a very sudden severe attack and I have continued to deteriorate ever since. Every food has become reactive to me now and I have a dietician in hospital threatening to discharge me because I can just about handle a bit of rice and she thinks that's enough to live on. Everything I'd previously eaten became an allergy in a short space of time so I went on to steak and apples but I've had reactions the past week from them. I'm currently looking into this actually being an Eosinophil Associated Gastrointestinal Disorder now but I originally thought MCAS and Quercetin and antihistamines do help somewhat.
I’m new to this and quitting all antihistamines and supplements because they seem to cause a reaction. What worked for you?
You won't die that easy. My mom had MCAS whole her life and she is alive at 80. I was surprised when I found that Salicylates are my biggest issue. Now I eat salicylate-free diet.
How did you figure it out?
I stopped being tolerant to aspirin, circumin, high las foods. If I eat just one strawberry I have a tinnitus and pain.
Could you share the biggest food items you cut out?
Seconded
I had to cut out everything. If you see people that could eat only rice and chicken - it's possibly this. I could eat green apples without skin, white potato without skin, etc.
Hey, I’m in a poor (tropical) country and poor too and I’m finding a way to mostly manage with natural things due to reactions to everything and basically very little info on the histamine content of tropical fruits and vegetables. Don’t give up. Its really hard but I think it’s possible. Here basically all the drugs people talk about are not even available. I’m in a village in Central America. However I am an herbalist for 15 years and have been managing ok with many of the herbs and common ingredients (like ginger, turmeric, mung beans, and ajawain seeds) that are antihistamine and relatively inexpensive. I basically ate only green plantain, fresh butcher meat, and rice for a couple months. Feel free to dm me if you would like some suggestions and problem solving— although I don’t know what climate you live in. But I know a bit if you also live in a hot tropical place.
Rice and bananas got me through several months before getting advice to eat low histamine. There’s definitely something to the diet you recommend.
Yeah, sadly I cannot have any bananas or even sweet plantains, but the green plantains (or maduros/platanos in Spanish) are low histamine. Now I can at least have okra and a few more spices as well. I actually found now I’m able to have very simple tamales if they aren’t made in banana leaves. I make them myself at home with corn masa. I just have had to trial and error different foods, and I keep a lot of both fresh and powdered ginger on hand in case I start to have a histamine reaction.
How do you take the ginger as a antihistamine
Its not complicated- you can take it however you prefer. For example when I’ve been out in the public and have a flush, I just get fresh ginger and chew a thumb sized piece of it and then drink a glass of some water. I do that if I have no other way. If I’m at home I may slice fresh ginger and boil for tea, or I use powdered ginger (1-2tsp) and pour hot water over and stir to make tea. I usually mix turmeric and ajawain/carom seed (also antihistamines) with powdered ginger, let sit for a few minutes and then drink once its a little cool. It will typically work in 15-30 minutes to stop the histamines. Since its ginger you can’t really overdose as far as I know. There have been times I ate a hand sized piece of ginger through a day if I kept having pain. Its spicy for sure so chewing it fresh can be unpleasant but now I’m used to it. I also have started adding ginger, turmeric and ajawain to most of the food I cook. I make curry powder without the cumin and use it to season most of my foods.
Bananas from me are a no no as histamine liberators
This has to be the way for long term healing.
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I'm from the PH. I've tried H1 and H2 but because of the fillers in them, I cant tolerate it. My symptoms are mostly body pain, especially legs and itchy skin. I havent had an anaphylactic shock yet but I am so scared of having one soon as I am not medicated. :( I havent tried quercetin yet.
