Root Causes & Treatment of Mast Cell Disease

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The Institute for Functional Medicine

The Institute for Functional Medicine

Жыл бұрын

Mast cell activation disorders may present as episodic inflammatory symptoms that come and go over time making them difficult to diagnose. These fluctuating symptom patterns include allergic-type responses and non-specific symptoms ranging across the cardiovascular, endocrine, gastrointestinal, dermatologic, and respiratory systems. Chronic diseases and lifestyle choices may influence mast cell dysregulation and overall immune system activation. Identifying potential antecedents and triggers of mast cell activation is an important clinical step for determining the impact of this activation on a patient’s medical condition and for developing a treatment plan that supports both structural integrity and a healthy immune response. On this episode of Pathways to Well-Being, we welcome a pioneer in mast cell disease research, Dr. Lawrence B. Afrin to discuss recent advances in the literature and provide new insights on treating this complex disorder.

Пікірлер: 362
@angelalowe6165
@angelalowe6165 Ай бұрын
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
@lovesilk1
@lovesilk1 Ай бұрын
I am so sorry :(
@mkykta9140
@mkykta9140 22 күн бұрын
Sorry for your loss. By you sharing his story, his memory continues. Thank you.
@sarahb.6475
@sarahb.6475 8 ай бұрын
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.
@liaevans9776
@liaevans9776 8 ай бұрын
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 ☹️
@melissafarrugia9531
@melissafarrugia9531 7 ай бұрын
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.
@daniellerandall6486
@daniellerandall6486 6 ай бұрын
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 .
@daniellerandall6486
@daniellerandall6486 6 ай бұрын
@@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 .
@dkasper3267
@dkasper3267 6 ай бұрын
Especially if you are a woman. Anxiety is the number one go to when they don't know what is wrong with you.
@Esirre
@Esirre 8 ай бұрын
40:15 the problem is most doctors are triggered by self-diagnosis
@wormwood8191
@wormwood8191 2 ай бұрын
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!
@wormwood8191
@wormwood8191 Ай бұрын
IMO They can't stand the idea that a patient knows more than they do.
@Yazzie101
@Yazzie101 Ай бұрын
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 !!
@Duzykutas
@Duzykutas 4 ай бұрын
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.
@onewink
@onewink Ай бұрын
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.
@melriini8280
@melriini8280 Ай бұрын
Gaslighting is big with general drs I’ve found.
@melriini8280
@melriini8280 Ай бұрын
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. 🙄
@Duzykutas
@Duzykutas Ай бұрын
@@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.
@onewink
@onewink Ай бұрын
@@melriini8280 I'm thinking you'll have much better luck with a functional dr.
@OldLadyViejita
@OldLadyViejita 5 күн бұрын
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
@sharlene4mylife 4 күн бұрын
Is there a doctor that assisted you in finding what probiotic you needed? I’m at 4 foods, severely underweight, and terrified.
@OldLadyViejita
@OldLadyViejita 4 күн бұрын
@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!!!
@lisaburkhart9092
@lisaburkhart9092 6 ай бұрын
HOW MANY on here had Covid Which set off MCAS which they never had before??? This happen to me and a friend of mine.
@hosamel-kady9583
@hosamel-kady9583 6 ай бұрын
That’s me
@dkasper3267
@dkasper3267 6 ай бұрын
Covid or one dose of Vax or both who knows
@ad6417
@ad6417 5 ай бұрын
Yep
@vidviewer9727
@vidviewer9727 4 ай бұрын
Not jabbed had covid experiencing some of these symptoms especially with vision and anxiety
@lisaburkhart9092
@lisaburkhart9092 4 ай бұрын
Me and a friend of mine.
@aurorealis3249
@aurorealis3249 4 ай бұрын
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
@staceypollack6526 4 ай бұрын
Doxycycline apparently helps this along with h1 h2 antihistamines and histamine diet. Can’t get a doc to prescribe it for me
@npc_retired
@npc_retired 4 ай бұрын
I was prescribed prednisone a couple days ago and ended up in the ER from the reaction to it
@wormwood8191
@wormwood8191 2 ай бұрын
Keep trying. Eventually you'll find one.
@insertmyidentityhere
@insertmyidentityhere Ай бұрын
@@staceypollack6526 Antibiotics destroy the gut and body, genius. Stop being lazy and get to your root cause.
