I have spent my whole life from childhood trying to get a doctor, any doctor to take me seriously concerning my symptoms, but I always was written off as a hypochondriac, drug seeking, having mental health issues and just being over weight. I turned 51 last year and now spend a lot time in a wheelchair. About 2 years ago I got sick of doctors telling me it’s in my head and started to research. Ends up I have have EDS. I was formerly diagnosed last year. Now the secondary diagnosis’s are coming in. I also have MCAS, POTS, osteoarthritis, osteoporosis, my discs are degenerating, I now also have scoliosis and the beginnings of Ankylosing Spondylitis. All I ever wanted from a doctor is to be taken seriously.
@@OnlyMe-uk6nh ah ok cause I hear of people and have read research who swear by it.. I guess as in all solutions it depends on the person. Liposomal, taken with other drugs, food etc. can make a difference too. Thanks
Beneficial overview. Based on experience and other people's testimony, probably 98% of all doctors have little to no (and I mean no, none) knowledge of this. As in they think patients are making up the symptoms and the term. So, it's nearly impossible for most people to get diagnosed at this point in time, (though it's improving slowly) patients are ignored and told to see...a shrink. So yes, videos raising awareness...help.
I’d have to say this is completely ignored. Since I’m not a doctor, I have no problem saying the drug companies are corrupting. Every one that is supposed to make us safe and better well almost. There’s a few who are willing to do something about it. The politician that puts these drug companies in their place and makes insurance available across-the-board is the politician that will hang around for a long time.. I mean we don’t wanna keep seeing owners of drug companies and their spouses lynched in their swimming pool do we?🤨
I’m going to my immunologist to get tested after being super messed up from fibromyalgia chronic fatigue syndrome and chronic migraines gastroparesis IBS and functional dyspepsia and more with no cause to be found. I researched online and said immunology Dr can test for it
Thank you for covering this!!! I’d love to hear what you do to treat this? I’m getting some tests done and if I have it I’m looking into what I can do to treat it. I’ve been on low histamine and low inflammation diet for years and lots of supplements, lifestyle changes so I can’t imagine what else I could do besides added a medication of someone kind and preferably homeopathic or injection 🤞
I have something. Every smell triggers me to drown in phlegm. And I do mean drown. Like ER ambulance stay in hospital for days on nebulizers and steroids. I can't even go inside people's houses. I need fresh air 24 7 It started as mold in my basement but after I got sick from that.. had no idea I had mold. New house. After that every smell did it to me. Even like basic smells of soap will choke me. And then the phlegm comes so bad I drown. And it only subsides when I go outside for hours. I even sleep outside now with a heater and a sleeping bag and tarp lol. I own a house and live in my yard 🤣 and even clean clean houses do it to me. Just takes longer. No dust no nothing. Still the indoor pollution puts me into an attack.
this is me…migraines POTS unexplained heart racing or palpitations , skin rashes , struggle w temp changes, pure exhaustion 24/7, IBS, dizziness on the daily, chronic sinus issues, joint pain starting in my 20s, extreme water retention, swollen lips eyes hands so on and so on no one knows why I’m so sick!!!! Wow I am blown away by this as I have an answer now and can bring this up to local doctor!
Get your thyroid checked by an endocrinologist as well. I have MCAS and I also had thyroid issues that were unrelated. If I had been diagnosed with MCAS, the thyroid issue would have been missed. Good luck on your journey. Been in your shoes. Took me 50 yrs to get a diagnosis and SOME relief.
The first person you watched on RUclips… there are many WAY more knowledgeable people on here describing actual things you can do. Start taking oil of oregano, bile acid, a DAO supplement before eating histamine
YOUGoodness! I am forwarding this video to my doctor who told me a low histamine diet was not a medical issue, and the doctor who wrote a cookbook was just selling BS! I am changing doctors, I do not have time or energy to EDUCATE the person controlling MY health! Honestly with a high school education, it is way above my pay grade to discern all the information on MCAS, hEDS, Food, Chemical and Environmental Allergies, difficulty with EMF, 5G, Fibromyalgia, and let’s not forget psychology issues OCD, ADHD, Depression and cPTSD! It is SO easy for doctors to just mark the CRAZY box, collect their fee and move down the 15 minute healthcare conveyer belt.
I got diagnosed with POTS back in september and ankylosing spondylitis in august I did a mast cell workup as well (still don’t have any word of what the results are for that) and I thought it was all a scam because after 2 years of fighting the drs for a diagnosis other than anxiety I got these two conditions that I never heard of just seemed off to me but here i am now wheelchair bound at 26 years old no income was hospitalized and put in a nursing home for almost a month and still going through hell and back because “not enough specialists know enough on how to treat it” I get pinpoint rashes, skin writing, sometimes hives and itching, rapid weight loss, fatigue, tachycardia, blood pressure spikes and drops, hypoglycemia, arthritis, weakness, digestion issues, intense pressure headaches that ive never felt in my life its nothing like a migrane or standard headache, body temperate doesnt regulate correctly, dry mouth eyes and nose as well as taste and smell issues, acne, easy brusing, and the list goes on and on but every blood test and mri or ct scan always comes back normal so they dont considerate it life threatening and send me home everytime
@@vipinackavil6733 AND, the doctors have no critical thinking skills. The diagnosis is run by lab results. If it doesn't show on the lab, you do not have it. I went thru a lot in April 2016. Finally got to a rheumatologist in Jan 2017. After all the tests were done, I was diagnosed with Sjogren's, because some of the novel antibodies on the test were elevated. After years of stupid MDs and PAs, I quit taking my hydroxychloroquine and stopped going. Whenever I went in there with symptoms, they thought I was crazy. It is called gaslighting. If the doctor doesn't know, then you have mental problems. Many neurologists that could not figure out what their patients were complaining of, so they are now neuron-psychiatrists. Medical system is getting worse and worse and worse. I am a retired nurse, so I will deal with the symptoms. It isn't worth the effort to be gaslighted when you are paying thru insurance to get it.
This is so helpful. I had chronic “utis” that strangely had no bacteria on testing. Thankfully I had a thorough urologist who discovered it was actually a problem with mast cell activation. The relief to finally have a cause for the pain was incredible.
Also, if you could please let me know how other specialists may get a hold of you . LikeThe Neuropsychologist, I I’m scheduled to see . As I would love nothing better than to get someone else on the same page so we can bring awareness as to the mental ramifications. thank you once more as I do believe you are heaven sent. 😇👌
Wow, you just summed up my daughter. She’s been diagnosed with POTS , JIA, Asthma, Eczema, Gerd , Dermographia, all kinds of digestive issues, has IBS symptoms (not diagnosed) and her dr told us mass cell issues, but not diagnosed MCAD. And possible EDS. Now she’s having trouble with her heart. Because her blood pressure goes so extremely high to extremely low. She is also having trouble with multiple utis , kidney issues. The list goes on . And she just turned 20. Unfortunately we no longer have health insurance. Nor can we afford to buy it outright on our own. So she just suffers . It’s hard as a Mom to feel so helpless . All I want to do is help my child. Especially with her being so sick . Life is hard sometimes.
Yes, that is a lot and I think it can be overwhelming when you have all those different diagnoses. Just remember that it is possible to improve your health and get better. I know this from working firsthand with patients. It is such an individualized process but my videos are aimed at helping you understand some of the fundamentals of this. Good luck to you guys.
I can sympathize with you. My daughter was 26 when she started with this. I try to be positive for her and I do feel there’s an answer but it’s hard when she gets so down. I pray the Rosary daily and that has helped me. And I just keep researching! Best of luck to y’all!
Quecertin woodworm soursop tulsi meringa tea gave me a new baseline Low histamine dieet next to omad no sugar and processed food. After three months i can eat more again. Lots of symptoms are gone.@@MM-qp4pd
the simplest thing a person can do is eat healthy. zero fast foods. OMD. Intermittent fasting. one can of sardines a day. no gmo foods. get out in the sunshine everyday and expose as much of your skin to the sun as possible w/o burning red. I wear layered clothe and sit in the 35 degree sunshine with zero wind. as the sun starts to cook me, I remover layer by layer, until I'm down to my gym shorts. no sunscreen. natural vitamin d is the superfood our bodies need. and start going barefoot. the natural connectivity with the earth is also a good thing. It has made my knees and back stronger while reducing inflammation.
These are all good healthy suggestions so thanks for contributing. One thing on the sardines… that may be one of the highest histamine containing foods so one should be cautious w that one although it is otherwise healthy to eat.
My mom had this. I did not know of it at the time. I feel I failed her. She died of a reverse fall down 12 steps. Pretty much instant death. Thanks for the video. She was digging at her skin it was so itchy. God damnit. This sucks.
@@swintegrative Thank you. I just was at a friends today. hes very sick and dont know why. Same symptoms. I told him about mast cell and he was like holy f, thats it. after he googled it. I got him some second gen antihistamines to try (clarion) and we'll see. Hoping that makes up for me not researching hard on mom. Id love to talk to a trauma surgeon about this so i can have some closure.
Not oxalates. It happens when I don’t drink enough water. It’s been happening for 45 years. Mast cells release histamine and antihistamines relieve the symptoms.
I've had issues since childhood and came to the conclusion that I must have hEDS, which I had a specialist confirm. Unfortunately she was just a research scientist and can't make formal diagnosis so the point was for my doctor just confirm it, but the refuse. I've had issues with random allergies comming and going, issues with asthma that can't be treated, cardiovascular and abdominal issues, basically everything mentioned in this video. I'm going to mention this to my doctor and see what she thinks, but I guess she's going to dismiss it like everyone else because they never have time to actually listen and see the bigger picture. They only focus on one detail and try and cure that, but it never works so they think I'm just making shit up for attention. Thank you for this informative video.
How do you feel about animal testing and personalized care? Dr. Shiva truly cares for all beings. He is the only Presidential hopeful who invented technology Cytosolve that helps eliminate animal testing. He is the only one advocating for personal healthcare as opposed to factory farm healthcare. What do the other one note candidates do?
Man this would explain SO many of my problems. I have POTS, likely EDS, I've had many sinus infections, constant allergies, headaches, migraines, GI issues, chronic joint pain, the list could go on. I didn't hear about this till I heard that the "trifecta" is POTS, EDS, and MCAS. Would this be something to talk to the allergist/ENT about?