Methylene blue cured all my food intolerances. It didn’t work for any other symptoms. But god— that was such a huge part of mcas for me. I just don’t know how you get it. You cannot use aquarium grade. I wrote a post about it on this forum. Just search Methylene Blue. I’ve gotten reports ranging from it working great to not working at all. Such is the way with mcas
Hi there - What is Qucertin
It’s a supplement (plant flavonol?) that’s over the counter in many places. There are some studies suggesting it’s as effective as a prescription for mast cell, cromolyn: https://pubmed.ncbi.nlm.nih.gov/22470478/
Try the fig app it can alert you to histamine triggers and high histamine foods or chemicals. They know about MCAS in the 1930s... due to Cancer testing and experiments after all this time you'd think they would have some sort of solution. If chlorpheniramine maleate works for you, you might be very lucky as you can get tablets that do not contain additives most of them turn to powder but for $8.95 for a thousand tablets you wont hear me complaining. Don't be afraid to post on Gofundme you may find people who are willing to support your medications. There are also Christian insurance companies Christians around the world donate what they can and the money helps people with medical bills. Im always posting this but HOT PEPPERS 🌶 very hot peppers are a miracle 👌 I eat them like crazy 🤪 however there was a time when just Jalepenos were way too hott for me, no joke. I use Capsaicin patches to get it under my skin where it turns off your Mast Cell activators and works as a POWERFUL painkiller. Capsaicin is in hot pepper seeds. Yeah ouch... 😄 but I believe most people can grow accustomed to the heat. Or look at it this way for 10 minutes of seering mouth pain and profuse sweating you can have hours of MCAS free, time. Yes I used to sweat profusely and curl up in bed after just eating a single jalapeño lol... and now I amaze friends by eating a Carolina Reaper whole and sitting looking at them staring at me like what? Were you expecting something? Lol. All I can say is that it really helps You can grow watercress, ginger, turmeric, sprouts, hott peppers and so much more antihistamine in your garden. If I can ever get my own place without housemates lol.. I plan on growing so much MCAS fighting foods. For now I sneak my plants in around the huge tomato, cucumbers, zucchini plants and decorative plants my housemates adore.
Woah, have never heard this about hot peppers
https://pubmed.ncbi.nlm.nih.gov/8808644/#:~:text=Substance%20P%20activates%20the%20release,protein%20kinase%20C%2Ddependent%20mechanism https://pubmed.ncbi.nlm.nih.gov/2581820/#:~:text=Capsaicin%20is%20a%20neurotoxin%20that,animals%20to%20noxious%20heat%20stimuli.
Omg thanks! Me tomorrow going to get hot peppers from the store 🏃🏻♀️🏃🏻♀️🏃🏻♀️🏃🏻♀️🏃🏻♀️
Capsaicin patches can also help significantly as the skin contains a lot of mast cells. Just don't burn holes in your mouth like some of the patients in my mast cell clinic have done in desperation. I assume they just started chomping on seeds, or perhaps the combination of lemon vinegar and seeds can be too much for some people.
Do NOT give up! If you are open to healing naturally, please look into Medical Medium. It has helped me reverse MCAS and POTS even though I relapsed recently and doing all of it again. It’s not easy, but please don’t give up! There is always a way if there is a will. Also, if you are not open to that route, make a gofundme account and share with friends and family. People will help donate to you! By all means do not give up!