@wormwood8191
@wormwood8191 Ай бұрын
@@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.
@andeechristian9436
@andeechristian9436 Жыл бұрын
This guy is awesome! He just described the past 20 years of my life, doc attitude included! ❤
@marciesalkowski8139
@marciesalkowski8139 7 ай бұрын
kind of disheartening and comforting at the same time ❤
@janetc4992
@janetc4992 2 ай бұрын
I bawled when I first watched his Mast Cell 101. He was describing 30 years of my life and with such empathy
@MichaelMerritt
@MichaelMerritt Ай бұрын
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.
@lovesilk1
@lovesilk1 Ай бұрын
@@MichaelMerritt $6K???? Nothing like exploiting the desperate. Wow
@suebell7281
@suebell7281 Жыл бұрын
Thank you Dr. Afrin for sharing your extensive knowledge on this. We sufferers out here really appreciate you!
@Yazzie101
@Yazzie101 Ай бұрын
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!
@laurasmith1831
@laurasmith1831 Жыл бұрын
I’ve been using colostrum, I found this has dramatically dropped the symptoms. So much to learn with this disease.
@jrman413
@jrman413 Жыл бұрын
Still good?
@laurasmith1831
@laurasmith1831 Жыл бұрын
Yes, symptoms still dramatically reduced!
@jrman413
@jrman413 Жыл бұрын
@@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?
@jrman413
@jrman413 Жыл бұрын
@@laurasmith1831 Holy shit, how fast was the relief?
@laurasmith1831
@laurasmith1831 Жыл бұрын
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.
@theangrytiredzebra
@theangrytiredzebra 6 ай бұрын
We need to talk about the neuro effects too
@PINO-is-back
@PINO-is-back 5 ай бұрын
Totally right
@jessamyn-rosie755
@jessamyn-rosie755 4 ай бұрын
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
@PeachesandMoss
@PeachesandMoss 3 ай бұрын
My brain has melted.
@wormwood8191
@wormwood8191 2 ай бұрын
I agree. My short term memory is totally shot. Cbd was somewhat helpful for memory. There are many mushroom and supplements to try.
@kileyfoxhall3041
@kileyfoxhall3041 4 ай бұрын
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 :)
@charis808
@charis808 4 ай бұрын
please look into the carnivore diet. It's the only that's helped me
@rangerdoc1029
@rangerdoc1029 6 ай бұрын
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
@SuperJudy1949
@SuperJudy1949 4 ай бұрын
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.
@Needless2say
@Needless2say 3 ай бұрын
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.
@tomsale5142
@tomsale5142 2 ай бұрын
​@@Needless2saydo you have heds to I have asperger's ADHD fybromyalgia CFS we can't stand stress chemis etc
@tomsale5142
@tomsale5142 2 ай бұрын
So true though like for myself when we have asperger's ADHD heds we can take less than general population I have fybromyalgia CFS
@tomsale5142
@tomsale5142 2 ай бұрын
​@@SuperJudy1949what are your symptoms
@avgejoeschmoe2027
@avgejoeschmoe2027 5 ай бұрын
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.
@chloethemessenger
@chloethemessenger 4 ай бұрын
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.
@chantellucky4565
@chantellucky4565 4 ай бұрын
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…
@charis808
@charis808 4 ай бұрын
please have your daughter look into the carnivore diet! It's the only thing that's helped me with my histamine issues
@mikewalker691
@mikewalker691 4 ай бұрын
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 .
@npc_retired
@npc_retired 4 ай бұрын
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
@invisiblegypsy1328
@invisiblegypsy1328 8 ай бұрын
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.
@user-tw1zl1yh1q
@user-tw1zl1yh1q 8 ай бұрын
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
@tammystempky5709
@tammystempky5709 6 ай бұрын
What do you take to active DAO? Thank u
@chantellucky4565
@chantellucky4565 4 ай бұрын
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
@invisiblegypsy1328
@invisiblegypsy1328 4 ай бұрын
@@chantellucky4565 Saccharomyces Boulardii Probiotic. 10 Billion CFU of S Boulardii. This is the only thing that agrees with me.
@realtheresamarshall
@realtheresamarshall 3 ай бұрын
@@tammystempky5709 Look up the Seeking Health brand
@kenttorres9465
@kenttorres9465 7 ай бұрын
Great interview. Great guest!
