I think the problem with many PCPs is that they blame the symptoms of MCAS on anxiety and they try to send you to a shrink, hoping all of the food allergies + scent allergies and the other weird symptoms will go away.
Yep, that’s what’s happening to my daughter! Docs are giving the depression and anxiety meds 🤦♀️ and keep telling us to eat whatever we want but the moment she eats gluten or sugar she is almost anaphylactic ☹️
I’m really allergic. I found out because my firstborn son is highly allergic to eggs and peanuts. It’s sad how people don’t take allergies seriously. Thinking it’s just preference diet, or a little bit will be ok or be desensitising the allergy somehow. Even the medics questioned me “why’d you think it is allergies” when I wanted to get my Son tested.
You nailed it there and unfortunately like a fellow woman we do unfortunately get treated like that . But girl things are changing just you wait and see . Just got to make sure you are heard and not disregarded in any way , you know your body after all you are the only one in the world who can describe what’s going on inside because nobody else can . Unfortunately Gp’s don’t understand it , Allergist do and probably optician’s to especially if your allergic to the sun like me now that makes me really poorly .
@@liaevans9776shocking the doctors should be ashamed of themselves. Shocking beyond belief. Sadly it really doesn’t surprised me . I’ve worked on front line for 30 years now and I’ve seen this way to much . I have a go at them now , I had some serious adverse reactions to statins and Sertraline recently I literally thought I was going to die . They need to listen because it can be dangerous. All I can say is get knowledge and know more then them and don’t ever give up even if you become a nuisance. A doctor at a hospital told me to message them every day if I have to so I do and I make sure I get confirmation all the time , get access to your notes . Become so informed . Don’t let them fob you of . My daughter has a gluten allergy and they disregarded her constantly now I’m taking them to court because they don’t know what they are talking about .
Boy you got that right! I've had to self diagnose histamine intolerance and mcas plus porphyria and other massive food intolerances. Nobody can believe it because as many doctors said, "It's rare. I was told I'd never see it so you can't have it." Apparently rare means it doesn't exist! Which means I must be a character in a scifi novel. When I had long covid I immediately knew it was a mcas because I ate a very small amount of histamine then woke up unable to breathe. Took an expectorant then coughed it all out and spent the remainder of covid able to breathe. I tried telling people to go on a zero histamine diet but no one listened. Then I began looking for a doctor to figure it out. Finally got into a long covid program in 2023. They provided prednisone and I found other supplements and montelucast. In the mean time I had a low blood pressure event along with a sulfation problem where I collapsed then blacked out. A nurse came to my rescue. I told the hematologist the problem was low bp and a sulfation problem. He decided I didn't eat enough prior to having a pint of blood removed which was totally erroneous. I was transported to the ER where they listened to me and loaded me up with sodium. Later I left him a few notes. One said that I had purchased a 23&me and had run the data thru a methylation analyzer and that is why I knew I had a sulfur problem (plus it was causing breathing problems). So he finally realized I wasn't an idiot. Later I told him I had proof I had a genetic mcas problem because I was admitted into the long covid clinic. I had to point out that the clinic addressed mcas. He started laughing because he believed I was telling a joke. I said no it's not a joke and I explained to him that if people with covid died from cytokine storm why wouldn't it be a mcas? He couldn't refute that one. But yeah, most doctors don't even know covid is related with mcas and apparently they don't want to be responsible for any part of it. I've gotten far better responses from nurses and nurse practioners. But it's great to see doctors here who apparently realize that a large number of people need this info because we are the main researchers and instigators of treatment. Even now I'm the lone source of information when I go to both my primary and the long covid clinic where all the other patients are going back and forth on steroids and antibiotics. They aren't doing anything else and they don't know to do or try anything else. But that's Florida for you. I live on the Space Coast where the #1 priority originally was safety. Today's program is accompanied with the words, "people will die," and the rush to colonize Mars. No doubt people will die. Meanwhile I want to offer Special Recognition to those of you who have had to do this work yourselves and to the doctors who ignored fear and thought duty was more important. MEANWHILE: I am certain that remedies will be forth coming due to the long years of research that are now coming to bloom and also because we have ended the last cycle of time (the End Time) and have just started a new one referred to as the golden era. Both historical and mythological data align to indicate that this is a period associated with contact with the creator, evolutionary leaps and elimination of illness. We also return to a matriarchy which will result in the elimination of war and taking care of the earth and all it's inhabitants because women are the ones who will do whatever it takes. Even now we have more women than ever running for office this next election. We should see a huge change in eliminating arrogant, selfish and angry attitudes by years end. I know this because I have spent the last 14 years researching the end time. Good things are coming! Have a nice day!
My son was a paramedic. He died after being bit or stung on the foot while giving CPR on a young lady. They got her back and loaded her in the ambulance that transported her to the hospital. He stayed behind to help clean up the scene. Within 10 minutes he died in her front yard. Anaphylaxis. He was sooooo swollen. Got the autopsy back and they said the anaphylaxis was SECONDARY to Mastocytosis !!!! I never even knew he had it. But after studying this, after the fact …. He most certainly had almost every symptom. It all makes sense now. It breaks my heart. He suffered so much. #Forever38
I'm so sorry. I can't imagine your grief. There's no words. There's very little awareness about mast cell diseases, even among doctors/providers. Seems like a wonderful person to help others in emergencies.
I wish more doctors were like this guy. Unfortunately I learned the hard way how incompetent, arrogant, unempathetic most are. They assume the most common circumstance rather than getting to the root of the problem. Above all they dont seem to care.
After I explained MCAS to my pulmonologist, he admitted a big part of the problem is that Drs. aren't up to date on the info that's out there and either don't want to admit it or don't care to learn. Rather than admitting their lack of knowledge they'll pass you off to another doctor. Which is what I find happens most often.
I started getting severe asthma exacerbation symptoms 6 months ago outta nowhere. Had allergic rhinitis asthma n nasal polyps for years but I feel since Covid my respiratory system hasn’t been the same. Lung dr thought I had respiratory bronchiolitis from previous smoking so put me on steroids which helped but then I got bad gut issues: constipation bloating pain after eating etc… so I overdosed on fermented foods thinking it would help my gut … then boom a month later I’m Allergic to everything food wise. Extreme asthma. Now seeing a functional Dr who’s starting with sibo/leaky gut tests. I’m sure I have this mcas disease. Life sucks right now, can’t even exercise without getting asthma. 🙄
@@melriini8280 If you stop eating the foods that are causing it, the asthma should go away. For me personally it was vegetables. Specifically brocollini, asparagus, zucchini. I had to stop eating like 99% of foods I was previously eating as I was all of a sudden reacting to everything. It does get a lot better with time though, once you work out what your triggers are.
We need more people like him. He charged 6k for initial consult and a follow up (not including tests) when I checked a couple years ago. But he does a deep dive into MCAS and your history which takes time. He has a colleague that charges about 1/2 that to get started.
I had similarities happen to me 2 years ago after 1 year of chronic work stress. Doctors couldn't figure out what was wrong. I had to do my own research. I decided to go on a whole foods, nutrients dense anti-inflammatory diet to get rid of the inflammation and give my body what it needed to fix itself. I also focused on foods that supported my nervous system. I took a few months off work and eliminated all stress. This saved my life.
@hecknogmo3720 I didn't take medications. I chose the holistic route. Just google anti-inflammatory foods. Then, google Foods for your nervous system. For the nervous system, I focused on B complex vitamins, magnesium rich foods, healthy fats and vitamin D. I stayed in tune with how I felt everyday to see how my body reacted to what I ate. Keeping the inflammation down every day is key to healing and feeling better.
Today I am diagnosed with some form of MCAS and Mastocytosis. I had to sell my business, haven't worked, and have lived as the "Man in the Bubble" ever since. It all started 12 years ago with a stick of red licorice and a body full of hives. My disease quickly progressed to be diagnosed as histamine intolerant within a month. Then six months later to be allergic to sulphites (sulfites). This would be deemed my "trigger" a few months later. All sulphites had to be eliminated from my diet including any high histamine products such as tomatoes. Today I live on fresh meat of any kind and cruciferous vegetables such as broccoli, cauliflower, green lettuce. I do cheat but not often. Now, here is the reason I'm posting. After 10-years of lockdown/isolation I now feel great! Combined with the nutritional changes I've made I then found a drug that has changed my life. It's called Sodium Cromoglycate (Nalcrom) and I take it twice a day in conjunction with Cetirizine. My dietary changes and the combination of drugs has literally changed my life. I hope this information helps someone else.
OMgoodness, Warren, I did the same, with fresh meat, and cabbage. (Usually ColeSlaw) I feel 98% better, and lost a bunch of weight, as a side effect. Hydroxyzine Hcl (Atarax) and Lactaid pill, (just in case...Still looking for answers for the horrible bone pain and muscle spasms. Magnesium helps, but not enough. Thanks
@@RisqianaTrisnani Hello, I am not familiar with the drug Hystrin. I am also very tired and sleepy most days and take a drug called Modafinil which is designed for Narcolepsy. I take 2 each 100mg tablets of Modafinil each morning and this helps to stay awake for up to. Also, when the sleeps are taking hold, I go for a 30minute nap and force myself to get up after. You have to fight this sleep side effect or it will rule your life. Before I got control of my sleep I would sleep up to 72 hours without waking. 👋😎 Big Hugs from the Canadian Rockies,
This is an absolutely horrible existence. I am just learning of this condition after my primary care was not aware of mast cell disease and prescribed prednisone. What a waste of time and needless suffering due to the ignorance of doctors on how to treat this disabling affliction.
@@staceypollack6526 Yeah you never want to take that as a pill because antibiotics create more gut damage resulting in cilia damage in the gut. Healthy cilia create DAO which dispatches the histamines. You want to do everything you can to fix the gut.
These are some of the top experts: Dr. Lawrence Afrin, Dr. Tania Dempsey, Dr. Anne Maitland, and Dr. Theoharis C. Theoharides. There are more doctors as well. I was diagnosed by Dr. Anne Maitland.
Here's my story... I'm about 90% healed from MCAS, that had me full blown chronic iopathic urticaria daily and only was able to eat 5 things. Took about 1 month to heal myself. I'm up to 2 adult scoops of the D-Lactate Free Probiotics powder. I started out slow because I was that ill. I cured myself, y'all! 52 years of not getting diagnosed correctly and doctors trying to give me pharmaceuticals to put a band-aid on the problem. I studied for 4 years to try to heal myself. I was sick and tired of my eyes being swollen shut and not being able to drink or eat anything. Heal your gut and quit this insanity!
@sharlene4mylife I found this man. He is not a doctor, but he is more knowledgeable than any doctor I've seen in 52 years! This is from his website.... Harry Bronozian CUSTOM PROBIOTICS Inc, established in 1999, was developed by Harry Bronozian, a chemist and chemical engineer, who personally suffered from Helicobacter Pylori, the bacteria that causes ulcers. After years of trying different probiotic supplements, Mr. Bronozian formulated his own multi-strain high-potency probiotic formula. Within a few months of using his own custom probiotic supplement, he discovered that the H. Pylori was under control. After eight months of use, an endoscopy and biopsy concluded that Mr. Bronozian had eliminated H. Pylori from his system. I called him and told him my symptoms, and he recommended the D-Lactate Free Probiotics powder. His business is at 2947 Honolulu Ave, Glendale, California. I really believe he can help! I'm back to eating and drinking most things!!! I wish you all healing and good health!!!