One of the things that is underlining that could actually be causing you. These health issues is actually underlining brought on by parasitic infections. Please go get yourself checked and tested for parasites, molds, funguses, toxins, bad, bacteria, etc..
Really interesting video. I have a call booked with my GP soon to ask for assessment of MCAS/histamine intolerance. Just hoping he is receptive to this discussion although he has been amazing/open minded with past requests.
It would be great if you could explain how the different lab tests that need to be ordered and how those tests are observed to rule nor out MCAS, and any additional procedures along the way to get it right :)
Be careful with lab tests they don't always rule in or out mast cell Activation Syndrome a lot of this is a clinical diagnosis based on your symptoms and the changes of symptoms it put on a MCAS protocol of meds. Also you need to establish a baseline trytase level and when you're having a flare up if you also have lab work done and there's a percentage difference between your Baseline and what your current flare-up level is they can use that also in the diagnosis process hope this helps and keep searching for answers if one doctor isn't willing to help you there's others out there that are
Thank you for the video, I heard about this syndrome and started researching it and found this video. I'm visiting my immunologist next week because I have all the mentioned symptoms and more. I don't have dermatographia (skin writing) unless the skin turning red quickly counts, but no bumps/inflammation occurs.
I have this and my symptoms are jitters, throat fullness,fast heart rate and high blood pressure. It is frightening and has ended me up in the emergency room.
Wow. WTF. Like I said, the politicians need to put on their big boy pants.. stop all this crap being put in our food as they can make as much money off things that are beneficial for us now that they’ve made the whole world sick. I’ve also noticed myself cursing a lot more 🤬
Went to my doctor with all this stuff. Chronic illness for years. All these symptoms. Get better with antihistamines, but not great. They said that it wasn't MCAS because I wasn't anaphylactic. No treatment options. Live in Canada where healthcare is free, BUT it's impossible to get a second opinion. Enraging.
I'm so intrigued...I've been struggling with severe "LPR" for five years...but even before that started, I started developing all these other symptoms you mentioned here. LPR treatment was rendered useless....I'm still working with a gastro to make sure there's no other problems. However, I've had constant post-nasal drip, tightness in the throat after literally anything I eat, dry cough, heart flutters, chronic fatigue and headaches, moments of standing up only to nearly pass out, pain in my joints and muscles...chiropractor couldn't even help me, itchy skin ALWAYS. Regular OTC antihistamines do nothing...Pepcid does nothing for my reflux symptoms. I've occasionally had pelvic/bladder pain for no apparent reason as well. I'm really starting to wonder...thanks for your video!
My story since getting Covid April 2021. Here we are 2.5 years later and I’m STILL suffering! Stress is the biggest trigger from my MCAS. I have “Asthma” I got diagnosed with a couple years ago, which inhailers don’t even touch because it’s HISTAMINE related. 😑 Benadryl works well but I can’t take that all the time. I’m doing LDA Immunotherapy to help with this BS and food allergies/intolerance. Glad I cancelled that appointment with the “Mast Cell specialist” in Boston. No need to diagnose, since it’s a hard one to diagnose. My Naturopath already made a clinical diagnosis and said that looks like what I have. Also have chronic Lyme disease, which was probably the trigger since I was a kid! FML! Wakes me up every night, so much mucus and hacking and wheezing I can’t sleep! Which just adds to my stress, which then makes the Mast Cells release even more histamine. Vicious cycle and I can’t find my way out. I hope my magnetic Lyme treatment and this LDA works. I don’t see any other options. Reg Dr’s were useless too! 🤬
@@annacastellano4512 Sure. I used to do the GAPS diet to heal leaky gut. After about 5 months I realized I was getting worse, not better! I have since stopped the GAPS and now I just eat an all organic diet, nothing processed. I stay away from the high histamine foods like, tomatoes, Avocados, Spinach. Anything canned. Although I eat peanut butter with my apples 👍🏻 I cook my meals every night and I have salads, but not every day. I have found a HUGE part of MCAS is stress, anxiety, anger and childhood trauma, (which I endured for 9 years). I have been implementing Vagal nerve exercises to help keep me calm, Neuroplasticity exercises, Somatic exercises and TRE, (trauma releasing exercises). These seem to help me a lot. I notice when I get worked up my symptoms flare. I hope this helps too. As far as diet wise I just make sure I’m eating healthy and the foods that need to be organic. I’m also taking good quality supplements like a multivitamin, probiotic, Zinc, Magnesium, Vit D3, Active Folate, and Selenium. I am thinking of adding NAC and Collagen as Collagen helps to repair a leaky gut. Good luck to you! ❤️
Everything started after I was infected with Covid in 2020. Shortness of breath (non asthma related) out of nowhere. Also, it gave me severe asthma. Now the asthma issue is under control, but mcas is still something I have problems with almost everyday. The only thing that has made a huge different is antihistamines. I take Claritin with Famotidine aka Pepcid everyday as soon as I wake up. I wait at least 30 min before breakfast at night. Same thing at nigh. Although, I've noticed that Zertec works better for me at night with pepcid. In 2020 no one knew what was happening to me and it was hell. Tachycardia and shortness of breath (non asthma related) after eating anything. I went through an elimination diet. Meat and water for like two months and it worked. Symptoms got better and I was able to introduce more and more food. I hope it helps.
Thank you for this great video , I want to really focus on this syndrome in my degree in health science as I’ve studied this quite in depth and it fascinates me . I think lots of people are walking around with this , I’ve worked on front line of disease for 30 years and I honestly think more people are allergic to things without even realising it . So interesting. I also have Mcas and it all makes sense to me but only an allergist picked up on me not a GP .
My sons pulmonologist thinks this could be a possibility for him. He’s six and been hospitalized multiple times, I’m very worried and this scares me. We’ve seen multiple doctors over the past few years and hoping we can find some answers
I heard you list many of the symptoms for histamine intolerance. So that left me confused. I have no idea what the difference between the 2 are. If you know you have Hostamine intolerance, how can you tell if you only have that and NOT MCAS? ORRR if you have BOTH? I was expecting to hear what the difference was.
I wish I could find a doctor to listen and help instead of just sending me to specialists who give up after a few years such a ENT and lung doctors. Autoimmune doctors give up after one blood test and an allergy test that lights up like a Christmas tree.
Oh and I am dealing with my arm just necrosed from wasp stings! And I had to have 2 surgeries over the course of a couple weeks. Also I have pseudocholinesterase Defeciency
Oh and I get anaphalxis from pork being cooked around me or eating something contaminated with pork. Now I'm suddenly allergic to Bactrim and have never been allergic to it before.
I know lots of people struggle with this and that is why I make these videos to help people find answers. It’s not a substitute for a doctor but hopefully it helps some. Good luck in your search
Supplements that help, Oil or oregano (natural antibiotic, take for up to 3 days at a time) quecertine, bile acids, black seed oil, DAO is the big one. Take it BEFORE eating histamine. Your symptoms will improve. There’s a lot more that I take everyday to feel kinda normal. Edit to add Oregon Grape Root Tincture, or if you prefer, ResveraCel by Thorne has helped me tremendously. Iodine is also good and needed. Either supplement or just eating some seaweed.
Nice list! Oregano oil is like pure magic! 2 at a time as needed sometimes 3x's a day. I have the rest of your list as well, (except for the DAO which I haven't tried yet.) There are videos about a triad of ED, Mast cell, and POTs that RUclips sent me on the way back from a Cleveland Clinic appointment...looks like some promising info about being tied in with the nervous system.
@@c.m.303 there is a great natural version of DAO by Ancestral Supplements, get the Kidney support. I have no affiliation with anything. Just trying to spread the good news.
When I was 60, my then physician was set to do a bone marrow biopsy because of a 2 day urine collection test that indicated I might have systemic mastocytosis. She ran the urine test again and the levels were more normal so she cancelled the biopsy. She retired and I have a new doctor. Now, 15 years later, I always wonder if I do have it. I sure have most of the symptoms.
I was diagnosed with fibromyalgia anyway when I go see my doctor no matter what I have they blame everything on my fibromyalgia an right now I'm having so many health problems I can't beleive it but I do beleive what you're saying I just wish I didn't have so much pain
Well that’s too bad. There is a lot of overlap with this and fibromyalgia too. The main connection being the immune system. I hope you can get some answers.
I know I have it but Doc I can’t find a specialist in OC Calif that even knows about it. It’s unreal how doctors are so ignorant. I would be dead if I didn’t educate myself.
Well that’s too bad. I think some doctors have not heard of it or bc it is challenging to diagnose and treat don’t want to deal with it. Try a functional medicine or naturopathic doctor. There are also many conventional gi doctors immunologists that hat treat it. You just have to ask first I think. It’s not one specialty that hat treats mast cell and histamine intolerance disorders. Good luck
Have pretty much all of that... but, very true in varying degrees, even from hour to hour. Triggered 24/7, however. Never a complete reprieve from symptoms. Sleep helps a lot; but sleep is often disrupted. Avoiding certain foods also helps. Three Rx meds, and many supplements; that are mast cell stabilizers. Avoiding sun, heat, and attempting to reduce stress (which is nearly impossible). *Also affects eyes! And, mouth; tongue and gums!* Basically system wide inflammation that affects everything... EVERYTHING!! (I so wish that I could get doctor to prescribe Hydroxychloroquin; which is what is prescribed for Lupus.)
I have had all these symptoms and more for 25 years. Back then, nobody talked about MCA. Instead you just got diagnosed with ME, and were then ignored by the medical profession. Oh, and most people with ME also have Pots, but that wasn't called that back then either. There are millions of women with ME. We have been ignored for 50 years.
Thank you for excellent video I am really suffering with Hives past year ..nothing recommended to get to cause.. just using antihistamines and cortisone..become chronic and debilitating ..in all ways 😢thank you 😊
Wow… I have all the symptoms plus I am diagnosed with scare, derma, pulmonary hypertension, restrictive, cardiomyopathy, interstitial disease… But I have always had extreme allergies, rashes, hives, and the brain fog, the chronic fatigue and even neurological symptoms that come along with some of these "allergies" I even had immune thrombocytopenia both times i gave birth, and in times of medical trauma it happens too... hmmmm. Do you think my rheumatologist should explore this?