@liaevans9776
@liaevans9776 8 ай бұрын
Thank you for the video!
@monevaluation4716
@monevaluation4716 7 ай бұрын
Amazing talk. Thank you.
@annierichards7367
@annierichards7367 Ай бұрын
❤ Doctor Afrin is Loved ❤ Thank you
@chaddavis6877
@chaddavis6877 8 ай бұрын
i have this thank you both!! she is gorgeous. i could look at listen to her all day
@RunningWithSauce
@RunningWithSauce 9 ай бұрын
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.
@NitaJain
@NitaJain 9 ай бұрын
Did you get a bone marrow biopsy for the diagnosis?
@RunningWithSauce
@RunningWithSauce 9 ай бұрын
@@NitaJain yes I’ve had 6 of them at various points now.
@francescoschettino5726
@francescoschettino5726 8 ай бұрын
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
@blessedlittlepaws
@blessedlittlepaws 7 ай бұрын
Was your baseline Tryptase over 11?
@RunningWithSauce
@RunningWithSauce 7 ай бұрын
@@blessedlittlepaws yes 48
@Yazzie101
@Yazzie101 Ай бұрын
Omg this dr us so right! They give 4 different types of tramadol and one I react to different manufacturers.. they buy the cheapest 🤷🏻‍♀️
@jacobfamily4761
@jacobfamily4761 9 ай бұрын
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.
@kathy-ht3fi
@kathy-ht3fi Ай бұрын
Thank you so much for the great information and Dr. Afrins weath of knowledge of this subject. ❤
@zephomalunga5251
@zephomalunga5251 Жыл бұрын
🙆‍♀️ 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....🙆‍♀️🙆‍♀️
@suebell7281
@suebell7281 Жыл бұрын
I think I may have this also. May I ask your symptoms?
@rangerdoc1029
@rangerdoc1029 9 ай бұрын
50 years of suffering here.
@aboveaverage4296
@aboveaverage4296 9 ай бұрын
Amazing Doctor! 👍🏻
@Needless2say
@Needless2say 3 ай бұрын
Thank you for valuables info.
@rossanajoubert4881
@rossanajoubert4881 5 ай бұрын
Excellent thank you!
@CaptLou7556
@CaptLou7556 4 ай бұрын
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.
@constanzaocampo5910
@constanzaocampo5910 8 ай бұрын
Is there a list of doctors you could share who are trained to treat MCAS?
@SuperJudy1949
@SuperJudy1949 4 ай бұрын
I would like to know this also!
@madcapmodular8147
@madcapmodular8147 3 ай бұрын
Check out The Mast Cell Disease Society website
@pfp359
@pfp359 2 ай бұрын
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.
@harmonyhavencoaching
@harmonyhavencoaching 29 күн бұрын
There is in the Netherlands, but not sure for other countries
@judsonbates1359
@judsonbates1359 13 күн бұрын
Depends where you are in the world.
@funzeevanzee
@funzeevanzee 8 ай бұрын
Amazing doctor.
@patrickwilliams600
@patrickwilliams600 6 ай бұрын
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 ?
@sarahtheorme
@sarahtheorme 8 ай бұрын
Patience and humility :-)
@KA-pr1xt
@KA-pr1xt 3 ай бұрын
Thank you for validation... I also have EDS and pots... 43 before any doctor took me seriously.
@shiarafigoni1464
@shiarafigoni1464 3 ай бұрын
Lyme, bartonella, contrast dye
@marylandu.s.391
@marylandu.s.391 9 ай бұрын
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!
@beautifulwaterfall222
@beautifulwaterfall222 4 ай бұрын
Were you exposed to mold or heavy metals before it started?
@marylandu.s.391
@marylandu.s.391 4 ай бұрын
@@beautifulwaterfall222 No metals or mold…that I’m aware of.
@MarthaFellows66
@MarthaFellows66 2 ай бұрын
I feel you! In the 80’s my allergist did a scratch test, then laughed, shrugged, and said, « It is like reading Braille. »
@juliemiscera267
@juliemiscera267 2 ай бұрын
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.
@Mythichealth
@Mythichealth Жыл бұрын
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?