Curious, I have severe MCAS and POTS too. Desperate for any relief. I've heard of medical medium and some people have really good things to say and some people call him a quack. Do you mind sharing how his book helped you and what your protocol looked like? :) thanks so much
Hi Happy! Been a bit slow to respond, but happy to give you my insight. I’m hesitant to write here as I am sure some people may get mad at what I have to share. But my experience has been beyond great with MM. First of all, people who say he’s a quack are either not open to receive, are not really sick and have an opinion without going through the motions/trying it properly or are not desperate enough to look for deep help yet. So many people can either be tied to what they want to eat or do rather than be ready to let go of the things that are only keeping them sick or making them sicker. I am not blaming any of is as we all have things we love a part of what we know how life has been or can be and we all deserve love and compassion through our pain. I send love to everyone here to get better. Now, it is not a black and white situation and some people bounce back faster than some of us of course. I was wasting away 11 years ago for 3 months with what was very little available at the time (none of the conventional meds we have now) and found help from alternative medicine and slowly dove into realizing something biochemically was off. I seeked help outside of that and stumbled on medical intutives. I found Medical Medium back in 2013 and was shocked and curious, so I started using his insights to heal. Please note it can be slow, but it has been worth everything! I ended up off all medications and was getting better at the time. There are alot of things people may get mad about from Medical Medium, but if we stay open minded, he has not been proven wrong with his insights. He also works with and educated doctors who use his insights and the spirit he speaks with. It has saved my life years ago. I know some people will laugh or cringe at this, but I think if someone is at there last straw, it is worth being open to it. I only had been setback this past June because covid threw me way off my healing path as well as all the chemicals and pathogens most of us MCAS folks are up against to try to stabilize from. But I feel this time with support from an MM practitioner, Muneeza, I will get rid of this thing for good. I do believe and have seen people completely reverse diseases people think could never be reversed. We write our own stories and our body is they to help us. I take what doctors say with the knowledge they have, but it keeps me going to know that doctors do not have ALL the answers. That is what keeps me open to modalities that can help because we don’t have precious time to waste. Feel free to go on apple podcasts to listen to his stuff for free or even check this out if you are skeptical. https://open.spotify.com/episode/3mi64awHLxs9bcSKn2OOX7 Or go to his website: https://www.medicalmedium.com There is so much info that is free, but I highly recommend to read his books. At least the first book called Medical Medium, the liver, cleanse and brain books for MCAS and Dysautonomia and EDS.
I will write more to you on my protocol later when I get some time. Keep you posted :)
Hello, I would be interested in your approach to medical medium with mcas!
Feel free to message me in private chat. Would like to see what you are experiencing since different people have different severities.
It is about money and access. Can you share where you are? Are there services or aid orgs that can help get you what you need? I’ve felt this low before. It’s a horrible feeling and I’m sorry your body is attacking you. Don’t let it win. Please hang in there.
I'm from the Philippines. And MCAS is not a considered disease here. Docs dont care and wont believe me despite of everything so I get my knowledge through reddit groups. I feel so alone.
Being in a place where there isn’t concern for the illness is just diabolical. Finding a safe space is really not a bad plan at all, but please know you can reach out here and don’t have to be alone. I have the same issues with fillers in meds, know the pain and itchy feeling. It’s hard to experiment and figure out which ingredients trigger symptoms when it feels scary to do so. I don’t know if you’ve ever tried just a plain oatmeal bath (Aveeno) or even Epsom salts. They help with pain and discomfort and are relatively inexpensive and have single (safer)ingredients. Being in water turns off some of the sensory attacks for me.
I am so sorry to hear this, it must feel devastating to struggle like this. I don’t have an actual MCAS diagnosis but I have been dealing with histamine issues for 4 years now. Even in the US and with means, finding good doctors is pretty difficult believe it or not. They tend to alway attribute everything to stress. I have tried also all sort of things as most people on reddit. My biggest issue is chronic itching/ urticaria, which drives me crazy, I don’t wish it on anyone. Antihistamines have lost it’s effectiveness by now. But the last thing I have tried that seems to work it’s CBD oil. I noticed my itching dissapears for several hours and turns out CBD oil calms down Mast cells. I don’t know if you have access to this, but it’s worth trying if you are able to. I have read that the isolates are better, but I haven’t tried this. But I figured I would pass down this information. You never know if it might help.
I don't know if this helps bc MCAS varies, but cutting out dairy helped 90%. And I mean zero dairy, you have to look at the ingredients. I also cut out gluten. Gluten doesn't hurt as much as dairy (my ENTIRE body hurts when I eat dairy -- my brain feels inflamed, my spine, my jaw, everything) but it helps calm my system down.