Well it is hard to say knowing so little about you. Yet I think looking at disease processes in a functional way is a good model for improving your health when you have chronic illnesses. If they are willing to it won’t hurt
@@swintegrative I live in San Antonio Texas and honestly the physicians don't work well together here. Do you have a resource to find a good functional medicine center? They are referring me to Boston in November for Rheumatic Cardiovascular Team first the restrictive Cardiomyopathy. PH specialist is pointing at cardiology and cardiology saying we think its the PH" 🤷♀️ meanwhile i am having syncope episodes
@swintegrative GPS and drs don't know much about it. Said its chronic Idiopathic spontaeneous urticaria but I know it's much more as when I'm not on xolair I suffer joint pain, Ibs like symptoms, chest pain etc the hives are bad but that's just one symptom
Thank you, may I ask my daughter is allergic to everything food, meds, environmental and much more. If she’s eating some of the foods she’s allergic to…not the deadly ones but still fairly high. Anyway she could develop this from that too correct? Most of these symptoms are her to a T. Thank you for the information. You’re a blessing
I have pots and autoimmune gastritis causing anemia, I have allergies to lots of things like dust mites and fur and pollen, I get urticaria itchy watery eyes and allergy asthma and constant blocked nose and red cheeks, I get very bad pressure headaches and indigestion and bloating. I have joint pain and chronic fatigue the list goes on would it be worth going to the drs to see if I have MCAS?
No on body odor, any doctor w experience but the typical would be allergist, immunologists functional medicine, or naturopathic doctor. Any of these categories but not all have experience with it so could be dead end.
I’m trying to watch every video out there to determine what my son has. He has chronic mucus, blows his nose constantly, spits phlegm up non stop. Yes we’ve been to allergy Dr, CT scan, bloodwork, homeopath, you name it. Still can’t figure it out. We removed gluten, dairy, corn etc from diet. I was wondering if this was it but doesn’t seem so.
I have had a couple random attacks that were pretty text-book mast cell activation. The first I thought was scombroid poisoning (first thing that came up when I googled the symptoms), but I hadn’t ate anything that would cause that. The second was much worse. Not only the diarrhea and vomiting, but also profuse sweating, itching and tingling sensations all over, racing heart, extremely dizzy, feeling out of breath for no reason, unable to stand, and finally passing out. My wife pointed out my skin was a weird brownish red and I was itching everywhere afterwards. I didn’t feel completely better until I took a benadryl. The whole thing lasted maybe 2 hours tops. I saw an allergist and ruled out all kinds of allergies. No definite answer. I have been taking cetirizine daily for over a year, but it has unfortunately caused other problems. I haven’t had an attack since but I’m having a hard time with the side effects of taking antihistamine all the time. I am constantly sleepy during the day, can’t sleep at night, and always constipated. I really need to find another way to treat whatever this is, but I am very afraid of having another attack. I do not think my doctors truly appreciate how scary this is. I had a bunch of blood and urine work any everything looked normal. The next step was a bone biopsy, but I never got the referral as I was worried about the procedure and just let it go. Even before these attacks I have had treatment resistant depression all my life. My depression feels different from the norm as it can come and go quickly for no reason and I also experience a lot of weird physical sensations like being very lightheaded or feeling a weird pressure behind my eyes. Its easy to for people to think these are just normal “psychosomatic” symptoms, but that feels dismissive to me. I really believe I am feeling sone kind of neuro-inflammatory symptoms that are not just normal depression. I also had mild eczema before I went on antihistamines, but I never thought it was connected. Now I am suspicious all of these things are somehow connected. Its just hard to convince doctors.
@@swintegrativeYes. Its frustrating that acute attacks are infrequent. Its not that I ever want it to become more frequent, but its so hard to test. The second attack really felt like I was going to die. I had never been so weak I couldn’t stand up or walk. I had locked the bathroom door and didn’t have my phone with me. My wife could get to me until I crawled from the toilet to the door. When I reached up to open the door is when I passed out and hit my head against the door. I probably should have called 911 but I felt better after I passed out. I still had the itching but I was feeling like my blood pressure was returning to normal. It must have been so low with how dizzy and uncomfortable I felt. I just took a benadryl, got all my sweaty clothes off, and laid in bed until the next morning.
@@marshallsweatherhiking1820 my daughter has episodes similar to yours. Very scary! 911 is of no help. Neither are emergency room visits. They don’t know what to do.
I went to several specialists for my different and strange symptoms. No one was able to help me, they just wanted to prescribe depression meds. I started doing some research and found the Mast Cell 360 website and learned a lot. I joined a FB group MCAS and one of the admins does consulting and told me that I probably have Oxalates and Salicylates issues as well. So long story short, after following a low-oxalate diet and doing Epson salts footbath my anxiety, low blood pressure and pains starting to go away. The Web Mast Cell 360 can give you a lot of information.
I have eoe, headaches, wheezing, Shortness of breath, trouble remembering things, depression, anxiety, chronic pain in my muscles, arthritis in my back, numbness/tingling sometimes to my face and hands, I snore, I get different looking rashes - a mix of rashes from whelps, hive looking bumps, these white circle things on my palms and feet that are very painful and incredibly itchy, very rare, but sometimes I get a heart palpitations. My age is 35 if that matters Does this sound like this or something else? Any help is greatly appreciated.
Omg reading this, I finally feel like I can be apart of a community of people who UNDERSTAND! Like I finally don’t feel alone because other people are experiencing things like this too!! I’m 27, and literally experiencing the exact same things you’re describing, my doctors look at me like i’m an idiot.
@@FlawlesslyFee I have a twin sister that is going through almost the exact same thing. It can be hard going to so many different kinds of doctors and still not getting an answer as to what is going on. Keep hanging in there girl. Keeping you in prayers. I hope they find out what is going on and help you to feel better.
What helps me is omad dieet, low histamine food, no sugar or processed food. My sinussus were like i have never known in my life and depression and tiredness left. Felt great after a day or two. Got a uge relapse when i ate pineapple and a cookie. Nervous, swollen eyebags and face and so tired. Also quercitine, now starting with tulsi and milk thistle as blocker. Hope it will work. New to this all just 1.5 week in due to long covid diagnose that wrecked everything. But it helps allready soooo much, allergies were allways a thing for me and some parts are better allready than before i got ill. I will find the answer. Because i miss cheese and fuet. A lot... 😂😂😂
I think there's one guy at Mayo clinic that may run a bone marrow test, but you have to be having a current flare up for it to test positive... where is everyone else getting diagnosed? I'm currently being my own guinea pig and throwing high doses of quercetin, NAC, bromelain, rutin, resveratrol, vitamin C, HistDAO, and a supplement called Antronex at this problem and it seems to be working so far. Sam-e helps considerably with the brain fog. NAC, acetyl-l-carnitine, and an adrenal complex are helping with the fatigue. Gallbladder enzymes and the quercetin are helping with the incessant, watery stools. Haven't found anything that works for the rashes, though. I use beta methasone cream right before I see my dermatologist so she stops trying to prescribe more harmful medications (like oral steroids, which make me both sui and homicidal). It sucks, praying for everyone here watching this and going through it.
naturopathic doctors and functional medicine doctors are trained to look at the connection between systems so this might be a good place to look when trying o find a doctor for mast cell activation. These are not the only doctors that treat it but they at least will have some understanding of it.
My family has this, and it became active after getting the vaccines. Two family members had it and not taken the vaccines. Is this something that can be genetic? I have a lot of sensitivities, but I’m not as bad as my other family who are diagnosed with it. We all have MTHFR, not sure if that matters, but interesting nonetheless.
There are specific genetics around histamine intolerance and some overlap with MTHFR and methylation. Usually there is more going on than just these genetics though. Ultimately it is a problem with the immune cells.
What kind of Dr should i go to to have the right tests done? I have been dealing with many of this symptoms for years. I'm finally realizing there's something going on. I have other symptoms not mentioned here as well.
Have you heard of the triad between MCAS, Ehlers Danlos, and POTs? The video suggested it is a combination of medication and retraining the nervous system. It's not exactly my diagnosis but in the same family and the symptoms fit, what type of doctor treats this?
How would I talk to my doctor about wanting to look into this? I started working out again about a week ago and suddenly started developing hives about a day later, I’ve since begun to understand that the hives are dermatographia (tested at home only by gently scratching my skin in random places). I’ve also been suffering pots like symptoms since I was very young, but they’ve seemed to get worse over the past two years (I’m 25).
Unfortunately doctors don’t even know it is a thing. Likely you will have to see a functional medicine doctor or naturopathic doctor but not all of these doctors have experience with it either. There are conventional medicine doctors that treat it too usually allergist or immunologist. Sorry it is not easier good luck!
You mentioned joint problems at the beginning, how would that present with this syndrome? I’ve been chasing doctors for a decade and gotten some answers but not many. So far I’ve been diagnosed with oesophageal dismotility and gastroparesis. I also have joint problems that are still being investigated along with migraines, brain fog, suspected endometriosis and a few others. My skin is very sensitive and it takes a lot for me to bruise. Don’t know if any of this is relevant but you said it can effect all sorts of systems in the body 🤷🏻♀️
Look into thiamine b1 deficiency and other b vitamins in general and magnesium deficiency. My knees used to burn chronically and had a lot of other nerve and muscle issues. These two things helped tremendously.
Yes it could be but could also be the other way around mast cell activation rather than fibromyalgia. Mast cell is just a model used for more effective treatment and resolution of symptoms and health problems
This video is on mast cell vs histamine intolerance so it should give you some ideas. I do have some coming on treatment of high histamine soon. ruclips.net/video/vqFmdK0rXCM/видео.html
Can overactive mast cells cause chronic pelvic and bladder pain? I have CIRS so my innate immune system responds to invaders via mast cells, inflammation, etc. but my adaptive immune system doesn’t get the message. So, I’m in a constant state of alarm trying to activate the adaptive immune system. This means I’m in a cycle of constant inflammatory immune response. I have severe undiagnosed pelvic pain. It feels like massive inflammation and burning. Like hot coals burning me from the inside out. Hysterectomy did not help. It’s in the low pelvic and supra pubic area. I feel it along both psoas muscle’s as well.