@janetnorris2255 I take D-Lactate Free Probiotics. It has a blend of 4 different strains for histamine intolerance. Look up Custom Probiotics. They're based in Glendale, California. I wish you well.
oh my goodness, spontaenous idiopathic chronic urticaria was my diagnosis until i saw an FM Doctor who diagnosed with MCAS and i can hands down recommend watching this video: ua-cam.com/video/n4h_gQzcCKc/v-deo.html and checking out Mast Cell Matters podcast. I spent 12 years trying to heal myself, ending up on the FM route and whilst i am relatively symptom free nowadays with the occasional attack (mine is stress, pressure and temperatiure and alcohol as well as white bread and other things triggers mine - a long route of elimination is hard when it can be triggered by temperature!), its nice to be able to actually look at the reason and how to heal. circadian health (getting out in morning for UVA/UVB light) Blocking blue light (viva rays), red light supplementation to boost mitochrondrial function (EMR-Tek panel) have worked for me. I am looking into toxaprevent and quercetin following recommendations from an FM pathway not used those yet though!
@@laurasmith1831 Amazing 1. Did it cause side effects in the beginning? 2. How much does it help? 3. What dose and how often do you take it? 4. What brand do you use?
I wonder if more attention being paid to vagus nerve suppression from compression as often seen around C1/C2 after a trauma, thereby reducing the regulation process of the parasympathetic nervous system could not be a key to understanding these overactive sympathetic nervous system responses, this is not usually ever checked in my experience, but it seems like something we should at least consider to my layman’s thinking.
I think the common denominator in all chronic illness is immune dysfunction. Most likely caused by the assault on our systems by artificial and toxic ingredients in our food, personal care products and environment
I wonder if it has to do with vaccines. I have tried to isolate contributing ingredients unsuccessfully. MSG, mixed spices, mushrooms, bacterial infections, flatulence.....my doctor put a label on it 'uticaria' and shakes her head. I need a cure or an excellent treatment.
I agree and trapped negative emotions contribute as well as subluxation-facia etc. Vitamins, herbs, and minerals, sunlight, light exercise, and grounding help me to wind down. Understanding old childhood contexts, forgiveness, and looking to the Ultimat Ideal-prayer-meditation streching breathing exercises have helped a lot too.
🙆♀️ I have just yesterday been diagnosed with MCAS. This has been an over 10 years of suffering on off. This doctor is right...maybe even many functional doctors don't necessarily look for MCAS. Biopsies, I have never done....🙆♀️🙆♀️
Low hiistamiiine diet is the first line of defense for me which clued me into the mast cell problem. I am on my own here in small town Alberta so, these videos are a wonderful assist. I have long covid and I believe it is driven by mast cell activation. My Dr. does not believe nor understand that possibility. I take things that boost DAO and I have less symptoms but sometimes harsh reactivation of symptoms. Polyethyleneglycol is a big trigger for me...it is in many drugs and foods. I walk a fine line and eat a very limited diet, which also causes a lot of eye rolling from friends and family. Oh well. I do what I can for me and maybe can prevent the usual three visits a year to emergency with brutal gastric pain, vomitting and the other thing.
i think if we had any health professionals brave enough to look at the PEG issue and where we are exposed to it consistently in immune stimulation we might make bigger breakthroughs in the development of dodgy mast cells and symptoms and teh complexities!! wonder what we do that stimulates the immune system before it has had a chance to develop?? hmmm
Dr Afrin is my hero. I have Systemic Mastocytosis. He helped my PA Allergist with questions. I can't imagine someone being both so very brilliant and so very humble at the same time but their he is. Seriously. My hero. And yes I'm a unicorn. Doctors lose their minds when they find out I have SM. I feel like a dog and pony show as they schedule "Fellows" to meet with me all the time. But I'm glad to help spread the word by answering their questions. I cant get a straight answer on whether having Systemic Mastocytosis also often include MCAS. It certainly feels that is the case. I am currently on a trial for bluzaclastinub and its been INCREDIBLE. not perfect yet but I'm sure dosing adjustments would make it even more amazing.
amazing you have access to this new drug, important question since you have been on Bezuclastinib, have your tiggers and reactions to triggers (mast cell activation) subsided ? Many of the older KIT inhibitor don't work that well on MC activation.@@RunningWithSauce
An animal foods based diet is key. Plant toxins such as oxalic acid, phytic acid, solanine, psoralen, lectins, goitrogens, etc., all contribute to immune dysfunction. Modern humans suffer from the consequences of poor nutrition, namely metabolic disease (insulin resistance) as the root cause.
Doctors were no help. I did my own research. Fixed my symptoms with an anti-inflammatory diet and stress elimination. I asked my last doctor what could have caused all those symptoms. He dismissed it and said its irrelevant now. What?! He just missed the opportunity to possibly help so many other patients if what I did to help myself could help them. I will never stay with a doctor that dismisses my legitimate concerns again. I will continue to educate myself on health so I can be my own advocate.
I am curious to know if Dr. Afrin is looking at mold & mycotoxins exposures in patients? Mymycolab has an excellent blood test that determines these and ones that are causing the body to react.
Definitely can be one trigger of MCAS. Also heavy metals. Mercury kicked off mine - then mold showed up later to kick my butt again! Fun stuff, those nightmare toxins.
My daughter is in the medical field and TWO YEARS AGO, right after her 3rd shot, (1st booster), she started becoming hyper sensitive to her PPE, especially the vinyl gloves. She is celiac (auto-immune) and was always very careful. Her inflammation skyrocketed, with each contact (an other things she found out later) blistering rash, rapid heart beat, etc. She was pulled out of that environment and was able to work from home while she went from doctor to allergist to nutritionist, etc. It was found she had super high amounts of tellurium in her system???? She was found to have become allergic to ALL manmade plastics and rubbers... silicon, vinyl, latex, etc which is used on almost everything To get the hyper inflation under control, she removed all kinds of trigger and inflation causing foods. One year ago, Finally finding someone that took the time to work with her, it was determined she is hyper sensitive to CORN PROTEIN. Guess what corn protein is in and is made into????? EVERYTHING. Of course GMO and exposed to glyphosate. Poor thing has lost 40+ pounds on her strict diet only to more recently having become sensitive to POLYESTER !!!! so now she had to to warddrobe her clothes, bedding furniture, stuffed animals etc! Apparently, polyester has been reformulated in the last few years and includes CORN BYPRODUCTS!!!!! This has been a nightmare for her. I wonder how many others have been thrust into this hyper-inflamation by the spike protein concentration in the shots.
I’m sorry your daughter has to go through this. Glysophate is the problem and so are the preservatives put in food. Most are soy or corn based. Soy is in EVERYTHING. Just check the labels. Too much of one thing is not healthy.
Oh my God! That is just too awful!! I am loss of words to your daughter’s unfortunate situation cause by the ever evil spike protein shot! 😢 Her life really changed and I am sure it affects her well being 24/7!! I cannot imagine what each day is like to be living this way! I hope you can do research to find ways for relief for her and if there is a chance to see a functional doctor to help detox the mrna spike protein out of her system bit by bit. Blessings…
Please keep us updated. I’m 21 years old. I was recently diagnosed with MCAS (but carcinoid syndrome, etc, still in the differential. I need to undergo testing). I had the Johnson and Johnson shot in 2021. After getting reinfected with Covid 15ish weeks ago, my body shut down. I been at ERs over 20 times in 3 months. Was hospitalized for 4 days. I started having allergic reactions to many different medications, and the only thing that seems to help (for about 2 hours) are antihistamines. I’m going to see an allergist soon. I’ll share updates
I’d be one of those unfortunate souls 🙋♀️ I’m a college student and spent the entire first half of last semester in constant anaphylaxis. So extremely hard to explain to my professors, especially without a diagnosis at the time. I had an epi pen bc this started happening over the summer but I never used it bc I didn’t see the point. I only have two and I was in that state 24/7 for 6 weeks. All I could do was bed rest and antihistamines. Allergist was baffled that I wasn’t using it, but thankfully I never stopped breathing. It was always a tight rope to walk. Doctors told me for years my symptoms were due to anxiety :)
@@kileyfoxhall3041 I didn’t believe the doctors either when my doc said it’s related to my anxiety. Then just to try I started taking anti anxiety meds. Been on them 1 year. I see a whole lot of improvement, in fact of if I miss some pills I am in bad shape. I get anaphylaxis prone. So there is truth to it
We went thru this for years with my husband! They could find nothing, but they didn’t try very hard lol. When my husband starting to lose his eye sight, I did some research and he had Ankylosing spondylitis, b27 disease/gene… a gluten allergy . Which sounds so … simple or silly? Cutting gluten and dairy is a good way to start while searching for answers.
I also have AS and MCAS. It took 40 years to get the AS diagnosis. The injectable treatments I tried in 2017 caused so many weird side effects. I'd always had allergies and a gastroscopy had shown inflammation due to food sensitivities. Reactions to COVID vaccination tipped me over into a whole new pile of crazy symptoms. A year later I was diagnosed with MCAS and a raft of related food and chemical allergies. I had been vomiting for 2 days after flying. That was also put down to MCAS. It seems to have accelerated my AS a great deal in 4 years, faster than the previous 10.
I almost went blind from oxalates which are plentiful in grains. I also developed a lung tumor. After research that showed oxalates injected in rats caused cancer I eliminated the oxalates, saved my vision and the lung tumor stopped growing. Avoided a risky biopsy. I had to figure this all out on my own. I'm still the sole individual doing the research but have at least one doctor that is listening...which is far better than zilch. Only took 70 years to figure it all out.
Keep going Doctors, MCAS is horrific for the individual, mostly because hardly anyone understands it and regular folk just think your crazy. Through my journey I realized part of my issue was my latex allergy and latex related food protein allergy that became prevalent after the onset and addition to MCAS. Not one doctor in 8 years of dealing with this mentioned that my latex allergy can result in a latex-like food protein allergy , like avocado and kiwi etc.
I had felt I was low in serotonin for decades but more so since covid .. I realized that low serotonin brings out mast cells.. I think it’s the perfect storm .. low vitD & b12 .. I use tramadol for the fibro pain but it also helps my mood as it’s a serotonin reuptake inhibitor.. an antidepressant doesn’t work for me way too strong.. but low dose tramadol helps.. no dr will recognize MCAS! They just say take antihistamines then I tell them I react & can’t take them!