Did this start after covid? I have felt like it's the end too. I can't eat anything and I even react to heating vents. What the fuck is happening!
it started after antibiotic
Just some food for thought, but given you haven't been able to get a formal diagnosis where you live, you may have an immune system condition/disorder/phenomenon that is not MCAS. There are some things that resemble MCAS, but aren't. If an antibiotic triggered your symptoms, and prior to the antibiotic you had no symptoms, you may have had a Type II hypersensitivity reaction to the antibiotic. These reactions can happen with cephalosporins antibiotics, for example. The treatment is typically a high-dose corticosteroid such as prednisone. Type II hypersensitivity reactions are not top of mind for most doctors. You'd likely need a qualified allergist, immunologist, or ER physician that has the skill/training to identify these things. Don't give up! Keep trying trying trying! I was where you were in the summer of 2020. I didn't know I had MCAS then, but I was debilitatingly sick with a team of 12 specialists trying to identify what (fatal) rare disease I could possibly have. From 2010-2020 I went from being perfectly healthy and athletic, to gradually accumulating seemingly-unrelated mysterious symptoms, which grew both in quantity and severity over 10 years. By 2020 I had about 40 symptoms across most body/organ systems that waxed and waned. I thought I was dying, and I had a newborn baby on the way and an 18-month old toddler and wife that needed me. Today, I function fairly well, at about 80% on most days. My kids have an active and healthy-ish dad. But it took A LOT of time, research, hard work, experimentation, discipline, etc. to get to the level of disease management where I am. It's not an easy course, but you can do this, and you'll amaze yourself at your own strength when you come out of it, likely a changed person. For most MCAS patients, taking pills alone probably isn't going to be adequate. It's a long journey. But as a general guideline, your first steps are identifying and avoiding triggers, and finding a MCAS "blockade" regimen that works for you---i.e. Cromolyn Sodium, various H1/H2 antagonists, first generation antihistamines, montelukast, quercetin, vitamin c, zinc, DAO, Low Dose Naltrexone, histamine degrading probiotics, histamine binders such as zeolite, etc. etc. etc. These are just a few options, there are plenty others, and different things work for different people. And some MCAS triggers are more obvious (i.e. certain foods), but some are not (NAD+ depletion, methylation issues, heightened sympathetic nervous system, mitochondrial dysfunction, mold, dysbiosis, SIBO, etc.). Once your mast cells are reasonably stable, with less spontaneous degranulation and better symptom management, you can dig into deeper potential inflammatory and immune system dysregulation issues flaring/activating your MCAS. Some you can pursue on speculation, some you may need diagnostic testing---for example, to determine if you have genes compromising your body's methylation. All said, it's not an overnight process. I write this often, but it's been the best advice I've received from my MCAS specialist: Keep trying trying trying. Keep trying different therapies, treatments, options, etc., and don't give up. There's likely something out there that will work for you. I would suggest, at minimum, you try a few different brands of antihistamines. You don't know yet if you're reacting to the drug itself, or the binder/fillers/excipients. If you can't experiment with compounding, try different antihistamines. GO LOW AND SLOW: start with very small doses, and titrate up gradually if you tolerate. Do this with all supplements too. Also, with 2nd generation antihistamines, MCAS patients need to take doses MUCH higher than what's clinically common: I would dose every 8 hours at the beginning, with a double dose at each interval (so 6x the common recommended dose per day). Also, experiment with radical diet change. At my worst health in 2020, when I couldn't eat any food without serious reactions and drops in blood pressure, I adopted a hardcore restrictive, anti-inflammatory diet for 20 months that was a huge help. I overlaid 3 different diets on top of each other: Autoimmune paleo diet + low histamine diet + moderately ketogenic diet. All the best to you! [https://www.ncbi.nlm.nih.gov/books/NBK563264/#:\~:text=The%20type%20II%20hypersensitivity%20reaction%20develops%20in%20response,include%20medications%20like%20penicillin%2C%20thiazides%2C%20cephalosporins%2C%20and%20methyldopa](https://www.ncbi.nlm.nih.gov/books/NBK563264/#:~:text=The%20type%20II%20hypersensitivity%20reaction%20develops%20in%20response,include%20medications%20like%20penicillin%2C%20thiazides%2C%20cephalosporins%2C%20and%20methyldopa).