It’s true that it can be difficult to diagnose but there are standard diagnostics tests that can be done but false negatives are common. When the test are positive it can be helpful to have that clarity.
Thank you .. I diagnosed myself last year and seems I’m right by your symptom check! My Drs say nothing but say talks an allergy med which I can’t as I react to most meds! I can take half a loratadine.. xyzal was great for a year but I react to it now, it literally makes me into a zombie and hard to wake up all day! If you might say more on how to treat MCAS! So fed up of not getting help from doctors! I take mostly supplements but even those I have to be careful with! Great video thank you!
My blood pressure is up... I've also been diagnosed with Mixed Connective Tissue Disease. Struggling to breathe right now. I had a bout of sinusitis after eating apples of all things 😢😢😢
How do you get diagnosed? What kind of doctor is best to diagnose? What are the tests? I had intestine biopsies done while having colonoscopy and they ere negative. I THOUGHT that eliminated Mast Cell. Evidently not.
This is me hypermobile rashes all the time I react almost everything I had mold exposure, which activated my limes disease, and Epstein-Barr palms of my hands are red and itchy. All over all the time my scalp is the worst ice burning itch. All I ever wanted to be was taken seriously too they think you’re crazy and you’re not and it’s a living hell fix your heart rate your autonomic nervous system affect you from the top of your head to your toenails
Pots Ed’s and micas. It’s just hard to find doctors my network around me said they no longer take mcas patients per new protocols. What the heck!? I’m at a loss in the system. I need help.
@@swintegrative thank you! Since I had COVID in 2022 I have been having many of the symptoms of MCAS along with a progressive issue of inflammation that caused perivascular dermatitis, & even working with several doctors we haven't nailed down a cause. I have been having many histamine reactions and the only things that have done anything to help are taking huge antihistamine doses and doing meditative rope bondage that causes the swelling to go down afterward and we think that response is tied to cortisol release, but we're not sure. It's been scary with the reactions and progressive swelling, etc. thanks!
Sorry to hear that. Sounds like you have a lot of tricky things happening in your body and with COVID can definitely activate mast cells. good luck to you
Have been battling for 54 years, since a hospitalized case of Mononucleosis at six years old. It has been a life long struggle for legitimacy with health care providers to this day. Many diagnosed issues, but minimal assistance. I will continue to treat the worst symptoms, eliminate histamine and stress (in whatever form), and do my own research. It is the only hope I have. Was just sent to a thyroid specialist, who asked why I was there. She said I have an immune issue, not a thyroid issue, as the immune system is attacking my thyroid and intestinal systems. She said I needed an Immunologist, which is what I told the General Practitioner four months ago! She is supposed to tell the GP for me. Hope is all I have that the GP cooperates.
Hi Do eosinophil levels have anything to do with mast cell activation syndrome, like in allergic reactions ? I have symptoms what I believe to be mast cell activation syndrome, but my eosinophil levels are consistently only 0.01. I was recently stung by wasps, but had very little to no reaction. Would someone with mcas react to insect stings?
Hi! I'm pretty sure I suffer from this since almost 3 years back. I got acutelly ill after trying propanolol for the first time for slightly high heart rate and my symptoms have persisted ever since except the most severe ones. I was 37 years old at the time. My symptoms is vision changes like seeing halos around light sources, thousands of beams from car lights at night, high distolic blood pressure, palpitations I can feel through out the body. A big spot on the nose filled with telangiektasia(?), hip and lower back pain and pretty severe erectile dysfunction. When I first got ill my distolic BP went up to 125. I got vertigo and ended up at the emergency. They thought it was a panic attack and sent me home but the issues got worse and I went back. They then prescribed metoprolol due to the high heart rate. And after taking that my penis got all numb, I got a severe back pain, numbness in the inner ties, the anus, lost sfinkter control and went back to the emergency. But this was during covid/delta and I never got any real help. They told me to go to my regular doctor instead of the emegency. Eventually they let me have a MRI a few months later but that didn't reveal anything. I later got in contact with a cardiologist like maybe almost 2 years later of suffering palpitations every day. She prescribed ivabradine instead. And this actually helped to get the heart rate in check. Buuut when I had not eaten I had regular heart rate, so instead ivabradine took down my heart rate too far. Also ivabradine only slowed down the heart and didnt't help with the palpiations. The heart beats could still be felt throughout the body. So it wasn't until I eventually was recommended looking into MCAS by someone on facebook and so I did. And after excluding all histamin rich foods for a month I eventually stopped having these palpiations. I have mentioned this to my doctor and told her what histamines I should have. So she prescribed them even though I could get the over the counter. But she havent sent me to a hemotolagist or anything? And I still have issues if I eat something containing histamine. Especially if I don't take my anti histamines. And anti histamins are bad for erectile function. Soo I don't know what to do now really. If I forget to take my anti histamines I get a heart rate of 120-130 sitting up and around 100-110 lying down. But other than the high heart rate the palpitations are severe and I get super fatigued for about 5 hours after a meal. I can't live like this. I can't work. I have to live with my parents and are now 39 years old. I did have a ME/CFS diagnosis. But I'm starting to believe it may have been MCAS this whole time.
So sorry to hear of your current condition. I can relate on some level and just beginning my journey into MCAST. I hope I can get a wise and knowledgeable doctor as the last one was useless. Best Wishes!
I have a loved one who thinks she has this and is on the end of her rope. Is there a way to diagnose this for sure? Are there any treatment options that could help and give her hope? I’m afraid she might not be able to make it much longer. Any information would be greatly appreciated.
Probably just needs to see a doctor that can diagnose and treat this. You can look for functional medicine, markers, naturopathic, doctors, immunologist/allergist but you have to ask them if they actually treat this condition.
I have spent my whole life from childhood trying to get a doctor, any doctor to take me seriously concerning my symptoms, but I always was written off as a hypochondriac, drug seeking, having mental health issues and just being over weight. I turned 51 last year and now spend a lot time in a wheelchair. About 2 years ago I got sick of doctors telling me it’s in my head and started to research. Ends up I have have EDS. I was formerly diagnosed last year. Now the secondary diagnosis’s are coming in. I also have MCAS, POTS, osteoarthritis, osteoporosis, my discs are degenerating, I now also have scoliosis and the beginnings of Ankylosing Spondylitis. All I ever wanted from a doctor is to be taken seriously.
Sometimes listening is the best form of medicine.
Please protect yourself super well from covid. It can be sheer hell. I have long covid now on top of other stuff.
Does vit C help calm your histamine?
@@MM-qp4pd I take an adequate amount of vitamin C, but the answer is mostly no. My MCAS symptoms are very severe.
@@OnlyMe-uk6nh ah ok cause I hear of people and have read research who swear by it.. I guess as in all solutions it depends on the person. Liposomal, taken with other drugs, food etc. can make a difference too. Thanks
Beneficial overview. Based on experience and other people's testimony, probably 98% of all doctors have little to no (and I mean no, none) knowledge of this. As in they think patients are making up the symptoms and the term. So, it's nearly impossible for most people to get diagnosed at this point in time, (though it's improving slowly) patients are ignored and told to see...a shrink. So yes, videos raising awareness...help.
Yes it is under appreciated.
I’d have to say this is completely ignored. Since I’m not a doctor, I have no problem saying the drug companies are corrupting. Every one that is supposed to make us safe and better well almost. There’s a few who are willing to do something about it. The politician that puts these drug companies in their place and makes insurance available across-the-board is the politician that will hang around for a long time.. I mean we don’t wanna keep seeing owners of drug companies and their spouses lynched in their swimming pool do we?🤨
I’m going to my immunologist to get tested after being super messed up from fibromyalgia chronic fatigue syndrome and chronic migraines gastroparesis IBS and functional dyspepsia and more with no cause to be found. I researched online and said immunology Dr can test for it
Thank you for covering this!!! I’d love to hear what you do to treat this? I’m getting some tests done and if I have it I’m looking into what I can do to treat it. I’ve been on low histamine and low inflammation diet for years and lots of supplements, lifestyle changes so I can’t imagine what else I could do besides added a medication of someone kind and preferably homeopathic or injection 🤞
I have something. Every smell triggers me to drown in phlegm. And I do mean drown. Like ER ambulance stay in hospital for days on nebulizers and steroids.
I can't even go inside people's houses. I need fresh air 24 7
It started as mold in my basement but after I got sick from that.. had no idea I had mold. New house.
After that every smell did it to me. Even like basic smells of soap will choke me. And then the phlegm comes so bad I drown.
And it only subsides when I go outside for hours. I even sleep outside now with a heater and a sleeping bag and tarp lol.
I own a house and live in my yard 🤣 and even clean clean houses do it to me. Just takes longer. No dust no nothing. Still the indoor pollution puts me into an attack.
this is me…migraines POTS unexplained heart racing or palpitations , skin rashes , struggle w temp changes, pure exhaustion 24/7, IBS, dizziness on the daily, chronic sinus issues, joint pain starting in my 20s, extreme water retention, swollen lips eyes hands so on and so on no one knows why I’m so sick!!!! Wow I am blown away by this as I have an answer now and can bring this up to local doctor!
Yep that sounds like histamine sx to me
You might find the mindful gardener helpful ( you tube) he had mcas and has overcome it! Wishing you all the best 🙏
Get your thyroid checked by an endocrinologist as well. I have MCAS and I also had thyroid issues that were unrelated. If I had been diagnosed with MCAS, the thyroid issue would have been missed. Good luck on your journey. Been in your shoes. Took me 50 yrs to get a diagnosis and SOME relief.
Did you mention this to your doctor? Can you share if you have seen any improvement?
And they will do nothing. 😢
WOW!!! "over-sensitization to drugs, supplements"........IS THAT EXPLAINS a ton of things!!
You’re the first doctor that’s explained symptoms aside from the predictable allergic symptoms. Thank you!
Your welcome
The first person you watched on RUclips… there are many WAY more knowledgeable people on here describing actual things you can do. Start taking oil of oregano, bile acid, a DAO supplement before eating histamine
YOUGoodness! I am forwarding this video to my doctor who told me a low histamine diet was not a medical issue, and the doctor who wrote a cookbook was just selling BS! I am changing doctors, I do not have time or energy to EDUCATE the person controlling MY health! Honestly with a high school education, it is way above my pay grade to discern all the information on MCAS, hEDS, Food, Chemical and Environmental Allergies, difficulty with EMF, 5G, Fibromyalgia, and let’s not forget psychology issues OCD, ADHD, Depression and cPTSD! It is SO easy for doctors to just mark the CRAZY box, collect their fee and move down the 15 minute healthcare conveyer belt.