How are your EDS and POTS now? If you’re better, what did you try? My daughter has EDS and POTS. I need some direction or suggestions on which treatments to try. Thx
My allergist had not seen my hives and swelling so big. He said You have hives”….wow, ya think! He doesn’t want to go further to see where it’s coming from, the origin of it, he’d rather gloss over it, and inject me with Solair! I declined. I’ve had this for 5 years, but it’s only gotten worse in the last year. Every week it’s hives and some swelling. You would think with Johns Hopkins and University of MD in this state there would be someone who would know about this!
Years ago, at my last allergy test, the dr told me that it was an inexact science. I tested as allergic to seafood but never have had a problem with it.
Doc you are amazing , how you have put this all together. I have lived this way for 70 years 😮you are totally correct! Your Genius , and open hearted ❤️ thank you for your kindness and compassion, it goes a long way to this old broad LOL 😂
@@janetc4992 oh yes thank you kindly Janet ! I am in search of physicians and diagnosis and finances….I plan to heal….thank you for the love and Right Back at ya ❤️
I was gaslit for being insane for 24 years until my ribs broke from EDS and I found out about the Ehlers Danlos-POTS-MCAS triad along with Chiari Malformation and Gastroperisis so far… -__- Finish my masters in public health in 2 months🥩
After lots of research, I believe stressors such as mental stress, grief, working a job too much or working out too much, etc. cause inflammation which can lead to the disorders. I also believe that it could be a stressor that could have happened months prior to noticeable symptoms. So the stressor may not have happened right before the symptoms start.
But what is the point of taking a bunch of drugs if you still have to avoid the countless things you are reacting to? You are still stuck isolated in a box / stuck outside with no place you can go safely. Plus corn is in everything.
Imo you should be on a special diet to correct gut dysfunction. Gut damage eliminates the ability to dispatch histamine. It can also lead to other food intolerances. I suggest the scd or fodmap diet. Continue to follow your limitations as you do the diet. Later try to add back one food at a time. I'm 71 and have had lifelong issues plus doc induced set backs. So been on this diet for some years. Recently was able to add some grains back I'm and I can eat limited blue berries and pistachios. I can also eat one small piece of pineapple and strawberries a day. When I did this my hair stopped falling out due to lack of nutrition. I'm starting to get better but the longer the problem the longer it can take to rectify.
Great vid! Thank you everyone for all the sharing and suggestions. I'm 5.5 yrs into mcas. I react to every thing specialists/doctors try to reduce reactions...head to toe...VERY sensitive to chemicals..lungs...ugh...there are 3 hospitals in my area i cant even walk into....items ive found that help. 1 Acupuncture specialist certified in NAET. 2 ROYAL JELLY - from bees (has to be processed correctly) 3 candles made with pure bees wax & praise God, i have been blessed with (5) amazing, thoughtful, kind, caring, intelligent practitioners (portland, oregon) who have saved my bacon!
I don’t know ANYONE who doesn’t eventually get worse! With true MCAS. I heard Beth O Hara has, but not sure if she was clinically diagnosed or self diagnosed. Moreover, my concern is this…if it only gets worse in time and the meds just mask the symptoms, what’s it actually helping? The more I research, the more I see people who need more meds, and then more, then they don’t work and they change them, and finally it all starts to fail. I want to hear people who’ve been well for over 2 years with the same regimen. Because it seems to all eventually fail . Not trying to be a downer. Just being realistic. There has to be a way to correct this! The body is so smart! I don’t want to mask something though. I wish there were more remission stories though! Or people can go back to a somewhat sense of norm. And I’m talking about the people like me-on 8-10 foods, can’t touch meds, reacting to all cleaning agents and even smells. With nearly all the symptoms too. All do respect-just being honest, let’s hear the remission stories…otherwise, this is just cute (for lack of a better word)🤦🏻♀️
@@annacastellano4512oh my word this makes me 10x more anxious! One food. That’s scary! I’m already so anxious eating the few that I can. I don’t understand why this is so aggressive?! What’s the one food your able to eat?
@@annacastellano4512 I have so many questions. I worry about getting down to one food. Because what happens when we can’t have any foods? It’s like for me, I can’t take meds or anything…so when I can’t eat, I’m doomed to die. So what’s the point then? This disease is the Devil on earth! It literally seems to point directly at hopelessness! Reminds me of Job in the Bible. All the sores and bones. Just at a complete loss. Do the allergies ever change? I hear so many different things. Like how for some they don’t have allergies and for others they have tons. Or some had some before MCAS and others none. Then how they change. One day a food will make someone terribly sick and then they can eat it again in the future. It’s like how is this all possible? I’m to the point now where I can’t bathe with anything now. It all causes me to react.
That is crazy! I eat the same thing! I buy the fresh to frozen grass fed patty’s at Costco. Lately I’m concerned that I’m starting to react though. I just eat that, carrots, blue berries (rarely), sweet potatoes (for some reason I can eat them but not potatoes), organic quinoa (but I think I’m starting to react to this now) and broccoli. I’m trying so hard not to end my life lately. I can’t believe this happened to me. I ate decent, no drugs, no alcohol, i didn’t even drink caffeine. It sucks! I don’t want to slow my family down anymore. It hurts me to not be able to gain things with them. Because so much trigger me. I’m trying to keep fighting. What gets you through the really hard days? I love my kids, but they make me more sad. I know I’m keeping them from doing adventures and outing. It hurts! Let me tell you, I wish there was a med I could take to help with all the fear and depression that comes with this.
@@annacastellano4512 pure pharmacy. You can get propranolol without binders through them. I just got my prescriptions mailed to me. Just haven’t started them yet. As I need to be tested tomorrow and they throw things off. It’s literally the purest form of meds. Powder form and one ingredient. I know some heart meds can effect the epi pen though. So ask your doctor lots of question. I truly hope we find answers. I’m strongly debating buying Beth O’Haras mast cell protocol. As I got nothing more to lose anymore.
@@blessedlittlepaws try lard soap without any EOs. I use plain lard as a moisturizer. So back to the allergies....I've always had life threating peanut allergy and that is not going to heal but I am hopeful that if I can manage my inflammation and IBS that I will allergy test again in a year and see some improvement in my lower allergy numbers (for example my Ige blood test said Cod tested at .12. Cod is my lowest reaction number. The rest of my allergies are like class 5 or 6) I hope if my main triggers are eliminated from my diet I will be able to eat cod again.
The mainstream medical field will not recognize this syndrome until there is a better way to test and apply treatment. It is like other autoimmune diseases or Lyme disease, where they just throw up their hands and prescribe a drug that does not solve the problem.
After a Lyme antibiotic treatment I developed SIBO and then MCAS ( have not been tested for it but I am sure I have it) I can only tolerate meat 😢. Does anyone have burning pain from mouth ears, eyes to all abdomen? Then expands to burning skin, then lungs start to produce phlegm, and then chest pain and then brain fog. My symptoms appear almost in that order . Please help if you can .
Not necessarily true. I have eaten 3 foods for 10 months and am not any better and in fact worsening. If I could take amtihistamines, I feel I could turn a corner!
I had Smoldering Systemic Mastocytosis for many years. Before that diagnosis, I had so many issues it was nuts. Finally, after noticing a rash appear from pressure only, I asked my doctor if it could be Mastocytosis. He said yes! He then had me ask cardiology and pulmonology. They both agreed it could be attributed to it, with coronary artery spasm and trouble from recovering from bronchitis that made no sense. My troponin level would be at .76 with no heart issue. He sent me to an immunologist who did 1 blood test (Serum tryptase) and ruled it out because it wasn't over 20 (it was 9). My PC dr said he didn't care. He thought it was because, if it walks like a duck, quacks like a duck, it is probably a duck. And he didn't want a bone marrow biopsy because it wouldn't change his he treated me. I moved to the Miami area and they wanted to horrible bone marrow biopsy. I will never do that again! They didn't even look at the mast cells. Not one mention of them. But, my kids pediatrician knew about it and treated me. Over the years, multiple doctors could see all the evidence of it. Then one doctor said there are 2 different criteria for serum tryptase. The one that is over 20, and one that is baseline +2+20% of the baseline. He did multiple bid tests and said my baseline is 3! So that 9 was way over that criteria. Now, I have it in the gi tract, heart, spleen, skin, liver, brain, as well as caused other medical issues. My current doctor changed it to aggresive as it is spreading as becoming more difficult to control. EpiPens are becoming ineffective as well as other meds. It is funny, This doctor was almost telling my story verbatim. The pediatrician that treated me would have me sit with his shadowing med students and tell me to diagnose me. He would tell them you might not ever see another patient like me. So I would sit for sometimes an hour and go through the symptoms in order that they appeared. Not one got it. I even had one of the students come back and thank me because it was in her boards and they didn't cover in class. She wouldn't have known anything if i didn't take the time to talk to her and explain it.
Many western Dr.s dont understand TCM . In TCM they talk about yin-yang relationships like hot- cold (inflammatory-or lack of immune responses) and damp-dry (fungal- bacteria balance) I may have the last one wrong still figuring it out.
Seems to me that targeting the labs that local doctors use for their patients. Doctors have to check off boxes that he wants to run and Mast Cell Activation could be placed by the labs for doctors to see as an optional test to run.
Thank you for this video, it was absolutely wonderful to come across this and mine it for information, but also Dr Afrin's experience regarding attitudes within the profession. We are in New Zealand and it is extremely hard to get any testing done and immunologists/rheumatologists are refusing to take referrals for MCAS - even private ones. We have a gastroscopy for our son coming up so will try to get cooperation to have the CD117 staining and number per field done. I would have very much liked a bit of discussion around how MCAS can be comorbid with POTS. We have a lot of food triggers figured out but it's going to be a challenge recording triggers after syncope (as that can go along with flares) because of the lack of memory, fatigue and emotional dysregulation at those times. I had no idea that things other than food or smell could cause MCAS to flare! Thanks again, Dr Afrin.
I had an ER doctor tell me that the random bout of tatychardia looked like MCAS. Never heard of it! I’ve had random health issues for a lot of my life: Migraines, IBS, random unexplained rashes, tingles and numbness in limbs, dry eye/mucous fishing syndrome.. There seems to be a direct correlation with my mental health. So either this causes mental health issues or mental health issues (anxiety) triggers it. I had a lot of success years ago with an elimination diet.
Most people with MCAS also have EDS (Elders Danlos Syndrome) and POTS. It's considered the big three. It's completely outrageous. I have it and my symptoms are so particularly aggressive (throat swelling, chest inflammation, intolerance to 99% of foods, and central apnea with eye, ears and GI inflammation).
This is an important topic. A lot of information but still even more questions. I've seen what appears to be histamine degranulation with exposure to alcohol and sugar leading to watery eyes and squinty eyes. Thoughts? Root canal and oral microbes/ pathogens connection?
I probably had this on and off all my life and covid made it come out big time. I thought I had it and then, I got a viral cold and all hell broke loose. I recently discovered nasal chrome and that has been very helpful. I know that in a few months, I might be able to enjoy olives or salad dressing again. I had one visit with a functional medicine doc over the phone and one in person visit.
Only 16 Years, we better not rush this, lets get another 50 years or funded Tenure before we even talk about a proper solution- Congrats to the doctors going above an beyond, and outside the square to help patients.