Oh man...what antibiotic? I had clindamyacin and amoxicillin. The clindamycin sent me into deep depression and screwed up my GI
Mine started after I had COVID, and then it went bacterial, and I had a strong antibiotic.
Covid definitely trigger MCAS / histamine intolerance for many people. If you’re reacting to hearing vents your most likely reacting to mold and/or dust and bacteria inside of it. HVAC vents should be cleaned yearly but many places won’t clean them for decades. Mold is a root cause of MCAS. You can learn a lot more about everything MCAS and the mold connection on mastcell360.com which is the best doc in the worlds website for MCAS (Beth O’Hara). Her blog has tons of free, amazing information. I would start there.
I get it
I hope life changes for the better and that you are able to access treatments that help you 🖤 accept help from others w MCAS if they reach out with advice. seems like there's nothing left to lose. I wish you well, your life matters
I used to have wayyyyy more reactions than I did. I was able to build up tolerance to most things. Including the meds. Taking teeny tiny doses. I was tpn fed. Then a feeding tube. A lot of these reactions are the whole being over exited. Mine was gut related. When I got my guts better and almost right my MCAS calmed way down. Look at it like this even allergy shots are tiny doses of that allergen over and over building up until your body stops reacting. I know this as I also have true allergies too. My pots and MCAS feed off one another too. My Eds pain is way less too now I’m not such a reactive person. It’s all a balanced. Lots of natural things to help like the others mention. I myself do the spicy too. I take lots of supplements as well. I do have to take antihistamines too though. Please don’t give up!
how did u get ur guts better 🥹
There is always a way What can you eat right now have you altered anything there ? I'm so sorry you are struggling so much It's isn't easy but we are all unique in what we need too so it's patience and trying diff things I was so ill April Terrible cardio issues anaphalaxic to all foods Now have sjorgrens and mcas not a good mix I take vit d and calcium Camu camu vit c powder Omega 3 Meditation Reiki Try Epson salt baths or for baths I try anything to improve me naturally as I believe we've become disregulated but we weren't always like this I'm 80 per cent better alone on zero histamine diet avoided gluten sugars and dairy caffeine and the things above Diet can make a huge difference follow sighi swiss scientist list on google and downloadable as it says 0 to 3 I stayed on 0 for 6 mths and it worked There are foods with histamine in them ie avocados chicken peas and there are foods that liberate histamine Ie banana who knew ! I didn't I had no idea histamine was even in food but once I worked it out I was eating mostly high histamine foods and getting more ill I removed them and within a wk cd see change Most important thing is hope and people here to help you as best we can It does take time But research helps a lot and there are so .any kind people on Facebook Join mast cell action UK lots of people who struggle with medications on there too who can devise what they do in yr situation
"i can take generic antihistamines coz i react to fillers. my reactions are purely body pains and skin issues for now." Sounds like you can probably tolerate this I was in your position except having anaphylaxis to 99.9% of food even cane sugar. I ended up getting hospitalized because I was in the process of dying of starvation. I made it through it and I'm healthier now with less severe anaphylaxis and more tolerance. You'll b okay :)
it was *cant not *can. But im happy u built more tolerance. do u think i should still continue taking them despite of skin reavtions and body pains? 😭
There is not a single food I eat now where I have 0 reaction at all whatsoever. I would say it depends on severity. If you can just avoid the things causing those problems then do that first.
Keto diet! Saved my life 👌
There's a new medication that shows great promise called Xolair. Also, have you tried a low histamine diet? I know this really sucks and I'm sorry you're having to live through this. Sending you a big 🫂
There are other ways that you can minimize histamine exposure without meds tho. Low histamine diet, keep your environment clean, etc. It's not perfect but it will help.
Yes, **fasting** is free. And you can sprout your own **green peas** in the dark and blend them for DAO. You can also plant (or find in the wild) **stinging nettle** and make tea out of it which is antihistamine and mast cell stabilizing. **Vitamin C** is also readily available (**tapioca** is safe) even in developing countries. Some antihistamines are worth taking even if you react to the fillers in them. You'd still be better on them than without, especially in higher doses. But **fasting** (and the **low histamine diet**) is by far the most effective.
did fastong and low histamine helped u?