Thanks for sharing
Then push pills on you for depression and anxiety, pills which can make you sicker.
@Amy-of7GW: so EXACTLY what I have been going through since age 7. :(
Your message is exactly what’s in my brain and everything I wanted to say
It’s 5 minute conveyer belt
I’ve been dealing with this for 28 years! Doctors didn’t know what to do with me. It’s so good having it recognized now.
Yes it is good to be able to identify things but more work is needed in this space.
I got diagnosed with POTS back in september and ankylosing spondylitis in august I did a mast cell workup as well (still don’t have any word of what the results are for that) and I thought it was all a scam because after 2 years of fighting the drs for a diagnosis other than anxiety I got these two conditions that I never heard of just seemed off to me but here i am now wheelchair bound at 26 years old no income was hospitalized and put in a nursing home for almost a month and still going through hell and back because “not enough specialists know enough on how to treat it” I get pinpoint rashes, skin writing, sometimes hives and itching, rapid weight loss, fatigue, tachycardia, blood pressure spikes and drops, hypoglycemia, arthritis, weakness, digestion issues, intense pressure headaches that ive never felt in my life its nothing like a migrane or standard headache, body temperate doesnt regulate correctly, dry mouth eyes and nose as well as taste and smell issues, acne, easy brusing, and the list goes on and on but every blood test and mri or ct scan always comes back normal so they dont considerate it life threatening and send me home everytime
Hi, Sorry to hear what you are going through. How are you feeling now? Lots of symptoms are similar to yours and all the tests came back negative.
You sound like my twin. Have you been bit by ticks? If so have them check you for alpha gal syndrome cost $50.
@@vipinackavil6733 AND, the doctors have no critical thinking skills. The diagnosis is run by lab results. If it doesn't show on the lab, you do not have it. I went thru a lot in April 2016. Finally got to a rheumatologist in Jan 2017. After all the tests were done, I was diagnosed with Sjogren's, because some of the novel antibodies on the test were elevated. After years of stupid MDs and PAs, I quit taking my hydroxychloroquine and stopped going. Whenever I went in there with symptoms, they thought I was crazy. It is called gaslighting. If the doctor doesn't know, then you have mental problems. Many neurologists that could not figure out what their patients were complaining of, so they are now neuron-psychiatrists. Medical system is getting worse and worse and worse. I am a retired nurse, so I will deal with the symptoms. It isn't worth the effort to be gaslighted when you are paying thru insurance to get it.
Might be a side effect of the vaccines. Look at timing.
This is so helpful. I had chronic “utis” that strangely had no bacteria on testing. Thankfully I had a thorough urologist who discovered it was actually a problem with mast cell activation. The relief to finally have a cause for the pain was incredible.
Glad it was helpful and you found some answers
Yes, another video for a deeper dive into this subject. Please and thank you.👍🏾😀
Coming in a few weeks
Also, if you could please let me know how other specialists may get a hold of you .
LikeThe Neuropsychologist, I I’m scheduled to see .
As I would love nothing better than to get someone else on the same page so we can bring awareness as to the mental ramifications. thank you once more as I do believe you are heaven sent. 😇👌
I was diagnosed with MCAS/POTS 3 years ago. You hit on a lot of what I deal with.
Thanks for sharing
How do you manage it? My dr always tells me to take Benadryl haha
Does vit C help calm your histamine?
Wow, you just summed up my daughter. She’s been diagnosed with POTS , JIA, Asthma, Eczema, Gerd , Dermographia, all kinds of digestive issues, has IBS symptoms (not diagnosed) and her dr told us mass cell issues, but not diagnosed MCAD. And possible EDS. Now she’s having trouble with her heart. Because her blood pressure goes so extremely high to extremely low. She is also having trouble with multiple utis , kidney issues. The list goes on .
And she just turned 20. Unfortunately we no longer have health insurance. Nor can we afford to buy it outright on our own. So she just suffers . It’s hard as a Mom to feel so helpless . All I want to do is help my child. Especially with her being so sick .
Life is hard sometimes.
Yes, that is a lot and I think it can be overwhelming when you have all those different diagnoses. Just remember that it is possible to improve your health and get better. I know this from working firsthand with patients. It is such an individualized process but my videos are aimed at helping you understand some of the fundamentals of this. Good luck to you guys.
I can sympathize with you. My daughter was 26 when she started with this. I try to be positive for her and I do feel there’s an answer but it’s hard when she gets so down. I pray the Rosary daily and that has helped me. And I just keep researching! Best of luck to y’all!
Thank you. I have been dealing with Histamine and Mast Cell disease since 2021. It is a nightmare.
Yes it can be tricky
Does vit C help calm your histamine?
Quecertin woodworm soursop tulsi meringa tea gave me a new baseline
Low histamine dieet next to omad no sugar and processed food. After three months i can eat more again. Lots of symptoms are gone.@@MM-qp4pd
Forgot to mention charcoal. 😊
Thanks for laying this out so clearly. Helpful indeed. We are NOT crazy and we do go through better/worse cycles. Extremely crazymaking.
Glad it was helpful!
Gee this was short and sweet. I liked the breakdown. Helped me understand my symptoms more clearly
Good thanks
Thank you! For the first time in 40 years, my many symptoms are starting to make sense. BTW, how about a follow-up video on treatments, if any.
More on this topic coming in the next few weeks
the simplest thing a person can do is eat healthy. zero fast foods. OMD. Intermittent fasting. one can of sardines a day. no gmo foods. get out in the sunshine everyday and expose as much of your skin to the sun as possible w/o burning red. I wear layered clothe and sit in the 35 degree sunshine with zero wind. as the sun starts to cook me, I remover layer by layer, until I'm down to my gym shorts. no sunscreen. natural vitamin d is the superfood our bodies need. and start going barefoot. the natural connectivity with the earth is also a good thing. It has made my knees and back stronger while reducing inflammation.
These are all good healthy suggestions so thanks for contributing. One thing on the sardines… that may be one of the highest histamine containing foods so one should be cautious w that one although it is otherwise healthy to eat.
My mom had this. I did not know of it at the time. I feel I failed her. She died of a reverse fall down 12 steps. Pretty much instant death. Thanks for the video. She was digging at her skin it was so itchy. God damnit. This sucks.
So sorry to hear that and sorry for your loss.
@@swintegrative Thank you. I just was at a friends today. hes very sick and dont know why. Same symptoms. I told him about mast cell and he was like holy f, thats it. after he googled it. I got him some second gen antihistamines to try (clarion) and we'll see. Hoping that makes up for me not researching hard on mom. Id love to talk to a trauma surgeon about this so i can have some closure.
Also bladder discomfort - feels like UTI - similar to interstitial cystitis.
Yes indeed
That sounds like oxalate dumping??
Not oxalates. It happens when I don’t drink enough water. It’s been happening for 45 years. Mast cells release histamine and antihistamines relieve the symptoms.
Sounds like you know your body leslie. Thanks for the feedback. Interesting about the water.
Please do another video….what can help with this syndrome?
ok noted
I've had issues since childhood and came to the conclusion that I must have hEDS, which I had a specialist confirm. Unfortunately she was just a research scientist and can't make formal diagnosis so the point was for my doctor just confirm it, but the refuse. I've had issues with random allergies comming and going, issues with asthma that can't be treated, cardiovascular and abdominal issues, basically everything mentioned in this video. I'm going to mention this to my doctor and see what she thinks, but I guess she's going to dismiss it like everyone else because they never have time to actually listen and see the bigger picture. They only focus on one detail and try and cure that, but it never works so they think I'm just making shit up for attention. Thank you for this informative video.
Sorry to hear that it sounds very frustrating and I think a lot of people are in a similar situation. Glad the video helped
Interesting re the heightened sensitivity to medications & other influences. Thank you👍
Glad you enjoyed it!
How do you feel about animal testing and personalized care? Dr. Shiva truly cares for all beings. He is the only Presidential hopeful who invented technology Cytosolve that helps eliminate animal testing. He is the only one advocating for personal healthcare as opposed to factory farm healthcare. What do the other one note candidates do?
Man this would explain SO many of my problems. I have POTS, likely EDS, I've had many sinus infections, constant allergies, headaches, migraines, GI issues, chronic joint pain, the list could go on. I didn't hear about this till I heard that the "trifecta" is POTS, EDS, and MCAS. Would this be something to talk to the allergist/ENT about?
Yes it’s a good place to start you may need to see someone that specializes in treating this condition though like functional medicine.
I know. It’s hard to explain unless you’ve been sitting where you were I have, and just heard this.. oh yes, the joints forgot that. Good luck.
🤞❤😊
One of the things that is underlining that could actually be causing you. These health issues is actually underlining brought on by parasitic infections. Please go get yourself checked and tested for parasites, molds, funguses, toxins, bad, bacteria, etc..
@@swintegrativefunctional medicine is not covered by most insurance and most people don’t have the funds.
Really interesting video. I have a call booked with my GP soon to ask for assessment of MCAS/histamine intolerance. Just hoping he is receptive to this discussion although he has been amazing/open minded with past requests.
Yeah hope that goes well
It would be great if you could explain how the different lab tests that need to be ordered and how those tests are observed to rule nor out MCAS, and any additional procedures along the way to get it right :)
Be careful with lab tests they don't always rule in or out mast cell Activation Syndrome a lot of this is a clinical diagnosis based on your symptoms and the changes of symptoms it put on a MCAS protocol of meds. Also you need to establish a baseline trytase level and when you're having a flare up if you also have lab work done and there's a percentage difference between your Baseline and what your current flare-up level is they can use that also in the diagnosis process hope this helps and keep searching for answers if one doctor isn't willing to help you there's others out there that are
So I think my teenage daughter has this. She has every one of those symptoms. And how can I pursue this or what kind of doctor should I see
@@Mikey-w8jintegrative medicine doctor
Thank you for the video, I heard about this syndrome and started researching it and found this video.
I'm visiting my immunologist next week because I have all the mentioned symptoms and more.