Yes Im suffering 24/7 reaction. Im so weary now. I used to be normal. I come these podcasts looking for help for recovery and leave feeling validated, but no way to feel better
In stating that blood & urine tests for elevated mediator levels can replace biopsies, Dr Afrin did not say whether these blood & urine tests would also need to be done at research labs rather than at his (or any) clinical lab. Can you tell us the answer ? Thanks
Thank you for the helpful and informative video ! I guess my only question is how can I find a provider who is familiar with MCAS and can work with me to diagnose and formulate a treatment strategy ?
My daughter seems to have so many of the symptoms and we have only recently clued into MCAS. She approached her family physician and sadly this woman had no idea what the disease was. She sent her for a blood test and the results of that one test said she didn’t have the syndrome. She is frustrated . I too believe that my symptoms have improved through eliminating all histamine rich foods. I take an anti histamine now every day and many of my symptoms have subsided.
So after 20 minutes from the question regarding diagnostic biomarkers, FINALLY @57 the doctor mentions the Consensus 2 diagnostic criteria for MCAS. Thank you 🙏 😅
And, after one hour interview: treatments: antihistamines- I expected sthg more from a Doctor who’s aware to be interviewed by a channel devoted to Functional Medicine to be honest… maybe he can’t “expose” himself too much with complementary or naturopathic approaches, but why not meantioning sodium cromoglycinate at least - I would have been interested in learning what he thinks about it…
I want to know when Doctors who know the truths about this will rise up against all the poisoning of food, air and products that harm the people? This is one thing that has flustered me for years and the only reason I can see why they don’t is because it will clear up most of their case loads and effect their income levels!
If that was the case then everyone would have this problem, yet it's rare. Just admit to yourself that you have defective genetics instead of blaming other things
Does MCAS patients need to be vaccinated because am a nurse I don’t want my health to become worse. I already have dermatographia and lichen sclerosis which I’ve gotten over the past 5-10 years . Am on Zyrtec everyday but still have the itching and welps with several new symptoms since I’ve been to my allergist over a year ago.
I have mcas too. When my allergies flare, I take Zyrtec every 12 hours. I’m leary about vaccines, afraid of reaction to it, or to being stuck. I didn’t get Covid.
Haven't been well for years. Last year, after a virus, not covid,but I did have covid May 21, I got very sick and ended up in the hospital. Liver enzymes over 1300. The same thing happened this year. Diagnosed with autoimmune hepatitis. Can mcas cause/trigger autoimmune diseases? Thank you 😊
Could swear iv got this, I had covid Dec 2020 April 21 started to loose my hair, every shampoo, shower gel, cleaning products, my work products, even hair removal flares it up iv constant sensation in my scalp, iv had more blodtests than I can remember, been private told its histamine intolerance even 5 180mg tablets a day doesn't touch the sides of it, have loads of sensitivitys to foods, had every cream a d shampoo none help some made it worse, just dont know how to get someone to listen, im at dermatology today for the 3rd time who kp giving me cream and saying its anxiety, its absolutely ruining my life physically and mentally, feel like I'm crazy 😢
Look into peg/glycol sensitivity. Mine began like this. After nearly 8 months I can only 8-10 foods and pretty much every cleaning agent flairs me up. Native brand helped for a few months though….
I have similar symptoms and had covid in 2020 also. I believe it's MCAS... Doctors scratch their heads and send me to another specialist. I put myself on a low histamine diet and am doing somewhat better. Tomatoes and chocolate are my worst triggers. Shampoos with salicylic acid seem to help.
It's horrendous never had anything like it, iv spent an absolute fortune on shampoo creams etc , my drs are gobsmacked have no idea, just praying it goes away cldnt go on like this forever 😪
I believe the mast cell was triggered by the tetanus can’t prove it but within days of having it I got light sensitivity that bad stopped me driving at night ...you know ya self better than any1 . I do have other stuff hypertrophic cardiomyopathy and Hypermobile EDS with neck and spine issues which I’m used to but didn’t get mast cell till I was 40 odd and the symptoms started 2 days after tetanus, who knows thought I’d mention it ...I didn’t get any of the injections my choice based on my immune system problems to start with ..makes me wonder though if you know what I mean ...
I believe that it's an over agsageration of the immune system that then can't be switched off..if you do a bit of research I'm not alone and when it comes to the latest experiments which I didn't take part in there is studies now on this subject so check it out yourself ...
Wait…. how many times did he call this a disease? Typically it’s referred to as a Syndrome. Disease: a disorder of structure or function in a human, especially one that has a known cause and a distinctive group of symptoms, signs, or anatomical changes. Disease Vs. syndrome : A syndrome refers to a group of symptoms, while a disease refers to an established condition. A disease is a condition that is marked by 3 basic factors. This difference in one word caught my attention. I’m not sure if it was intentional to change mindset narrative or just a proper definition that requires a leader to step over the threshold and carry that flag of truth.
When I was a kid, starting about age 9, all the way through young adulthood, I had a very mysterious and severe itching syndrome. An allergist chalked it up to contact dermatitis, but that’s not what it was, because while it was triggered by certain things, it would also occur despite known triggers. I would get so itchy all over my body, with redness and welts, it looked like I was whipped. it was worse at night, and would even keep me awake at times. I was prescribed Seldane for years until Claritin came about. Now, as a middle-aged adult, I rarely get that anymore. However, I do have IBS with diarrhea, and I wonder if I have MCAS given this fact and my history. I’m also very sensitive to scents, smells, and chemicals. Also, I seem to be very sensitive to alcohol, which makes me feel very drowsy and pretty much useless, and for a long time after consumption.
If I have it in stage 2 can histamine help n is there some side effects if I take it often ? My symptoms in some condition r change (I don’t know why) sometimes getting worst n sometimes it doesn’t even shown.
I totally understand mcas now , stress aswell because that causes disease. I’m really not surprised the world has so many more people getting multiple autoimmune diseases, it’s easy to understand but it gets treated wrong . What if a something like the Linda bullock technique was added to help manage it and I’ve watched miracles happen with this a 72 hour water fast ? Do you think these could help . I’m studying to be a Dr my self in health science and I’m curious if those two things are to be considered.
I think the problem with many PCPs is that they blame the symptoms of MCAS on anxiety and they try to send you to a shrink, hoping all of the food allergies + scent allergies and the other weird symptoms will go away.
Yep, that’s what’s happening to my daughter! Docs are giving the depression and anxiety meds 🤦♀️ and keep telling us to eat whatever we want but the moment she eats gluten or sugar she is almost anaphylactic ☹️
I’m really allergic.
I found out because my firstborn son is highly allergic to eggs and peanuts.
It’s sad how people don’t take allergies seriously. Thinking it’s just preference diet, or a little bit will be ok or be desensitising the allergy somehow.
Even the medics questioned me “why’d you think it is allergies” when I wanted to get my Son tested.
You nailed it there and unfortunately like a fellow woman we do unfortunately get treated like that .
But girl things are changing just you wait and see .
Just got to make sure you are heard and not disregarded in any way , you know your body after all you are the only one in the world who can describe what’s going on inside because nobody else can .
Unfortunately Gp’s don’t understand it , Allergist do and probably optician’s to especially if your allergic to the sun like me now that makes me really poorly .
@@liaevans9776shocking the doctors should be ashamed of themselves. Shocking beyond belief.
Sadly it really doesn’t surprised me . I’ve worked on front line for 30 years now and I’ve seen this way to much . I have a go at them now , I had some serious adverse reactions to statins and Sertraline recently I literally thought I was going to die . They need to listen because it can be dangerous. All I can say is get knowledge and know more then them and don’t ever give up even if you become a nuisance. A doctor at a hospital told me to message them every day if I have to so I do and I make sure I get confirmation all the time , get access to your notes . Become so informed . Don’t let them fob you of . My daughter has a gluten allergy and they disregarded her constantly now I’m taking them to court because they don’t know what they are talking about .
Especially if you are a woman. Anxiety is the number one go to when they don't know what is wrong with you.
40:15 the problem is most doctors are triggered by self-diagnosis
Boy you got that right! I've had to self diagnose histamine intolerance and mcas plus porphyria and other massive food intolerances. Nobody can believe it because as many doctors said, "It's rare. I was told I'd never see it so you can't have it." Apparently rare means it doesn't exist! Which means I must be a character in a scifi novel. When I had long covid I immediately knew it was a mcas because I ate a very small amount of histamine then woke up unable to breathe. Took an expectorant then coughed it all out and spent the remainder of covid able to breathe. I tried telling people to go on a zero histamine diet but no one listened. Then I began looking for a doctor to figure it out. Finally got into a long covid program in 2023. They provided prednisone and I found other supplements and montelucast. In the mean time I had a low blood pressure event along with a sulfation problem where I collapsed then blacked out. A nurse came to my rescue. I told the hematologist the problem was low bp and a sulfation problem. He decided I didn't eat enough prior to having a pint of blood removed which was totally erroneous. I was transported to the ER where they listened to me and loaded me up with sodium. Later I left him a few notes. One said that I had purchased a 23&me and had run the data thru a methylation analyzer and that is why I knew I had a sulfur problem (plus it was causing breathing problems). So he finally realized I wasn't an idiot. Later I told him I had proof I had a genetic mcas problem because I was admitted into the long covid clinic. I had to point out that the clinic addressed mcas. He started laughing because he believed I was telling a joke. I said no it's not a joke and I explained to him that if people with covid died from cytokine storm why wouldn't it be a mcas? He couldn't refute that one. But yeah, most doctors don't even know covid is related with mcas and apparently they don't want to be responsible for any part of it. I've gotten far better responses from nurses and nurse practioners. But it's great to see doctors here who apparently realize that a large number of people need this info because we are the main researchers and instigators of treatment. Even now I'm the lone source of information when I go to both my primary and the long covid clinic where all the other patients are going back and forth on steroids and antibiotics. They aren't doing anything else and they don't know to do or try anything else. But that's Florida for you. I live on the Space Coast where the #1 priority originally was safety. Today's program is accompanied with the words, "people will die," and the rush to colonize Mars. No doubt people will die.
Meanwhile I want to offer Special Recognition to those of you who have had to do this work yourselves and to the doctors who ignored fear and thought duty was more important.
MEANWHILE:
I am certain that remedies will be forth coming due to the long years of research that are now coming to bloom and also because we have ended the last cycle of time (the End Time) and have just started a new one referred to as the golden era. Both historical and mythological data align to indicate that this is a period associated with contact with the creator, evolutionary leaps and elimination of illness. We also return to a matriarchy which will result in the elimination of war and taking care of the earth and all it's inhabitants because women are the ones who will do whatever it takes. Even now we have more women than ever running for office this next election. We should see a huge change in eliminating arrogant, selfish and angry attitudes by years end.
I know this because I have spent the last 14 years researching the end time. Good things are coming! Have a nice day!
IMO They can't stand the idea that a patient knows more than they do.