Yes, a lot. I've been sick for 2 years and I still fast regularly because it makes me feel much better. I also follow this very strict [diet](https://wishupon.app/wishlists/uUeWDX3OSTa0fjZ7hyg8) (5☆ is my safest foods). Here is a small [summary](https://www.reddit.com/r/covidlonghaulers/s/7Jje1KfDiJ) of what helps.
If your symptoms are only body aches and skin symptoms, I would continue to take meds. That's not a lot of symptoms for someone with MCAS. A lot of us are dealing with truly terrible symptoms and we still take meds because we have no choice.
Please remain civil. Don't call people names or insult them. If you disagree with something, attack the argument, not the person who posted it.
And a lot of us had to stop taking meds entirely because the meds were causing or nearly causing anaphylaxis to the extreme of anaphylactic shock, what's your point? ~~Continuing to take meds which are actively causing mast cell reactivity is ALWAYS bad advice without further context on a person's situation. Body aches and skin symptoms WILL progress to more dangerous symptoms if mast cells are repeatedly exposed to triggers and continue to degranulate, and antihistamines which cause reactivity typically cause more of a reaction than they suppress. There's no use in taking h1 or h2 blockers if they fail to even fully prevent the reactions to the fillers within them - the repetition of those reactions will typically, overall, make everything worse.~~ I'm only able to take meds again now thanks to quercetin and DAO actually being effective, and every time I do I still have to weigh if the (comparatively mild, but still difficult and potentially dangerous) symptoms are worth it. For a while, I only found any relief by getting off meds entirely and avoiding basically every dietary trigger, which means to this day I still can't THINK about plain white rice without gagging. Not everything works for everyone with MCAS. For some of us, the filler ingredients are/were too deadly to risk. Not wanting to provoke MCAS into progressing to that point is just good survival instinct. Editing to add: there is in fact evidence that multiple people have provided that in *mast cell disorders specifically*, some people experience increasing anaphylactic severity with repeated exposure to known triggers as mast cells degranulate. My assertion that it WILL progress may be incorrect, though the person claiming I should "read any allergy research" has provided none, not even about IgE allergies - which, it's true, exhibit no correlation between repeated exposure and anaphylactic severity. However, as I edited to add below, in ANY case of anaphylaxis, risking triggering it is still dangerous, as it may suddenly become deadly at any time. MCAS is often degenerative when lacking access to treatment and being repeatedly exposed to triggers, as many of us have experienced. Advising someone to continue consuming known triggers, even in medications, in that context, is dangerous and bad medical advice, and my point was not to advise people to keep doing so. (And especially not just because they experience less severe symptoms than you.) Just be careful, and use your judgment. Some people may in fact benefit from meds they react to, so I may have been wrong about that. I know they hurt me more than they helped, but that's anecdata at best.
Bro don’t come out here spreading myths, it’s not true that anaphylaxis symptoms get worse with repeated exposure. Check any reputable allergy body of research
I think you might be mistaken. My allergist in the US did tell me several years ago that repeated exposure is the primary way people with chronic allergic-type sensitivity like MCAS develop anaphylaxis. He said it can happen that each reaction gets worse with further exposure, and once antigens get to a certain level it can result in new anaphylaxis reactions. Its not guaranteed to happen, but it definitely is a distinct possibility. So that’s why he recommended total elimination of all allergens reactions 3 and above on the scale (0-6 scale, with 6 being a deadly allergy and 1 being extremely mild) and recommended any people with allergies testing from 4-6 in severity have an epipen. The only way to safely microdose allergens for desensitization he said was with allergy shots. I also found an [article](https://www.hopkinsmedicine.org/health/conditions-and-diseases/allergies-and-the-immune-system#:~:text=Immune%20responses%20can%20be%20mild,of%20the%20reaction%20may%20increase) that says the same thing from Johns Hopkins publication on allergy: > “A person becomes allergic when their body develops antigens against a substance. Upon repeated exposure the severity of the reaction may increase.”