I don't have dermatographia (skin writing) unless the skin turning red quickly counts, but no bumps/inflammation occurs.
It counts.
I have this and my symptoms are jitters, throat fullness,fast heart rate and high blood pressure. It is frightening and has ended me up in the emergency room.
Wow. WTF. Like I said, the politicians need to put on their big boy pants.. stop all this crap being put in our food as they can make as much money off things that are beneficial for us now that they’ve made the whole world sick.
I’ve also noticed myself cursing a lot more 🤬
Extremely frightening.
Might be a side effect. Look into that.
Thank you Doctor! You described my symptoms very well, especially the generalized over-sensitivity. I appreciate you for posting this. Thank you!
my pleasure!
You are so welcome. Thanks for joining!
Went to my doctor with all this stuff. Chronic illness for years. All these symptoms. Get better with antihistamines, but not great. They said that it wasn't MCAS because I wasn't anaphylactic. No treatment options. Live in Canada where healthcare is free, BUT it's impossible to get a second opinion. Enraging.
Does vit C help calm your histamine?
Look up Dr Ben Lynch, Seeking Health website. He might have info for you. Doesn’t see patients but has good information.
@@MM-qp4pdyeah it can
I would see a naturopathic doctor
Skin, digestive, burn sensation in front and back of my body. I was diagnosed two weeks ago
Good I hope u get help from that diagnosis and treatment
I'm so intrigued...I've been struggling with severe "LPR" for five years...but even before that started, I started developing all these other symptoms you mentioned here. LPR treatment was rendered useless....I'm still working with a gastro to make sure there's no other problems. However, I've had constant post-nasal drip, tightness in the throat after literally anything I eat, dry cough, heart flutters, chronic fatigue and headaches, moments of standing up only to nearly pass out, pain in my joints and muscles...chiropractor couldn't even help me, itchy skin ALWAYS. Regular OTC antihistamines do nothing...Pepcid does nothing for my reflux symptoms. I've occasionally had pelvic/bladder pain for no apparent reason as well. I'm really starting to wonder...thanks for your video!
It was brilliantly explained 😊
Thank you.
My story since getting Covid April 2021. Here we are 2.5 years later and I’m STILL suffering! Stress is the biggest trigger from my MCAS. I have “Asthma” I got diagnosed with a couple years ago, which inhailers don’t even touch because it’s HISTAMINE related. 😑
Benadryl works well but I can’t take that all the time. I’m doing LDA Immunotherapy to help with this BS and food allergies/intolerance.
Glad I cancelled that appointment with the “Mast Cell specialist” in Boston. No need to diagnose, since it’s a hard one to diagnose. My Naturopath already made a clinical diagnosis and said that looks like what I have. Also have chronic Lyme disease, which was probably the trigger since I was a kid! FML! Wakes me up every night, so much mucus and hacking and wheezing I can’t sleep! Which just adds to my stress, which then makes the Mast Cells release even more histamine. Vicious cycle and I can’t find my way out. I hope my magnetic Lyme treatment and this LDA works. I don’t see any other options. Reg Dr’s were useless too! 🤬
Yes this can be very tricky to treat and varies in severity but stick with it.
@@swintegrative Thank you, I will!
@@leannshort2211 do you mind sharing your diet?
@@annacastellano4512 Sure. I used to do the GAPS diet to heal leaky gut. After about 5 months I realized I was getting worse, not better! I have since stopped the GAPS and now I just eat an all organic diet, nothing processed. I stay away from the high histamine foods like, tomatoes, Avocados, Spinach. Anything canned. Although I eat peanut butter with my apples 👍🏻
I cook my meals every night and I have salads, but not every day. I have found a HUGE part of MCAS is stress, anxiety, anger and childhood trauma, (which I endured for 9 years). I have been implementing Vagal nerve exercises to help keep me calm, Neuroplasticity exercises, Somatic exercises and TRE, (trauma releasing exercises). These seem to help me a lot. I notice when I get worked up my symptoms flare.
I hope this helps too. As far as diet wise I just make sure I’m eating healthy and the foods that need to be organic. I’m also taking good quality supplements like a multivitamin, probiotic, Zinc, Magnesium, Vit D3, Active Folate, and Selenium. I am thinking of adding NAC and Collagen as Collagen helps to repair a leaky gut.
Good luck to you! ❤️
Everything started after I was infected with Covid in 2020. Shortness of breath (non asthma related) out of nowhere. Also, it gave me severe asthma. Now the asthma issue is under control, but mcas is still something I have problems with almost everyday. The only thing that has made a huge different is antihistamines. I take Claritin with Famotidine aka Pepcid everyday as soon as I wake up. I wait at least 30 min before breakfast at night. Same thing at nigh. Although, I've noticed that Zertec works better for me at night with pepcid.
In 2020 no one knew what was happening to me and it was hell. Tachycardia and shortness of breath (non asthma related) after eating anything. I went through an elimination diet. Meat and water for like two months and it worked. Symptoms got better and I was able to introduce more and more food.
I hope it helps.
Have you seen bruising?I get easily bruised it’s become a big problem. I have all the symptoms you talked about. I am working with a doctor, thanks
Yes bruising has been associated with MCAS
Thank you for this great video , I want to really focus on this syndrome in my degree in health science as I’ve studied this quite in depth and it fascinates me .
I think lots of people are walking around with this ,
I’ve worked on front line of disease for 30 years and I honestly think more people are allergic to things without even realising it .
So interesting.
I also have Mcas and it all makes sense to me but only an allergist picked up on me not a GP .
I think I might have this, ive been mostly bed ridden I always feel out of breath and tired all the time. Hopefully I get answers soon.
Yes I hope you do too. Good luck!
Please share possible interventions that I can use and also treatments that Dr's. use can use I feel desporate 😢
So what do you do? How is it healed?
My sons pulmonologist thinks this could be a possibility for him. He’s six and been hospitalized multiple times, I’m very worried and this scares me. We’ve seen multiple doctors over the past few years and hoping we can find some answers
I heard you list many of the symptoms for histamine intolerance. So that left me confused. I have no idea what the difference between the 2 are. If you know you have Hostamine intolerance, how can you tell if you only have that and NOT MCAS? ORRR if you have BOTH? I was expecting to hear what the difference was.
yeah great point! I made a video on the difference between the two hope this helps. ruclips.net/video/vqFmdK0rXCM/видео.html
Will you please talk about the connection between EDS and MCAD?
Noted
Yes, please.
I wish I could find a doctor to listen and help instead of just sending me to specialists who give up after a few years such a ENT and lung doctors. Autoimmune doctors give up after one blood test and an allergy test that lights up like a Christmas tree.
Oh and I am dealing with my arm just necrosed from wasp stings! And I had to have 2 surgeries over the course of a couple weeks. Also I have pseudocholinesterase Defeciency
Oh and I get anaphalxis from pork being cooked around me or eating something contaminated with pork. Now I'm suddenly allergic to Bactrim and have never been allergic to it before.
Now they're telling me I MAY be suddenly allergic to wasps but they don't know....
I know lots of people struggle with this and that is why I make these videos to help people find answers. It’s not a substitute for a doctor but hopefully it helps some. Good luck in your search
Amazing video👏 thank you! 👍 ✌️😎
Thank you! Cheers!
Amazing Ive been dealing with this for years they couldnt find anything wrong with me many doctors
Supplements that help, Oil or oregano (natural antibiotic, take for up to 3 days at a time) quecertine, bile acids, black seed oil, DAO is the big one. Take it BEFORE eating histamine. Your symptoms will improve. There’s a lot more that I take everyday to feel kinda normal.
Edit to add Oregon Grape Root Tincture, or if you prefer, ResveraCel by Thorne has helped me tremendously.
Iodine is also good and needed. Either supplement or just eating some seaweed.
Nice list! Oregano oil is like pure magic! 2 at a time as needed sometimes 3x's a day. I have the rest of your list as well, (except for the DAO which I haven't tried yet.) There are videos about a triad of ED, Mast cell, and POTs that RUclips sent me on the way back from a Cleveland Clinic appointment...looks like some promising info about being tied in with the nervous system.
@@c.m.303 there is a great natural version of DAO by Ancestral Supplements, get the Kidney support. I have no affiliation with anything. Just trying to spread the good news.
When I was 60, my then physician was set to do a bone marrow biopsy because of a 2 day urine collection test that indicated I might have systemic mastocytosis. She ran the urine test again and the levels were more normal so she cancelled the biopsy. She retired and I have a new doctor. Now, 15 years later, I always wonder if I do have it. I sure have most of the symptoms.
Thank you! I would like to request more information concerning PEA and Mast Cell.
Noted! Yes, that's an interesting one
How to differentiate between MCAS AND FIBROMYALGIA
I was diagnosed with fibromyalgia anyway when I go see my doctor no matter what I have they blame everything on my fibromyalgia an right now I'm having so many health problems I can't beleive it but I do beleive what you're saying I just wish I didn't have so much pain
Well that’s too bad. There is a lot of overlap with this and fibromyalgia too. The main connection being the immune system. I hope you can get some answers.
I know I have it but Doc I can’t find a specialist in OC Calif that even knows about it. It’s unreal how doctors are so ignorant. I would be dead if I didn’t educate myself.
Dr. Sokol
Thank you so much this was very helpful
Your welcome
I asked a well known allergist about Mast Cell Syndrome and he blew me off. What kind of Dr should I be seeing??
Well that’s too bad. I think some doctors have not heard of it or bc it is challenging to diagnose and treat don’t want to deal with it. Try a functional medicine or naturopathic doctor. There are also many conventional gi doctors immunologists that hat treat it. You just have to ask first I think. It’s not one specialty that hat treats mast cell and histamine intolerance disorders. Good luck
A smarter allergist!!!!
Have pretty much all of that... but, very true in varying degrees, even from hour to hour. Triggered 24/7, however. Never a complete reprieve from symptoms. Sleep helps a lot; but sleep is often disrupted. Avoiding certain foods also helps. Three Rx meds, and many supplements; that are mast cell stabilizers. Avoiding sun, heat, and attempting to reduce stress (which is nearly impossible). *Also affects eyes! And, mouth; tongue and gums!* Basically system wide inflammation that affects everything... EVERYTHING!! (I so wish that I could get doctor to prescribe Hydroxychloroquin; which is what is prescribed for Lupus.)