My dr told me DO NOT FORCE MY HAND 🤯 I asked for routine bloodwork that she had not ordered! I will probably have to buy my own blood work .. crazy !!
My son was a paramedic. He died after being bit or stung on the foot while giving CPR on a young lady. They got her back and loaded her in the ambulance that transported her to the hospital. He stayed behind to help clean up the scene. Within 10 minutes he died in her front yard. Anaphylaxis. He was sooooo swollen. Got the autopsy back and they said the anaphylaxis was SECONDARY to Mastocytosis !!!! I never even knew he had it. But after studying this, after the fact …. He most certainly had almost every symptom. It all makes sense now. It breaks my heart. He suffered so much. #Forever38
I am so sorry :(
Sorry for your loss. By you sharing his story, his memory continues. Thank you.
I am sorry for your loss
I am so very sorry for the heartbreaking loss of your son.
I'm so sorry. I can't imagine your grief. There's no words. There's very little awareness about mast cell diseases, even among doctors/providers. Seems like a wonderful person to help others in emergencies.
I wish more doctors were like this guy. Unfortunately I learned the hard way how incompetent, arrogant, unempathetic most are. They assume the most common circumstance rather than getting to the root of the problem. Above all they dont seem to care.
After I explained MCAS to my pulmonologist, he admitted a big part of the problem is that Drs. aren't up to date on the info that's out there and either don't want to admit it or don't care to learn. Rather than admitting their lack of knowledge they'll pass you off to another doctor. Which is what I find happens most often.
Gaslighting is big with general drs I’ve found.
I started getting severe asthma exacerbation symptoms 6 months ago outta nowhere. Had allergic rhinitis asthma n nasal polyps for years but I feel since Covid my respiratory system hasn’t been the same. Lung dr thought I had respiratory bronchiolitis from previous smoking so put me on steroids which helped but then I got bad gut issues: constipation bloating pain after eating etc… so I overdosed on fermented foods thinking it would help my gut … then boom a month later I’m
Allergic to everything food wise. Extreme asthma. Now seeing a functional Dr who’s starting with sibo/leaky gut tests. I’m sure I have this mcas disease. Life sucks right now, can’t even exercise without getting asthma. 🙄
@@melriini8280 If you stop eating the foods that are causing it, the asthma should go away. For me personally it was vegetables. Specifically brocollini, asparagus, zucchini. I had to stop eating like 99% of foods I was previously eating as I was all of a sudden reacting to everything. It does get a lot better with time though, once you work out what your triggers are.
@@melriini8280 I'm thinking you'll have much better luck with a functional dr.
HOW MANY on here had Covid
Which set off MCAS which they never had before???
This happen to me and a friend of mine.
That’s me
Covid or one dose of Vax or both who knows
Yep
Not jabbed had covid experiencing some of these symptoms especially with vision and anxiety
Me and a friend of mine.
This guy is awesome! He just described the past 20 years of my life, doc attitude included! ❤
kind of disheartening and comforting at the same time ❤
I bawled when I first watched his Mast Cell 101. He was describing 30 years of my life and with such empathy
We need more people like him. He charged 6k for initial consult and a follow up (not including tests) when I checked a couple years ago. But he does a deep dive into MCAS and your history which takes time. He has a colleague that charges about 1/2 that to get started.
@@MichaelMerritt $6K???? Nothing like exploiting the desperate. Wow
I had similarities happen to me 2 years ago after 1 year of chronic work stress. Doctors couldn't figure out what was wrong. I had to do my own research. I decided to go on a whole foods, nutrients dense anti-inflammatory diet to get rid of the inflammation and give my body what it needed to fix itself. I also focused on foods that supported my nervous system. I took a few months off work and eliminated all stress. This saved my life.
What types of foods did you eat to support the nervous system? Were you ever able to discontinue medications, after removing triggers?
@hecknogmo3720 I didn't take medications. I chose the holistic route. Just google anti-inflammatory foods. Then, google Foods for your nervous system. For the nervous system, I focused on B complex vitamins, magnesium rich foods, healthy fats and vitamin D. I stayed in tune with how I felt everyday to see how my body reacted to what I ate. Keeping the inflammation down every day is key to healing and feeling better.
@hecknogmo3720 google anti-inflammatory foods and foods that support the nervous system
Today I am diagnosed with some form of MCAS and Mastocytosis. I had to sell my business, haven't worked, and have lived as the "Man in the Bubble" ever since. It all started 12 years ago with a stick of red licorice and a body full of hives. My disease quickly progressed to be diagnosed as histamine intolerant within a month. Then six months later to be allergic to sulphites (sulfites). This would be deemed my "trigger" a few months later. All sulphites had to be eliminated from my diet including any high histamine products such as tomatoes. Today I live on fresh meat of any kind and cruciferous vegetables such as broccoli, cauliflower, green lettuce. I do cheat but not often. Now, here is the reason I'm posting. After 10-years of lockdown/isolation I now feel great! Combined with the nutritional changes I've made I then found a drug that has changed my life. It's called Sodium Cromoglycate (Nalcrom) and I take it twice a day in conjunction with Cetirizine. My dietary changes and the combination of drugs has literally changed my life. I hope this information helps someone else.
Thank you for sharing. Glad to know you got to the bottom of it.
Thank you for sharing, I loosing my life and business, going broke. I hope I find a doctor that can help me !
Peace!
OMgoodness, Warren, I did the same, with fresh meat, and cabbage. (Usually ColeSlaw) I feel 98% better, and lost a bunch of weight, as a side effect. Hydroxyzine Hcl (Atarax) and Lactaid pill, (just in case...Still looking for answers for the horrible bone pain and muscle spasms. Magnesium helps, but not enough. Thanks
I take hystrin similar with cetirizine but that make me felt so tired n sleepy whole time .
@@RisqianaTrisnani Hello, I am not familiar with the drug Hystrin. I am also very tired and sleepy most days and take a drug called Modafinil which is designed for Narcolepsy. I take 2 each 100mg tablets of Modafinil each morning and this helps to stay awake for up to. Also, when the sleeps are taking hold, I go for a 30minute nap and force myself to get up after. You have to fight this sleep side effect or it will rule your life. Before I got control of my sleep I would sleep up to 72 hours without waking. 👋😎 Big Hugs from the Canadian Rockies,
Thank you Dr. Afrin for sharing your extensive knowledge on this. We sufferers out here really appreciate you!
This is an absolutely horrible existence. I am just learning of this condition after my primary care was not aware of mast cell disease and prescribed prednisone. What a waste of time and needless suffering due to the ignorance of doctors on how to treat this disabling affliction.
Doxycycline apparently helps this along with h1 h2 antihistamines and histamine diet. Can’t get a doc to prescribe it for me
I was prescribed prednisone a couple days ago and ended up in the ER from the reaction to it
Keep trying. Eventually you'll find one.
@@staceypollack6526 Antibiotics destroy the gut and body, genius. Stop being lazy and get to your root cause.
@@staceypollack6526 Yeah you never want to take that as a pill because antibiotics create more gut damage resulting in cilia damage in the gut. Healthy cilia create DAO which dispatches the histamines. You want to do everything you can to fix the gut.
Is there a list of doctors you could share who are trained to treat MCAS?
I would like to know this also!
Check out The Mast Cell Disease Society website
These are some of the top experts:
Dr. Lawrence Afrin, Dr. Tania Dempsey, Dr. Anne Maitland, and Dr. Theoharis C. Theoharides. There are more doctors as well. I was diagnosed by Dr. Anne Maitland.
There is in the Netherlands, but not sure for other countries
Depends where you are in the world.
Here's my story... I'm about 90% healed from MCAS, that had me full blown chronic iopathic urticaria daily and only was able to eat 5 things. Took about 1 month to heal myself. I'm up to 2 adult scoops of the D-Lactate Free Probiotics powder. I started out slow because I was that ill. I cured myself, y'all! 52 years of not getting diagnosed correctly and doctors trying to give me pharmaceuticals to put a band-aid on the problem. I studied for 4 years to try to heal myself. I was sick and tired of my eyes being swollen shut and not being able to drink or eat anything. Heal your gut and quit this insanity!
Is there a doctor that assisted you in finding what probiotic you needed? I’m at 4 foods, severely underweight, and terrified.
@sharlene4mylife I found this man. He is not a doctor, but he is more knowledgeable than any doctor I've seen in 52 years! This is from his website....
Harry Bronozian
CUSTOM PROBIOTICS Inc, established in 1999, was developed by Harry Bronozian, a chemist and chemical engineer, who personally suffered from Helicobacter Pylori, the bacteria that causes ulcers. After years of trying different probiotic supplements, Mr. Bronozian formulated his own multi-strain high-potency probiotic formula. Within a few months of using his own custom probiotic supplement, he discovered that the H. Pylori was under control. After eight months of use, an endoscopy and biopsy concluded that Mr. Bronozian had eliminated H. Pylori from his system.
I called him and told him my symptoms, and he recommended the D-Lactate Free Probiotics powder. His business is at 2947 Honolulu Ave, Glendale, California.
I really believe he can help!
I'm back to eating and drinking most things!!!
I wish you all healing and good health!!!
What did you do to heal?
@janetnorris2255 I take D-Lactate Free Probiotics. It has a blend of 4 different strains for histamine intolerance. Look up Custom Probiotics. They're based in Glendale, California. I wish you well.
oh my goodness, spontaenous idiopathic chronic urticaria was my diagnosis until i saw an FM Doctor who diagnosed with MCAS and i can hands down recommend watching this video: ua-cam.com/video/n4h_gQzcCKc/v-deo.html and checking out Mast Cell Matters podcast. I spent 12 years trying to heal myself, ending up on the FM route and whilst i am relatively symptom free nowadays with the occasional attack (mine is stress, pressure and temperatiure and alcohol as well as white bread and other things triggers mine - a long route of elimination is hard when it can be triggered by temperature!), its nice to be able to actually look at the reason and how to heal. circadian health (getting out in morning for UVA/UVB light) Blocking blue light (viva rays), red light supplementation to boost mitochrondrial function (EMR-Tek panel) have worked for me. I am looking into toxaprevent and quercetin following recommendations from an FM pathway not used those yet though!
Mcas has increased 10 fold since Covid.
Of course it has 😱
We need to talk about the neuro effects too
Totally right
Mast cells issues can cause hyper mobility which is common to have if you also have adhd / autisum also see pots which can cause brain fog
My brain has melted.
I agree. My short term memory is totally shot. Cbd was somewhat helpful for memory. There are many mushroom and supplements to try.
@jessamyn-rosie755. EDS! UNDERLINING EDS, LYME
I’ve been using colostrum, I found this has dramatically dropped the symptoms.
So much to learn with this disease.
Still good?
Yes, symptoms still dramatically reduced!
@@laurasmith1831
Amazing
1. Did it cause side effects in the beginning?
2. How much does it help?
3. What dose and how often do you take it?
4. What brand do you use?
@@laurasmith1831 Holy shit, how fast was the relief?
I think it took several weeks, I’ve been on it for so long. Now it’s hard to remember, but I think a few weeks.