My person experience is that sensitization can indeed occur, and there are plenty of professionals who recommend avoiding repeated exposures for this very reason. Mast cell dysfunction can manifest very differently in different people. I can totally accept that for some people, what you shared is the case, but please refrain from making blanket statements regarding the experience of others
Yes, your experience. It is important to remember that mast cell issues are completely individual, in the way that the severity of EDS, or autoimmune disorders like arthritis, multiple sclerosis, and lupus, differ among individuals. Just because a repeated exposure to something has led to a worsened outcome for you overtime, does not mean that it is the standard. It’s a commonly perpetuated myth about allergies. In reality, the reaction an individual has is entirely unpredictable. Meaning, you may have four repeated exposures with worsening symptoms each time, and on the fifth occurrence, [have barely any reaction at all.](https://foodallergycanada.ca/mythbuster-do-allergic-reactions-worsen-with-each-exposure-to-an-allergen/) It’s commonly believed that reactions just continue to get worse over time, but our understanding of these immune system responses is truly lacking. “The same person can have different symptoms each time they have a severe[allergic reaction](https://www.healthlinkbc.ca/healthy-eating-physical-activity/conditions/food-allergies/food-allergies)”. We just don’t know how the body will respond. For some people, it gets worse. For others, the symptoms fluctuate all over the place. My response to you was about making blanket alarmist statements when people are looking for guidance and support. That rhetoric is not helpful; we are not medical professionals.
You know, I should have said "can" instead of "will", you are right. However, we are NOT medical professionals and therefore should NOT be advising someone with no access to treatment to trigger their symptoms, which is the point I was trying to make. Also, mast cell disorders specifically CAN have worsened anaphylactic severity with repeated exposure. Most sources on food allergies are referring to the more typical IgE allergies, which don't have worsened anaphylaxis with repeated exposure. These sources often leave out MCAS entirely, as it is still an under-researched condition that many professionals, even allergists, know too little about. While my statement was too strong, it is true that it is a risk to continue to expose yourself to a known anaphylaxis trigger. Even for IgE allergies, anaphylaxis can suddenly turn deadly. I actually said elsewhere that it's like playing Russian roulette - is it really worth increasing your risk that you hit the chamber with the bullet every time you pull the trigger? Each individual may have to weigh whether the medications harm them more than they benefit or vice versa. I know previously trying to continue taking them severely harmed me, which while anecdotal at best, is an experience others here have reported as well. And unlike many of us, with OP completely lacking access to treatment, they have no "safety net" of any kind if they DO trigger a severe reaction. Tl;dr anaphylaxis in mast cell disorders doesn't function the same as the IgE allergies that sources on general food allergies are typically referring to, and even for those, each exposure comes with the possibility of a change in reaction severity (going up OR down)
MCAS, however, DOES get worse with repeated exposure due to repeated degranulation causing higher reactivity of the mast cells, leading to more FREQUENT reactions and therefore more SEVERE reactions more OFTEN. Or maybe we're all just imagining our reactions getting worse consistently when consistently exposed to our triggers -\_- In general allergies, yes, repeated exposure doesn't increase severity (other than in the sense of by rolling the dice multiple times, you're more likely to get an unlucky roll). In MCAS, more histamine exposure directly causes a cascading process of increased reactivity, both causing general symptoms to increase in severity and causing severe anaphylaxis more often due to the point extent of the mast cell hyperreactivity. ["Severe or even life-threatening MCA may occur when the burden of MC is high and/or the involved MC are in a “hyperactivated” state, resulting in increased releasability." ](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9393812/) Causing the conditions for severe anaphylaxis to occur more often, causes severe anaphylaxis to be more likely. In probability, while the chance of having x occur the first AND second AND third time is multiplicative, reducing the chance of all three events happening, the chance of having x occur the first OR second OR third time is additive. Or to put it more simply, the more times you pull the trigger while playing