I have had all these symptoms and more for 25 years. Back then, nobody talked about MCA. Instead you just got diagnosed with ME, and were then ignored by the medical profession. Oh, and most people with ME also have Pots, but that wasn't called that back then either. There are millions of women with ME. We have been ignored for 50 years.
I don’t doubt it and that is very unfortunate. And many are still being ignored but progress is being made. Good luck 👍
Thank you for excellent video I am really suffering with Hives past year ..nothing recommended to get to cause.. just using antihistamines and cortisone..become chronic and debilitating ..in all ways 😢thank you 😊
Your welcome, It can be tricky to find the cause sometimes. Good luck!
Dr Ben Lynch, Seeking Health might be a good place for you to find solutions.
Wow… I have all the symptoms plus I am diagnosed with scare, derma, pulmonary hypertension, restrictive, cardiomyopathy, interstitial disease… But I have always had extreme allergies, rashes, hives, and the brain fog, the chronic fatigue and even neurological symptoms that come along with some of these "allergies" I even had immune thrombocytopenia both times i gave birth, and in times of medical trauma it happens too... hmmmm. Do you think my rheumatologist should explore this?
Well it is hard to say knowing so little about you. Yet I think looking at disease processes in a functional way is a good model for improving your health when you have chronic illnesses. If they are willing to it won’t hurt
@@swintegrative I live in San Antonio Texas and honestly the physicians don't work well together here. Do you have a resource to find a good functional medicine center? They are referring me to Boston in November for Rheumatic Cardiovascular Team first the restrictive Cardiomyopathy. PH specialist is pointing at cardiology and cardiology saying we think its the PH" 🤷♀️ meanwhile i am having syncope episodes
I don't have any specific place but you might try this website www.ifm.org/find-a-practitioner/
I have this. It's awful. Alcohol makes it worse and I'm super sensitive to it now
Yeah would expect alcohol to make MCAS worst for sure
@swintegrative GPS and drs don't know much about it. Said its chronic Idiopathic spontaeneous urticaria but I know it's much more as when I'm not on xolair I suffer joint pain, Ibs like symptoms, chest pain etc the hives are bad but that's just one symptom
I am afraid of losing my best friend to Mast cell. It started after she was in a car accident.
Thank you, may I ask my daughter is allergic to everything food, meds, environmental and much more. If she’s eating some of the foods she’s allergic to…not the deadly ones but still fairly high. Anyway she could develop this from that too correct? Most of these symptoms are her to a T. Thank you for the information. You’re a blessing
Check out my video on mast cell activation vs histamine intolerance, similar symptoms but different cause. Good luck
I have pots and autoimmune gastritis causing anemia, I have allergies to lots of things like dust mites and fur and pollen, I get urticaria itchy watery eyes and allergy asthma and constant blocked nose and red cheeks, I get very bad pressure headaches and indigestion and bloating. I have joint pain and chronic fatigue the list goes on would it be worth going to the drs to see if I have MCAS?
Yes but the problem is it is not easy to diagnose and many doctors do know about it. All that said yes, it is worth looking into.
This is me too plus hypermobile EDS and plus more conditions and can't find a Dr. Any Drs in San Diego area?
Can this cause body odor? & Who is the best doctor to diagnose mass activation syndrome?
No on body odor, any doctor w experience but the typical would be allergist, immunologists functional medicine, or naturopathic doctor. Any of these categories but not all have experience with it so could be dead end.
I’m trying to watch every video out there to determine what my son has. He has chronic mucus, blows his nose constantly, spits phlegm up non stop. Yes we’ve been to allergy Dr, CT scan, bloodwork, homeopath, you name it. Still can’t figure it out. We removed gluten, dairy, corn etc from diet. I was wondering if this was it but doesn’t seem so.
Well keep searching.
What if
Mast cell activation syndrome person has hypermobility???
Is it called......
Ehlers-Danlos syndrome ??
I have had a couple random attacks that were pretty text-book mast cell activation. The first I thought was scombroid poisoning (first thing that came up when I googled the symptoms), but I hadn’t ate anything that would cause that. The second was much worse. Not only the diarrhea and vomiting, but also profuse sweating, itching and tingling sensations all over, racing heart, extremely dizzy, feeling out of breath for no reason, unable to stand, and finally passing out. My wife pointed out my skin was a weird brownish red and I was itching everywhere afterwards. I didn’t feel completely better until I took a benadryl. The whole thing lasted maybe 2 hours tops.
I saw an allergist and ruled out all kinds of allergies. No definite answer. I have been taking cetirizine daily for over a year, but it has unfortunately caused other problems. I haven’t had an attack since but I’m having a hard time with the side effects of taking antihistamine all the time. I am constantly sleepy during the day, can’t sleep at night, and always constipated. I really need to find another way to treat whatever this is, but I am very afraid of having another attack. I do not think my doctors truly appreciate how scary this is.
I had a bunch of blood and urine work any everything looked normal. The next step was a bone biopsy, but I never got the referral as I was worried about the procedure and just let it go.
Even before these attacks I have had treatment resistant depression all my life. My depression feels different from the norm as it can come and go quickly for no reason and I also experience a lot of weird physical sensations like being very lightheaded or feeling a weird pressure behind my eyes. Its easy to for people to think these are just normal “psychosomatic” symptoms, but that feels dismissive to me. I really believe I am feeling sone kind of neuro-inflammatory symptoms that are not just normal depression. I also had mild eczema before I went on antihistamines, but I never thought it was connected. Now I am suspicious all of these things are somehow connected. Its just hard to convince doctors.
I wouldn’t be surprised if they were connected. Thanks for sharing
@@swintegrativeYes. Its frustrating that acute attacks are infrequent. Its not that I ever want it to become more frequent, but its so hard to test. The second attack really felt like I was going to die. I had never been so weak I couldn’t stand up or walk. I had locked the bathroom door and didn’t have my phone with me. My wife could get to me until I crawled from the toilet to the door. When I reached up to open the door is when I passed out and hit my head against the door. I probably should have called 911 but I felt better after I passed out. I still had the itching but I was feeling like my blood pressure was returning to normal. It must have been so low with how dizzy and uncomfortable I felt. I just took a benadryl, got all my sweaty clothes off, and laid in bed until the next morning.
@@marshallsweatherhiking1820 my daughter has episodes similar to yours. Very scary! 911 is of no help. Neither are emergency room visits. They don’t know what to do.
I went to several specialists for my different and strange symptoms. No one was able to help me, they just wanted to prescribe depression meds.
I started doing some research and found the Mast Cell 360 website and learned a lot. I joined a FB group MCAS and one of the admins does consulting and told me that I probably have Oxalates and Salicylates issues as well.
So long story short, after following a low-oxalate diet and doing Epson salts footbath my anxiety, low blood pressure and pains starting to go away.
The Web Mast Cell 360 can give you a lot of information.
Its all so frightening!! @@marshallsweatherhiking1820
I have eoe, headaches, wheezing, Shortness of breath, trouble remembering things, depression, anxiety, chronic pain in my muscles, arthritis in my back, numbness/tingling sometimes to my face and hands, I snore, I get different looking rashes - a mix of rashes from whelps, hive looking bumps, these white circle things on my palms and feet that are very painful and incredibly itchy, very rare, but sometimes I get a heart palpitations. My age is 35 if that matters
Does this sound like this or something else? Any help is greatly appreciated.
Omg reading this, I finally feel like I can be apart of a community of people who UNDERSTAND! Like I finally don’t feel alone because other people are experiencing things like this too!! I’m 27, and literally experiencing the exact same things you’re describing, my doctors look at me like i’m an idiot.
@@FlawlesslyFee I have a twin sister that is going through almost the exact same thing. It can be hard going to so many different kinds of doctors and still not getting an answer as to what is going on.
Keep hanging in there girl. Keeping you in prayers. I hope they find out what is going on and help you to feel better.
What helps me is omad dieet, low histamine food, no sugar or processed food.
My sinussus were like i have never known in my life and depression and tiredness left. Felt great after a day or two.
Got a uge relapse when i ate pineapple and a cookie.
Nervous, swollen eyebags and face and so tired.
Also quercitine, now starting with tulsi and milk thistle as blocker.
Hope it will work.
New to this all just 1.5 week in due to long covid diagnose that wrecked everything.
But it helps allready soooo much, allergies were allways a thing for me and some parts are better allready than before i got ill.
I will find the answer.
Because i miss cheese and fuet.
A lot... 😂😂😂
Can it cause nerve damage
I think there's one guy at Mayo clinic that may run a bone marrow test, but you have to be having a current flare up for it to test positive... where is everyone else getting diagnosed? I'm currently being my own guinea pig and throwing high doses of quercetin, NAC, bromelain, rutin, resveratrol, vitamin C, HistDAO, and a supplement called Antronex at this problem and it seems to be working so far. Sam-e helps considerably with the brain fog. NAC, acetyl-l-carnitine, and an adrenal complex are helping with the fatigue. Gallbladder enzymes and the quercetin are helping with the incessant, watery stools. Haven't found anything that works for the rashes, though. I use beta methasone cream right before I see my dermatologist so she stops trying to prescribe more harmful medications (like oral steroids, which make me both sui and homicidal). It sucks, praying for everyone here watching this and going through it.
Can't find a doctor willing to look at the sMptoms as a whole. They all just want to look at one at the time 😢😢
naturopathic doctors and functional medicine doctors are trained to look at the connection between systems so this might be a good place to look when trying o find a doctor for mast cell activation. These are not the only doctors that treat it but they at least will have some understanding of it.
@@swintegrativeThank you so very much 🙏 💫
My family has this, and it became active after getting the vaccines. Two family members had it and not taken the vaccines. Is this something that can be genetic? I have a lot of sensitivities, but I’m not as bad as my other family who are diagnosed with it. We all have MTHFR, not sure if that matters, but interesting nonetheless.
There are specific genetics around histamine intolerance and some overlap with MTHFR and methylation. Usually there is more going on than just these genetics though. Ultimately it is a problem with the immune cells.
Shedding is possible, no good studies on this yet.
What kind of Dr should i go to to have the right tests done? I have been dealing with many of this symptoms for years. I'm finally realizing there's something going on. I have other symptoms not mentioned here as well.