I wonder if more attention being paid to vagus nerve suppression from compression as often seen around C1/C2 after a trauma, thereby reducing the regulation process of the parasympathetic nervous system could not be a key to understanding these overactive sympathetic nervous system responses, this is not usually ever checked in my experience, but it seems like something we should at least consider to my layman’s thinking.
I have this same problem.
No one is checking this and I am suspecting this is potentially a case for a lot of people with mcas
I think the common denominator in all chronic illness is immune dysfunction. Most likely caused by the assault on our systems by artificial and toxic ingredients in our food, personal care products and environment
I wonder if it has to do with vaccines. I have tried to isolate contributing ingredients unsuccessfully. MSG, mixed spices, mushrooms, bacterial infections, flatulence.....my doctor put a label on it 'uticaria' and shakes her head. I need a cure or an excellent treatment.
I agree and trapped negative emotions contribute as well as subluxation-facia etc. Vitamins, herbs, and minerals, sunlight, light exercise, and grounding help me to wind down. Understanding old childhood contexts, forgiveness, and looking to the Ultimat Ideal-prayer-meditation streching breathing exercises have helped a lot too.
@@Needless2saydo you have heds to I have asperger's ADHD fybromyalgia CFS we can't stand stress chemis etc
So true though like for myself when we have asperger's ADHD heds we can take less than general population I have fybromyalgia CFS
@@SuperJudy1949what are your symptoms
So whats the treatment?
🙆♀️
I have just yesterday been diagnosed with MCAS. This has been an over 10 years of suffering on off.
This doctor is right...maybe even many functional doctors don't necessarily look for MCAS.
Biopsies, I have never done....🙆♀️🙆♀️
I think I may have this also. May I ask your symptoms?
50 years of suffering here.
62, here
Low hiistamiiine diet is the first line of defense for me which clued me into the mast cell problem. I am on my own here in small town Alberta so, these videos are a wonderful assist. I have long covid and I believe it is driven by mast cell activation. My Dr. does not believe nor understand that possibility. I take things that boost DAO and I have less symptoms but sometimes harsh reactivation of symptoms. Polyethyleneglycol is a big trigger for me...it is in many drugs and foods. I walk a fine line and eat a very limited diet, which also causes a lot of eye rolling from friends and family. Oh well. I do what I can for me and maybe can prevent the usual three visits a year to emergency with brutal gastric pain, vomitting and the other thing.
i think if we had any health professionals brave enough to look at the PEG issue and where we are exposed to it consistently in immune stimulation we might make bigger breakthroughs in the development of dodgy mast cells and symptoms and teh complexities!! wonder what we do that stimulates the immune system before it has had a chance to develop?? hmmm
What do you take to active DAO? Thank u
I needed help with the inflammatory issues and wanted to try things to boost the DAO level. May I ask what brand of DAO that you use? Thanks
@@chantellucky4565 Saccharomyces Boulardii Probiotic. 10 Billion CFU of S Boulardii. This is the only thing that agrees with me.
@@tammystempky5709 Look up the Seeking Health brand
Dr Afrin is my hero. I have Systemic Mastocytosis. He helped my PA Allergist with questions. I can't imagine someone being both so very brilliant and so very humble at the same time but their he is. Seriously. My hero. And yes I'm a unicorn. Doctors lose their minds when they find out I have SM. I feel like a dog and pony show as they schedule "Fellows" to meet with me all the time. But I'm glad to help spread the word by answering their questions.
I cant get a straight answer on whether having Systemic Mastocytosis also often include MCAS. It certainly feels that is the case.
I am currently on a trial for bluzaclastinub and its been INCREDIBLE. not perfect yet but I'm sure dosing adjustments would make it even more amazing.
Did you get a bone marrow biopsy for the diagnosis?
@@NitaJain yes I’ve had 6 of them at various points now.
amazing you have access to this new drug, important question since you have been on Bezuclastinib, have your tiggers and reactions to triggers (mast cell activation) subsided ? Many of the older KIT inhibitor don't work that well on MC activation.@@RunningWithSauce
Was your baseline Tryptase over 11?
@@blessedlittlepaws yes 48
An animal foods based diet is key. Plant toxins such as oxalic acid, phytic acid, solanine, psoralen, lectins, goitrogens, etc., all contribute to immune dysfunction. Modern humans suffer from the consequences of poor nutrition, namely metabolic disease (insulin resistance) as the root cause.
Doctors were no help. I did my own research. Fixed my symptoms with an anti-inflammatory diet and stress elimination. I asked my last doctor what could have caused all those symptoms. He dismissed it and said its irrelevant now. What?! He just missed the opportunity to possibly help so many other patients if what I did to help myself could help them. I will never stay with a doctor that dismisses my legitimate concerns again. I will continue to educate myself on health so I can be my own advocate.
Would love to know how you ate?
I am curious to know if Dr. Afrin is looking at mold & mycotoxins exposures in patients? Mymycolab has an excellent blood test that determines these and ones that are causing the body to react.
Definitely can be one trigger of MCAS. Also heavy metals. Mercury kicked off mine - then mold showed up later to kick my butt again! Fun stuff, those nightmare toxins.
@@beautifulwaterfall222do you have fybromyalgia symptoms
Lyme, bartonella, contrast dye
My daughter is in the medical field and TWO YEARS AGO, right after her 3rd shot, (1st booster), she started becoming hyper sensitive to her PPE, especially the vinyl gloves.
She is celiac (auto-immune) and was always very careful.
Her inflammation skyrocketed, with each contact (an other things she found out later) blistering rash, rapid heart beat, etc.
She was pulled out of that environment and was able to work from home while she went from doctor to allergist to nutritionist, etc.
It was found she had super high amounts of tellurium in her system????
She was found to have become allergic to ALL manmade plastics and rubbers... silicon, vinyl, latex, etc which is used on almost everything
To get the hyper inflation under control, she removed all kinds of trigger and inflation causing foods.
One year ago, Finally finding someone that took the time to work with her, it was determined she is hyper sensitive to CORN PROTEIN.
Guess what corn protein is in and is made into????? EVERYTHING. Of course GMO and exposed to glyphosate.
Poor thing has lost 40+ pounds on her strict diet only to more recently having become sensitive to POLYESTER !!!!
so now she had to to warddrobe her clothes, bedding furniture, stuffed animals etc!
Apparently, polyester has been reformulated in the last few years and includes CORN BYPRODUCTS!!!!!
This has been a nightmare for her. I wonder how many others have been thrust into this hyper-inflamation by the spike protein concentration in the shots.
I’m sorry your daughter has to go through this. Glysophate is the problem and so are the preservatives put in food. Most are soy or corn based. Soy is in EVERYTHING. Just check the labels. Too much of one thing is not healthy.
Oh my God! That is just too awful!! I am loss of words to your daughter’s unfortunate situation cause by the ever evil spike protein shot! 😢 Her life really changed and I am sure it affects her well being 24/7!! I cannot imagine what each day is like to be living this way! I hope you can do research to find ways for relief for her and if there is a chance to see a functional doctor to help detox the mrna spike protein out of her system bit by bit. Blessings…
please have your daughter look into the carnivore diet! It's the only thing that's helped me with my histamine issues
My son developed MCAS after receiving the Covid vaccination shot. I don’t know how to prove it but it’s convincing that I am not alone .
Please keep us updated. I’m 21 years old. I was recently diagnosed with MCAS (but carcinoid syndrome, etc, still in the differential. I need to undergo testing). I had the Johnson and Johnson shot in 2021. After getting reinfected with Covid 15ish weeks ago, my body shut down.
I been at ERs over 20 times in 3 months. Was hospitalized for 4 days.
I started having allergic reactions to many different medications, and the only thing that seems to help (for about 2 hours) are antihistamines.
I’m going to see an allergist soon. I’ll share updates
I’d be one of those unfortunate souls 🙋♀️ I’m a college student and spent the entire first half of last semester in constant anaphylaxis. So extremely hard to explain to my professors, especially without a diagnosis at the time. I had an epi pen bc this started happening over the summer but I never used it bc I didn’t see the point. I only have two and I was in that state 24/7 for 6 weeks. All I could do was bed rest and antihistamines. Allergist was baffled that I wasn’t using it, but thankfully I never stopped breathing. It was always a tight rope to walk. Doctors told me for years my symptoms were due to anxiety :)
please look into the carnivore diet. It's the only that's helped me
@@charis808 mEaT
@@kileyfoxhall3041 I didn’t believe the doctors either when my doc said it’s related to my anxiety. Then just to try I started taking anti anxiety meds. Been on them 1 year. I see a whole lot of improvement, in fact of if I miss some pills I am in bad shape. I get anaphylaxis prone. So there is truth to it
We went thru this for years with my husband! They could find nothing, but they didn’t try very hard lol. When my husband starting to lose his eye sight, I did some research and he had Ankylosing spondylitis, b27 disease/gene… a gluten allergy . Which sounds so … simple or silly? Cutting gluten and dairy is a good way to start while searching for answers.
I also have AS and MCAS. It took 40 years to get the AS diagnosis. The injectable treatments I tried in 2017 caused so many weird side effects. I'd always had allergies and a gastroscopy had shown inflammation due to food sensitivities. Reactions to COVID vaccination tipped me over into a whole new pile of crazy symptoms. A year later I was diagnosed with MCAS and a raft of related food and chemical allergies. I had been vomiting for 2 days after flying. That was also put down to MCAS. It seems to have accelerated my AS a great deal in 4 years, faster than the previous 10.
@@debbiejones6654as is also linked to ADHD my friend has both but no pain now I
I almost went blind from oxalates which are plentiful in grains. I also developed a lung tumor. After research that showed oxalates injected in rats caused cancer I eliminated the oxalates, saved my vision and the lung tumor stopped growing. Avoided a risky biopsy. I had to figure this all out on my own. I'm still the sole individual doing the research but have at least one doctor that is listening...which is far better than zilch. Only took 70 years to figure it all out.
Keep going Doctors, MCAS is horrific for the individual, mostly because hardly anyone understands it and regular folk just think your crazy. Through my journey I realized part of my issue was my latex allergy and latex related food protein allergy that became prevalent after the onset and addition to MCAS. Not one doctor in 8 years of dealing with this mentioned that my latex allergy can result in a latex-like food protein allergy , like avocado and kiwi etc.
I had felt I was low in serotonin for decades but more so since covid .. I realized that low serotonin brings out mast cells.. I think it’s the perfect storm .. low vitD & b12 .. I use tramadol for the fibro pain but it also helps my mood as it’s a serotonin reuptake inhibitor.. an antidepressant doesn’t work for me way too strong.. but low dose tramadol helps.. no dr will recognize MCAS! They just say take antihistamines then I tell them I react & can’t take them!
Thank you for validation... I also have EDS and pots... 43 before any doctor took me seriously.