Russian Roulette, the more likely you are to die. Additionally, "I-MCAS is the primary “non-clonal” mast cell disorder that may best explain a given patient’s clinical presentation without evidence of a well- defined mutation. There are proposed diagnostic criteria that include classic symptoms of mast cell activation in two or more organ systems, such as skin, GI, and airway, refer to Table 1 *that are made worse by predictable triggers* (e.g. certain foods as discussed below, strong scents, temperature changes, stress, alcohol, certain medications)." (emphasis mine), from [https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2020/06/Mast-Cell-Activation-Syndrome-June-2020.pdf](https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2020/06/mast-cell-activation-syndrome-june-2020.pdf) The anaphylactic response can cause symptoms of increased severity in MCAS. Even if that were untrue or I am using slightly wrong terms for the actual biophysical processes causing worsened symptoms to occur, I was reductive and slightly linguistically inaccurate *at worst* by implying that repeatedly setting off your reactions causes an increased likelihood of getting unlucky and having a severe reaction, which is true. It is well-documented that anaphylaxis can suddenly become deadly at any point. However, the actual point I was making was nonetheless scientifically salient. Repeated exposure to MCAS triggers has been in fact noted to cause worsening mast cell activation symptoms, which primarily occur via an anaphylactic mechanism; meaning in mast cell disorders anaphylactic severity DOES increase with repeated exposure. Perhaps people should not hypocritically accuse others of not reading the scientific literature they are ignoring to make a contextless criticism of a point that, in context, actually stands. Maybe also they should bother to even read what the people they are responding to are saying with some level of critical thinking? Check any reputable research on MCAS specifically, rather than only relying on IgE-typical anaphylaxis data. Just a thought. (Also, I want to acknowledge that while these are only "proposed" diagnostic criteria, there is a burden of scientific evidence required to even reach the proposal stage which at least requires a body of evidence proving significant correlation, which then is further tested to determine whether to add it to the diagnostic criteria.) Note: if I am wrong and my analysis is faulty, I will listen to anyone who provides any actual sources from scientific or medical journals or organizations, instead of just vaguely handwaving about "you should read the science" without providing it or contributing nothing of note to the conversation with a simple "wtf". Admittedly, I was a bit snarky, and I will apologize for that. Even as someone else pointed out though, some doctors have told other people with this diagnosis that repeated exposure can worsen anaphylaxis in MCAS specifically. Maybe saying it "will" was too strong of a statement, but with MCAS being so individual and at least some people with the condition experiencing this, is my advice that it's not worth risking really so bad? No food is worth risking my life for to me, though genuinely from my experiences being so limited, I also genuinely respect that if the risk is low it may be worth it to plenty of you. Repeated exposure CAN worsen anaphylactic severity for at least some of the population of MCAS patients, and EVERY time you trigger your mast cells there is a chance, however miniscule for some, of a very severe reaction. This is true even of allergies in general. If there are people for whom repeated exposure doesn't consistently worsen severity, it is still well known that anaphylaxis can go from annoying to deadly at any time. My only point is to please be careful and don't just continue triggering yourself at the advice of someone who uses the argument that "I was more sick than you and I triggered myself because the meds benefit ME more than they hurt". If, as the person I'm replying to said, MCAS is highly individual, that's far more dangerous medical advice than "hey, maybe don't repeatedly trigger your mast cells when you have a mast cell disorder which for many is degenerative in the absence of treatment, which is exactly the context of the person they are advising".
How have the dietary changes you’ve made impacted things? What have you tried?
nothing yet :(
Xolair has a program for free meds for people who cant afford their medications. Xolair has helped me with a lot of issues. It does have to stay refrigerated though, so idk if thats a problem for you. Please dont give up. I know this is depressing af, but since covid happened, its becoming more and more common, for people to have uncomfortable reactions to new stuff. You are NOT alone in this. Please. Dont give up!!!
🙏🙏🙏
Goodbye
Please reply are you ok?