@blueyedglances4960
@blueyedglances4960 8 ай бұрын
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
@janetc4992 2 ай бұрын
Oh my goodness. I thought my 30 plus years was a lot. Love to you
@blueyedglances4960
@blueyedglances4960 2 ай бұрын
@@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 ❤️
@didoesyoga
@didoesyoga 6 ай бұрын
What are the markers to look for in a clinical lab for the mass cell elevation?
@melwhitehead4881
@melwhitehead4881 Жыл бұрын
So whats the treatment?
@holyspacemonkey
@holyspacemonkey 5 ай бұрын
So interesting about the archived biopsies being re-examined. 31:00
@velocitygirl8551
@velocitygirl8551 8 ай бұрын
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.
@debbiejones6654
@debbiejones6654 7 ай бұрын
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.
@tomsale5142
@tomsale5142 2 ай бұрын
​@@debbiejones6654as is also linked to ADHD my friend has both but no pain now I
@wormwood8191
@wormwood8191 2 ай бұрын
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.
@gilliani.4328
@gilliani.4328 7 ай бұрын
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.
@beautifulwaterfall222
@beautifulwaterfall222 4 ай бұрын
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.
@tomsale5142
@tomsale5142 2 ай бұрын
​@@beautifulwaterfall222do you have fybromyalgia symptoms
@jfouts1979
@jfouts1979 9 ай бұрын
How can I get Medicaid to cover going back and re-testing pathology samples? / biopsies
@dessi777
@dessi777 8 ай бұрын
What are the markers to check for diagnosis? You mentioned 10.
@artsiecrafty4164
@artsiecrafty4164 3 ай бұрын
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.
@aftonbricker9414
@aftonbricker9414 8 ай бұрын
Look into alpha gal !! On set by a tick bite. There’s a direct correlation with people who have alpha gal and MCAS.
@gjop-xm2xe
@gjop-xm2xe Ай бұрын
What type of dr tests for this and what are some of the other drugs other then h 1 h2
@megangallaher4011
@megangallaher4011 6 ай бұрын
I would do anything to improve the quality of life for someone I have in my life suffering from MCAS.
@PINO-is-back
@PINO-is-back 5 ай бұрын
I suffer of it! 😢
@janetc4992
@janetc4992 2 ай бұрын
I get that!
@Peace4globe851
@Peace4globe851 7 ай бұрын
Will il17 inhibitors help with mast cell activation? I think more data is coming out supporting the use of IL17 inhibitors. Any input ?
@sarahb.6475
@sarahb.6475 8 ай бұрын
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.
@wormwood8191
@wormwood8191 2 ай бұрын
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.
@Needless2say
@Needless2say 3 ай бұрын
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.
@Amber4
@Amber4 6 ай бұрын
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 ...
@insertmyidentityhere
@insertmyidentityhere Ай бұрын
Thats not getting to the root problem. A healthy body should be able to eat a variety of foods.....
@sharlene4mylife
@sharlene4mylife 4 күн бұрын
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!
@MishaLee
@MishaLee Ай бұрын
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.
@drz1093
@drz1093 2 ай бұрын
I wish this long conversation had at least described what to expect, what to look for on a patient presenting this condition.
@janetc4992
@janetc4992 2 ай бұрын
Dr Afrin wrote a book. And his Mast Cell 101 video is helpful!
@blessedlittlepaws
@blessedlittlepaws 7 ай бұрын
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)🤦🏻‍♀️
@blessedlittlepaws
@blessedlittlepaws 7 ай бұрын
@@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?
@blessedlittlepaws
@blessedlittlepaws 7 ай бұрын
@@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.
@blessedlittlepaws
@blessedlittlepaws 7 ай бұрын
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.
@blessedlittlepaws
@blessedlittlepaws 7 ай бұрын
@@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.
@annacastellano4512
@annacastellano4512 7 ай бұрын
@@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.
@johnson41658
@johnson41658 7 ай бұрын
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 😢
@blessedlittlepaws
@blessedlittlepaws 7 ай бұрын
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….
@onewink
@onewink 2 ай бұрын
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.
@johnson41658
@johnson41658 2 ай бұрын
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 😪
@melriini8280
@melriini8280 Ай бұрын
Mcas has increased 10 fold since Covid.
@melissab8653
@melissab8653 5 күн бұрын
Of course it has 😱
@DL-rl9bd
@DL-rl9bd 15 күн бұрын
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.