Allergy and immunology.
Have you heard of the triad between MCAS, Ehlers Danlos, and POTs? The video suggested it is a combination of medication and retraining the nervous system. It's not exactly my diagnosis but in the same family and the symptoms fit, what type of doctor treats this?
They all can be related to immune issues/ mast cell/ histamine.
How would I talk to my doctor about wanting to look into this? I started working out again about a week ago and suddenly started developing hives about a day later, I’ve since begun to understand that the hives are dermatographia (tested at home only by gently scratching my skin in random places). I’ve also been suffering pots like symptoms since I was very young, but they’ve seemed to get worse over the past two years (I’m 25).
Unfortunately doctors don’t even know it is a thing. Likely you will have to see a functional medicine doctor or naturopathic doctor but not all of these doctors have experience with it either. There are conventional medicine doctors that treat it too usually allergist or immunologist. Sorry it is not easier good luck!
I've had all.these though found out why I have Asperger's heds
Helpful!
Glad it was helpful!
Yes please do anther video
Will do
You mentioned joint problems at the beginning, how would that present with this syndrome? I’ve been chasing doctors for a decade and gotten some answers but not many. So far I’ve been diagnosed with oesophageal dismotility and gastroparesis. I also have joint problems that are still being investigated along with migraines, brain fog, suspected endometriosis and a few others. My skin is very sensitive and it takes a lot for me to bruise. Don’t know if any of this is relevant but you said it can effect all sorts of systems in the body 🤷🏻♀️
More coming on this soon but it can vary a lot and there is overlap with EDS Ehlers danlos syndrome
Look into thiamine b1 deficiency and other b vitamins in general and magnesium deficiency. My knees used to burn chronically and had a lot of other nerve and muscle issues. These two things helped tremendously.
OMG, you are describing me. I hate brainfog. It really steals who you are and have known to be.
Yes I hear that
Question about MCAS and degranulation of mediators at night causing flare ups and sleep disruption?
I have most of these symptoms. I have fibromyalgia so could just be that.
Yes it could be but could also be the other way around mast cell activation rather than fibromyalgia. Mast cell is just a model used for more effective treatment and resolution of symptoms and health problems
how is MCAS related to Histamine Intolerance? thanks for the intro - interested in testing and treatment.
This video is on mast cell vs histamine intolerance so it should give you some ideas. I do have some coming on treatment of high histamine soon. ruclips.net/video/vqFmdK0rXCM/видео.html
Can overactive mast cells cause chronic pelvic and bladder pain? I have CIRS so my innate immune system responds to invaders via mast cells, inflammation, etc. but my adaptive immune system doesn’t get the message. So, I’m in a constant state of alarm trying to activate the adaptive immune system. This means I’m in a cycle of constant inflammatory immune response. I have severe undiagnosed pelvic pain. It feels like massive inflammation and burning. Like hot coals burning me from the inside out. Hysterectomy did not help. It’s in the low pelvic and supra pubic area. I feel it along both psoas muscle’s as well.
MCAS is associated with interstitial cystitis.
I had all these symptoms yesterday what lab to you draw to confirm this.
I have a video on this coming
Is edema another symptom?
Not as common
I didn't think any diagnostic tests helped to dx MCAS??
It’s true that it can be difficult to diagnose but there are standard diagnostics tests that can be done but false negatives are common. When the test are positive it can be helpful to have that clarity.
no it sounds like you're talking about MCAD not MCAS?
This just further
try-take
spell checker strikes again. t r y p t a s e
Thank you .. I diagnosed myself last year and seems I’m right by your symptom check! My Drs say nothing but say talks an allergy med which I can’t as I react to most meds! I can take half a loratadine.. xyzal was great for a year but I react to it now, it literally makes me into a zombie and hard to wake up all day! If you might say more on how to treat MCAS! So fed up of not getting help from doctors! I take mostly supplements but even those I have to be careful with! Great video thank you!
Yes good idea working on a video for this.
My blood pressure is up... I've also been diagnosed with Mixed Connective Tissue Disease. Struggling to breathe right now. I had a bout of sinusitis after eating apples of all things 😢😢😢
How do you get diagnosed? What kind of doctor is best to diagnose? What are the tests? I had intestine biopsies done while having colonoscopy and they ere negative. I THOUGHT that eliminated Mast Cell. Evidently not.
This is me hypermobile rashes all the time I react almost everything I had mold exposure, which activated my limes disease, and Epstein-Barr palms of my hands are red and itchy. All over all the time my scalp is the worst ice burning itch. All I ever wanted to be was taken seriously too they think you’re crazy and you’re not and it’s a living hell fix your heart rate your autonomic nervous system affect you from the top of your head to your toenails
Thanks for sharing
7 minute video for 30 seconds worth of information...
My Specialist advised the vaccine has activated my Mast Cells, I can't take any pain killers anymore. I'm going for my triple double booster now lol
I hope you are kidding!
😊😊
I had similar experience after Vaccinations
I have cold uticaria. Is that a form of MCAS?
Not sure. There is also MCA
urticaria is symptom
Maybe it could be that you live too close to lots of wind turbines, or that you’re watching your phone too much. .
Technically, both can set off MCAD. Electromagnetic fields trigger it in some. Obviously wind turbines would with the dust kicked up. Yay allergies.
Pots Ed’s and micas. It’s just hard to find doctors my network around me said they no longer take mcas patients per new protocols. What the heck!? I’m at a loss in the system. I need help.
Csn mast cell activation happen when your IGm is low but not IGe?
With immunoglobulin deficiency you are susceptible to infections which can actually activate mast cells
@@swintegrative thank you! Since I had COVID in 2022 I have been having many of the symptoms of MCAS along with a progressive issue of inflammation that caused perivascular dermatitis, & even working with several doctors we haven't nailed down a cause. I have been having many histamine reactions and the only things that have done anything to help are taking huge antihistamine doses and doing meditative rope bondage that causes the swelling to go down afterward and we think that response is tied to cortisol release, but we're not sure. It's been scary with the reactions and progressive swelling, etc. thanks!
Sorry to hear that. Sounds like you have a lot of tricky things happening in your body and with COVID can definitely activate mast cells. good luck to you
Thank you! @@swintegrative
Does MCAS usually have a root cause?
Like for example SIBO, leaky gut, a liver problem, etc?
Is MCAS curable?
Pathogens (virus, bacteria, fungal, parasites) are a common cause. More videos on this coming.
It’s not curable
Have been battling for 54 years, since a hospitalized case of Mononucleosis at six years old. It has been a life long struggle for legitimacy with health care providers to this day. Many diagnosed issues, but minimal assistance. I will continue to treat the worst symptoms, eliminate histamine and stress (in whatever form), and do my own research. It is the only hope I have. Was just sent to a thyroid specialist, who asked why I was there. She said I have an immune issue, not a thyroid issue, as the immune system is attacking my thyroid and intestinal systems. She said I needed an Immunologist, which is what I told the General Practitioner four months ago! She is supposed to tell the GP for me. Hope is all I have that the GP cooperates.
Hi
Do eosinophil levels have anything to do with mast cell activation syndrome, like in allergic reactions ?
I have symptoms what I believe to be mast cell activation syndrome, but my eosinophil levels are consistently only 0.01.
I was recently stung by wasps, but had very little to no reaction. Would someone with mcas react to insect stings?
eosinophils are not specific to Mast cell activation. they can be high but if not it does not rule it out.
Hi! I'm pretty sure I suffer from this since almost 3 years back. I got acutelly ill after trying propanolol for the first time for slightly high heart rate and my symptoms have persisted ever since except the most severe ones. I was 37 years old at the time. My symptoms is vision changes like seeing halos around light sources, thousands of beams from car lights at night, high distolic blood pressure, palpitations I can feel through out the body. A big spot on the nose filled with telangiektasia(?), hip and lower back pain and pretty severe erectile dysfunction.
When I first got ill my distolic BP went up to 125. I got vertigo and ended up at the emergency. They thought it was a panic attack and sent me home but the issues got worse and I went back. They then prescribed metoprolol due to the high heart rate. And after taking that my penis got all numb, I got a severe back pain, numbness in the inner ties, the anus, lost sfinkter control and went back to the emergency. But this was during covid/delta and I never got any real help. They told me to go to my regular doctor instead of the emegency. Eventually they let me have a MRI a few months later but that didn't reveal anything. I later got in contact with a cardiologist like maybe almost 2 years later of suffering palpitations every day. She prescribed ivabradine instead. And this actually helped to get the heart rate in check. Buuut when I had not eaten I had regular heart rate, so instead ivabradine took down my heart rate too far. Also ivabradine only slowed down the heart and didnt't help with the palpiations. The heart beats could still be felt throughout the body. So it wasn't until I eventually was recommended looking into MCAS by someone on facebook and so I did. And after excluding all histamin rich foods for a month I eventually stopped having these palpiations. I have mentioned this to my doctor and told her what histamines I should have. So she prescribed them even though I could get the over the counter. But she havent sent me to a hemotolagist or anything? And I still have issues if I eat something containing histamine. Especially if I don't take my anti histamines. And anti histamins are bad for erectile function. Soo I don't know what to do now really.
If I forget to take my anti histamines I get a heart rate of 120-130 sitting up and around 100-110 lying down. But other than the high heart rate the palpitations are severe and I get super fatigued for about 5 hours after a meal. I can't live like this. I can't work. I have to live with my parents and are now 39 years old.
I did have a ME/CFS diagnosis. But I'm starting to believe it may have been MCAS this whole time.
So sorry to hear of your current condition. I can relate on some level and just beginning my journey into MCAST. I hope I can get a wise and knowledgeable doctor as the last one was useless. Best Wishes!
ok cool. thanks.
now what????
some guidance please
More videos coming
I have a loved one who thinks she has this and is on the end of her rope. Is there a way to diagnose this for sure? Are there any treatment options that could help and give her hope? I’m afraid she might not be able to make it much longer. Any information would be greatly appreciated.
Probably just needs to see a doctor that can diagnose and treat this. You can look for functional medicine, markers, naturopathic, doctors, immunologist/allergist but you have to ask them if they actually treat this condition.
Hi dr can msac cause weight loss and muscle loss ive not been well for 2 years and feel very fatigued
Not directly but things that cause it like infections