How are your EDS and POTS now? If you’re better, what did you try? My daughter has EDS and POTS. I need some direction or suggestions on which treatments to try. Thx
My allergist had not seen my hives and swelling so big. He said You have hives”….wow, ya think! He doesn’t want to go further to see where it’s coming from, the origin of it, he’d rather gloss over it, and inject me with Solair! I declined. I’ve had this for 5 years, but it’s only gotten worse in the last year. Every week it’s hives and some swelling. You would think with Johns Hopkins and University of MD in this state there would be someone who would know about this!
Were you exposed to mold or heavy metals before it started?
@@beautifulwaterfall222 No metals or mold…that I’m aware of.
I feel you! In the 80’s my allergist did a scratch test, then laughed, shrugged, and said, « It is like reading Braille. »
Years ago, at my last allergy test, the dr told me that it was an inexact science. I tested as allergic to seafood but never have had a problem with it.
I would do anything to improve the quality of life for someone I have in my life suffering from MCAS.
I suffer of it! 😢
I get that!
unfortunatly every body is not like you
Doc you are amazing , how you have put this all together. I have lived this way for 70 years 😮you are totally correct! Your Genius , and open hearted ❤️ thank you for your kindness and compassion, it goes a long way to this old broad LOL 😂
Oh my goodness. I thought my 30 plus years was a lot. Love to you
@@janetc4992 oh yes thank you kindly Janet ! I am in search of physicians and diagnosis and finances….I plan to heal….thank you for the love and Right Back at ya ❤️
I was gaslit for being insane for 24 years until my ribs broke from EDS and I found out about the Ehlers Danlos-POTS-MCAS triad along with Chiari Malformation and Gastroperisis so far… -__- Finish my masters in public health in 2 months🥩
But what’s the root cause? Can we not ‘reverse’ this somehow?
What are the markers to look for in a clinical lab for the mass cell elevation?
After lots of research, I believe stressors such as mental stress, grief, working a job too much or working out too much, etc. cause inflammation which can lead to the disorders. I also believe that it could be a stressor that could have happened months prior to noticeable symptoms. So the stressor may not have happened right before the symptoms start.
But what is the point of taking a bunch of drugs if you still have to avoid the countless things you are reacting to? You are still stuck isolated in a box / stuck outside with no place you can go safely. Plus corn is in everything.
Imo you should be on a special diet to correct gut dysfunction. Gut damage eliminates the ability to dispatch histamine. It can also lead to other food intolerances. I suggest the scd or fodmap diet. Continue to follow your limitations as you do the diet. Later try to add back one food at a time. I'm 71 and have had lifelong issues plus doc induced set backs. So been on this diet for some years. Recently was able to add some grains back I'm and I can eat limited blue berries and pistachios. I can also eat one small piece of pineapple and strawberries a day. When I did this my hair stopped falling out due to lack of nutrition. I'm starting to get better but the longer the problem the longer it can take to rectify.
Great vid! Thank you everyone for all the sharing and suggestions. I'm 5.5 yrs into mcas. I react to every thing specialists/doctors try to reduce reactions...head to toe...VERY sensitive to chemicals..lungs...ugh...there are 3 hospitals in my area i cant even walk into....items ive found that help. 1 Acupuncture specialist certified in NAET. 2 ROYAL JELLY - from bees (has to be processed correctly) 3 candles made with pure bees wax & praise God, i have been blessed with (5) amazing, thoughtful, kind, caring, intelligent practitioners (portland, oregon) who have saved my bacon!
Mold deregulates glutathione production in which case toxins can build up. At some point the bodys alarm systems go off.
Mold almost killed me. My digestion completely stopped. I thought I had colon cancer.
I don’t know ANYONE who doesn’t eventually get worse! With true MCAS. I heard Beth O Hara has, but not sure if she was clinically diagnosed or self diagnosed. Moreover, my concern is this…if it only gets worse in time and the meds just mask the symptoms, what’s it actually helping? The more I research, the more I see people who need more meds, and then more, then they don’t work and they change them, and finally it all starts to fail. I want to hear people who’ve been well for over 2 years with the same regimen. Because it seems to all eventually fail . Not trying to be a downer. Just being realistic. There has to be a way to correct this! The body is so smart! I don’t want to mask something though. I wish there were more remission stories though! Or people can go back to a somewhat sense of norm. And I’m talking about the people like me-on 8-10 foods, can’t touch meds, reacting to all cleaning agents and even smells. With nearly all the symptoms too. All do respect-just being honest, let’s hear the remission stories…otherwise, this is just cute (for lack of a better word)🤦🏻♀️
@@annacastellano4512oh my word this makes me 10x more anxious! One food. That’s scary! I’m already so anxious eating the few that I can. I don’t understand why this is so aggressive?! What’s the one food your able to eat?
@@annacastellano4512 I have so many questions. I worry about getting down to one food. Because what happens when we can’t have any foods? It’s like for me, I can’t take meds or anything…so when I can’t eat, I’m doomed to die. So what’s the point then? This disease is the Devil on earth! It literally seems to point directly at hopelessness! Reminds me of Job in the Bible. All the sores and bones. Just at a complete loss. Do the allergies ever change? I hear so many different things. Like how for some they don’t have allergies and for others they have tons. Or some had some before MCAS and others none. Then how they change. One day a food will make someone terribly sick and then they can eat it again in the future. It’s like how is this all possible? I’m to the point now where I can’t bathe with anything now. It all causes me to react.
That is crazy! I eat the same thing! I buy the fresh to frozen grass fed patty’s at Costco. Lately I’m concerned that I’m starting to react though. I just eat that, carrots, blue berries (rarely), sweet potatoes (for some reason I can eat them but not potatoes), organic quinoa (but I think I’m starting to react to this now) and broccoli. I’m trying so hard not to end my life lately. I can’t believe this happened to me. I ate decent, no drugs, no alcohol, i didn’t even drink caffeine. It sucks! I don’t want to slow my family down anymore. It hurts me to not be able to gain things with them. Because so much trigger me.
I’m trying to keep fighting. What gets you through the really hard days? I love my kids, but they make me more sad. I know I’m keeping them from doing adventures and outing. It hurts! Let me tell you, I wish there was a med I could take to help with all the fear and depression that comes with this.
@@annacastellano4512 pure pharmacy. You can get propranolol without binders through them. I just got my prescriptions mailed to me. Just haven’t started them yet. As I need to be tested tomorrow and they throw things off. It’s literally the purest form of meds. Powder form and one ingredient. I know some heart meds can effect the epi pen though. So ask your doctor lots of question. I truly hope we find answers. I’m strongly debating buying Beth O’Haras mast cell protocol. As I got nothing more to lose anymore.
@@blessedlittlepaws try lard soap without any EOs. I use plain lard as a moisturizer. So back to the allergies....I've always had life threating peanut allergy and that is not going to heal but I am hopeful that if I can manage my inflammation and IBS that I will allergy test again in a year and see some improvement in my lower allergy numbers (for example my Ige blood test said Cod tested at .12. Cod is my lowest reaction number. The rest of my allergies are like class 5 or 6) I hope if my main triggers are eliminated from my diet I will be able to eat cod again.
The mainstream medical field will not recognize this syndrome until there is a better way to test and apply treatment. It is like other autoimmune diseases or Lyme disease, where they just throw up their hands and prescribe a drug that does not solve the problem.
After a Lyme antibiotic treatment I developed SIBO and then MCAS ( have not been tested for it but I am sure I have it) I can only tolerate meat 😢. Does anyone have burning pain from mouth ears, eyes to all abdomen? Then expands to burning skin, then lungs start to produce phlegm, and then chest pain and then brain fog. My symptoms appear almost in that order . Please help if you can .
With me it turned out to be sensitivity to Salicylates in vegetables and fruit. Also egg triggered my body and my LS. Elimination diet is key ...
Thats not getting to the root problem. A healthy body should be able to eat a variety of foods.....
Not necessarily true. I have eaten 3 foods for 10 months and am not any better and in fact worsening. If I could take amtihistamines, I feel I could turn a corner!
I had Smoldering Systemic Mastocytosis for many years. Before that diagnosis, I had so many issues it was nuts. Finally, after noticing a rash appear from pressure only, I asked my doctor if it could be Mastocytosis. He said yes! He then had me ask cardiology and pulmonology. They both agreed it could be attributed to it, with coronary artery spasm and trouble from recovering from bronchitis that made no sense. My troponin level would be at .76 with no heart issue.
He sent me to an immunologist who did 1 blood test (Serum tryptase) and ruled it out because it wasn't over 20 (it was 9).
My PC dr said he didn't care. He thought it was because, if it walks like a duck, quacks like a duck, it is probably a duck. And he didn't want a bone marrow biopsy because it wouldn't change his he treated me.
I moved to the Miami area and they wanted to horrible bone marrow biopsy. I will never do that again! They didn't even look at the mast cells. Not one mention of them.
But, my kids pediatrician knew about it and treated me. Over the years, multiple doctors could see all the evidence of it. Then one doctor said there are 2 different criteria for serum tryptase. The one that is over 20, and one that is baseline +2+20% of the baseline. He did multiple bid tests and said my baseline is 3! So that 9 was way over that criteria.
Now, I have it in the gi tract, heart, spleen, skin, liver, brain, as well as caused other medical issues. My current doctor changed it to aggresive as it is spreading as becoming more difficult to control. EpiPens are becoming ineffective as well as other meds.
It is funny, This doctor was almost telling my story verbatim.
The pediatrician that treated me would have me sit with his shadowing med students and tell me to diagnose me. He would tell them you might not ever see another patient like me. So I would sit for sometimes an hour and go through the symptoms in order that they appeared. Not one got it. I even had one of the students come back and thank me because it was in her boards and they didn't cover in class. She wouldn't have known anything if i didn't take the time to talk to her and explain it.
Many western Dr.s dont understand TCM . In TCM they talk about yin-yang relationships like hot- cold (inflammatory-or lack of immune responses) and damp-dry (fungal- bacteria balance) I may have the last one wrong still figuring it out.
So interesting about the archived biopsies being re-examined. 31:00
i have this thank you both!! she is gorgeous. i could look at listen to her all day
Seems to me that targeting the labs that local doctors use for their patients. Doctors have to check off boxes that he wants to run and Mast Cell Activation could be placed by the labs for doctors to see as an optional test to run.
❤ Doctor Afrin is Loved ❤ Thank you
Thank you for this video, it was absolutely wonderful to come across this and mine it for information, but also Dr Afrin's experience regarding attitudes within the profession. We are in New Zealand and it is extremely hard to get any testing done and immunologists/rheumatologists are refusing to take referrals for MCAS - even private ones. We have a gastroscopy for our son coming up so will try to get cooperation to have the CD117 staining and number per field done.
I would have very much liked a bit of discussion around how MCAS can be comorbid with POTS. We have a lot of food triggers figured out but it's going to be a challenge recording triggers after syncope (as that can go along with flares) because of the lack of memory, fatigue and emotional dysregulation at those times. I had no idea that things other than food or smell could cause MCAS to flare!
Thanks again, Dr Afrin.
Look into alpha gal !! On set by a tick bite. There’s a direct correlation with people who have alpha gal and MCAS.
MCAS and covid/vax. I think it’s a real big problem.
Huge health went down hill
Yup I got it now. Worst nuero problems ever
I had an ER doctor tell me that the random bout of tatychardia looked like MCAS. Never heard of it! I’ve had random health issues for a lot of my life:
Migraines, IBS, random unexplained rashes, tingles and numbness in limbs, dry eye/mucous fishing syndrome..
There seems to be a direct correlation with my mental health. So either this causes mental health issues or mental health issues (anxiety) triggers it.
I had a lot of success years ago with an elimination diet.
Thank you so much for the great information and Dr. Afrins weath of knowledge of this subject. ❤
Are the mast cell mutation possibly connected to the EBV?
Oh my gosh how can I see you I have mcas been misdiagnosed for decades with Hypermobility elders danlos syndrome
You could have the mast syndrome issue which is causing the other issues
Most people with MCAS also have EDS (Elders Danlos Syndrome) and POTS. It's considered the big three. It's completely outrageous. I have it and my symptoms are so particularly aggressive (throat swelling, chest inflammation, intolerance to 99% of foods, and central apnea with eye, ears and GI inflammation).
The cause if heds is highly linked to autism ADHD heds fybromyalgia cfs ime late diagnosed 43 mcas is caused by the autism by what I've read
@@StudioModdo you have ADHD autism to ime awaiting sleep apnea muscle pain worst symptom nowadays in ldn
@@Truerealism747No, I don't have autism or ADHD.
What are the markers to check for diagnosis? You mentioned 10.
Thank you for valuables info.
Thank you for the video!
This is an important topic. A lot of information but still even more questions. I've seen what appears to be histamine degranulation with exposure to alcohol and sugar leading to watery eyes and squinty eyes. Thoughts? Root canal and oral microbes/ pathogens connection?
I probably had this on and off all my life and covid made it come out big time. I thought I had it and then, I got a viral cold and all hell broke loose. I recently discovered nasal chrome and that has been very helpful. I know that in a few months, I might be able to enjoy olives or salad dressing again. I had one visit with a functional medicine doc over the phone and one in person visit.
My 42 yr old son is "dying" from these symptoms. I need his GI to order the test on the specimen from his colonoscopy 2 yrs ago.
My mcas has even caused heart attacks called kounis syndrome
Only 16 Years, we better not rush this, lets get another 50 years or funded Tenure before we even talk about a proper solution- Congrats to the doctors going above an beyond, and outside the square to help patients.
Yes Im suffering 24/7 reaction. Im so weary now. I used to be normal. I come these podcasts looking for help for recovery and leave feeling validated, but no way to feel better
He never named specific labs to ask for to detect elevated levels of the triggered mediators ?
Excellent thank you!
How can I get Medicaid to cover going back and re-testing pathology samples? / biopsies
In stating that blood & urine tests for elevated mediator levels can replace biopsies, Dr Afrin did not say whether these blood & urine tests would also need to be done at research labs rather than at his (or any) clinical lab. Can you tell us the answer ? Thanks
Thank you for the helpful and informative video ! I guess my only question is how can I find a provider who is familiar with MCAS and can work with me to diagnose and formulate a treatment strategy ?
Great interview. Great guest!
Omg this dr us so right! They give 4 different types of tramadol and one I react to different manufacturers.. they buy the cheapest 🤷🏻♀️
My daughter seems to have so many of the symptoms and we have only recently clued into MCAS. She approached her family physician and sadly this woman had no idea what the disease was. She sent her for a blood test and the results of that one test said she didn’t have the syndrome. She is frustrated . I too believe that my symptoms have improved through eliminating all histamine rich foods. I take an anti histamine now every day and many of my symptoms have subsided.
What antihistamine do you take?
So after 20 minutes from the question regarding diagnostic biomarkers, FINALLY @57 the doctor mentions the Consensus 2 diagnostic criteria for MCAS. Thank you 🙏 😅
And, after one hour interview: treatments: antihistamines- I expected sthg more from a Doctor who’s aware to be interviewed by a channel devoted to Functional Medicine to be honest… maybe he can’t “expose” himself too much with complementary or naturopathic approaches, but why not meantioning sodium cromoglycinate at least - I would have been interested in learning what he thinks about it…
I want to know when Doctors who know the truths about this will rise up against all the poisoning of food, air and products that harm the people? This is one thing that has flustered me for years and the only reason I can see why they don’t is because it will clear up most of their case loads and effect their income levels!
If that was the case then everyone would have this problem, yet it's rare. Just admit to yourself that you have defective genetics instead of blaming other things
Does MCAS patients need to be vaccinated because am a nurse I don’t want my health to become worse. I already have dermatographia and lichen sclerosis which I’ve gotten over the past 5-10 years . Am on Zyrtec everyday but still have the itching and welps with several new symptoms since I’ve been to my allergist over a year ago.
I have mcas too. When my allergies flare, I take Zyrtec every 12 hours. I’m leary about vaccines, afraid of reaction to it, or to being stuck. I didn’t get Covid.
Personally, no don't get it. 🙏
I have treated patients whose symptoms began and others who flared with covid 19 shots.
I am eating 3 foods. I don't dare get any shots! So no dont do it.
@@sarahb.6475 what 3 foods are you eating?
Amazing talk. Thank you.
Haven't been well for years. Last year, after a virus, not covid,but I did have covid May 21, I got very sick and ended up in the hospital. Liver enzymes over 1300. The same thing happened this year. Diagnosed with autoimmune hepatitis. Can mcas cause/trigger autoimmune diseases? Thank you 😊
Neuropsychiatric symptoms are a living hell
I wish this long conversation had at least described what to expect, what to look for on a patient presenting this condition.
Dr Afrin wrote a book. And his Mast Cell 101 video is helpful!
They don’t know. 😢
Had to go to ER for possible broken finger. Said to the ER doctor that I had been diagnosed with mast cell activation syndrome. He said "What's that?"
Will il17 inhibitors help with mast cell activation? I think more data is coming out supporting the use of IL17 inhibitors. Any input ?
Amazing doctor.
Could swear iv got this, I had covid Dec 2020 April 21 started to loose my hair, every shampoo, shower gel, cleaning products, my work products, even hair removal flares it up iv constant sensation in my scalp, iv had more blodtests than I can remember, been private told its histamine intolerance even 5 180mg tablets a day doesn't touch the sides of it, have loads of sensitivitys to foods, had every cream a d shampoo none help some made it worse, just dont know how to get someone to listen, im at dermatology today for the 3rd time who kp giving me cream and saying its anxiety, its absolutely ruining my life physically and mentally, feel like I'm crazy 😢
Look into peg/glycol sensitivity. Mine began like this. After nearly 8 months I can only 8-10 foods and pretty much every cleaning agent flairs me up. Native brand helped for a few months though….
I have similar symptoms and had covid in 2020 also. I believe it's MCAS... Doctors scratch their heads and send me to another specialist. I put myself on a low histamine diet and am doing somewhat better. Tomatoes and chocolate are my worst triggers. Shampoos with salicylic acid seem to help.
It's horrendous never had anything like it, iv spent an absolute fortune on shampoo creams etc , my drs are gobsmacked have no idea, just praying it goes away cldnt go on like this forever 😪
My troublesome filler is CORN which is in everything! 😢
2hat are your symptoms
You should be on a fresh food low histamine diet like fodmap or scd diet.
Corn is one of my biggest triggers too!
And coffee
@@staysaltycoaching do you have muscle pain
Amazing Doctor! 👍🏻
Patience and humility :-)
What type of dr tests for this and what are some of the other drugs other then h 1 h2
Sold not be saying causes. The actual cause is unknown. Should be saying triggers Mastocytosis.
I believe the mast cell was triggered by the tetanus can’t prove it but within days of having it I got light sensitivity that bad stopped me driving at night ...you know ya self better than any1 . I do have other stuff hypertrophic cardiomyopathy and Hypermobile EDS with neck and spine issues which I’m used to but didn’t get mast cell till I was 40 odd and the symptoms started 2 days after tetanus, who knows thought I’d mention it ...I didn’t get any of the injections my choice based on my immune system problems to start with ..makes me wonder though if you know what I mean ...
Did it contain mnra?
I believe that it's an over agsageration of the immune system that then can't be switched off..if you do a bit of research I'm not alone and when it comes to the latest experiments which I didn't take part in there is studies now on this subject so check it out yourself ...
Oh how i love being one of 'the poor poor souls with anaphylaxis' MCAS 😅
So realistically, getting diagnosed is nearly impossible? I've been taking oral cromolyn sodium for years, and all the symptoms, and still no dx.
Seems to get diagnosed via array of symptoms often, but types like mastocytic enterocolitis can be diagnosed via biopsy I believe
What chromolyn sodium do you use ? Thank you
@@Redwood14 by Micro Labs
Wait…. how many times did he call this a disease? Typically it’s referred to as a Syndrome.
Disease: a disorder of structure or function in a human, especially one that has a known cause and a distinctive group of symptoms, signs, or anatomical changes.
Disease Vs. syndrome :
A syndrome refers to a group of symptoms, while a disease refers to an established condition. A disease is a condition that is marked by 3 basic factors.
This difference in one word caught my attention. I’m not sure if it was intentional to change mindset narrative or just a proper definition that requires a leader to step over the threshold and carry that flag of truth.
I believe one day it will be labeled as a disease. They just haven’t gotten there yet.
When I was a kid, starting about age 9, all the way through young adulthood, I had a very mysterious and severe itching syndrome. An allergist chalked it up to contact dermatitis, but that’s not what it was, because while it was triggered by certain things, it would also occur despite known triggers. I would get so itchy all over my body, with redness and welts, it looked like I was whipped. it was worse at night, and would even keep me awake at times. I was prescribed Seldane for years until Claritin came about. Now, as a middle-aged adult, I rarely get that anymore. However, I do have IBS with diarrhea, and I wonder if I have MCAS given this fact and my history. I’m also very sensitive to scents, smells, and chemicals. Also, I seem to be very sensitive to alcohol, which makes me feel very drowsy and pretty much useless, and for a long time after consumption.
If I have it in stage 2 can histamine help n is there some side effects if I take it often ? My symptoms in some condition r change (I don’t know why) sometimes getting worst n sometimes it doesn’t even shown.
Lyme and co-infections and mast cell ?
I totally understand mcas now , stress aswell because that causes disease.
I’m really not surprised the world has so many more people getting multiple autoimmune diseases, it’s easy to understand but it gets treated wrong .
What if a something like the Linda bullock technique was added to help manage it and I’ve watched miracles happen with this a 72 hour water fast ? Do you think these could help . I’m studying to be a Dr my self in health science and I’m curious if those two things are to be considered.
i did water fasting for 4 days ... but it chanced nothing
Really. Have you ever been to an allergist ? I know exactly I’m intolerances I have been tested by an allergist and that really helped .
yes ... i was tested a little positive on gras ... but if you have leaky gutfor many years allergie test work not like this ... @@daniellerandall6486
How expensive is the testing???