@Star5dg
@Star5dg Ай бұрын
How to treat?
@margaretdowling-et3zc
@margaretdowling-et3zc 5 күн бұрын
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 😊
@aminaaliomar1674
@aminaaliomar1674 6 ай бұрын
Oh my gosh how can I see you I have mcas been misdiagnosed for decades with Hypermobility elders danlos syndrome
@jessamyn-rosie755
@jessamyn-rosie755 4 ай бұрын
You could have the mast syndrome issue which is causing the other issues
@StudioMod
@StudioMod 2 ай бұрын
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).
@tomsale5142
@tomsale5142 2 ай бұрын
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
@tomsale5142
@tomsale5142 2 ай бұрын
​@@StudioModdo you have ADHD autism to ime awaiting sleep apnea muscle pain worst symptom nowadays in ldn
@StudioMod
@StudioMod 2 ай бұрын
@@tomsale5142No, I don't have autism or ADHD.
@cheri7054
@cheri7054 6 күн бұрын
How expensive is the testing???
@anneharding3917
@anneharding3917 5 ай бұрын
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.
@karend.9218
@karend.9218 2 ай бұрын
MCAS and covid/vax. I think it’s a real big problem.
@melissab8653
@melissab8653 5 күн бұрын
Huge health went down hill
@marciesalkowski8139
@marciesalkowski8139 6 ай бұрын
I tried quercetin and am now trying berberine🎉
@tammystempky5709
@tammystempky5709 6 ай бұрын
Is the berberine and quercetin helping g
@marciesalkowski8139
@marciesalkowski8139 6 ай бұрын
@@tammystempky5709 yes definitely!
@audreylgreen5502
@audreylgreen5502 3 ай бұрын
He never named specific labs to ask for to detect elevated levels of the triggered mediators ?
@Needless2say
@Needless2say 3 ай бұрын
Mold deregulates glutathione production in which case toxins can build up. At some point the bodys alarm systems go off.
@insertmyidentityhere
@insertmyidentityhere Ай бұрын
Mold almost killed me. My digestion completely stopped. I thought I had colon cancer.
@daniellerandall6486
@daniellerandall6486 6 ай бұрын
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.
@zeckendreck
@zeckendreck 6 ай бұрын
i did water fasting for 4 days ... but it chanced nothing
@daniellerandall6486
@daniellerandall6486 6 ай бұрын
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 .
@zeckendreck
@zeckendreck 6 ай бұрын
yes ... i was tested a little positive on gras ... but if you have leaky gutfor many years allergie test work not like this ... @@daniellerandall6486
@Reaper_thecreaper
@Reaper_thecreaper 9 ай бұрын
Hey Dr. What is best for dizziness and or vertigo and brain fog. Got it really bad. After eating bacon and canned fish.....I'm take h1 and h2 quercetin and turmeric and vit b complex. And mushrooms complex. Just got bad vertigo and dizziness. Any suggestions....❤
@audreyhepburn8633
@audreyhepburn8633 9 ай бұрын
Probiotics
@chrisdecaminada2886
@chrisdecaminada2886 8 ай бұрын
I had gotten an antibiotic from a pharmacy when I needed a refill I went to a different pharmacy the pills were a different color then the first one and that's when the problems began
@SweetOsoka
@SweetOsoka 7 ай бұрын
Not to eat those foods? Pork by itselve high in histamin.
@wormwood8191
@wormwood8191 2 ай бұрын
I didn't have this problem until my kidney was attacked by the mcas. Afterwards I had all these issues until I lowered my phosphate. I had to eliminate all dairy except cottage cheese. Hope this helps. Also some improve with seabands normally used for seasickness. Find online or at Walmart or dive shops. Didn't help me but I recommended it to a girl and she got her life back!
@TheMallyjoe
@TheMallyjoe 11 ай бұрын
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.
@lauriekline178
@lauriekline178 10 ай бұрын
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.
@maranatha8148
@maranatha8148 10 ай бұрын
Personally, no don't get it. 🙏
@sorenkierkegaard3
@sorenkierkegaard3 9 ай бұрын
I have treated patients whose symptoms began and others who flared with covid 19 shots.
@sarahb.6475
@sarahb.6475 8 ай бұрын
I am eating 3 foods. I don't dare get any shots! So no dont do it.
@TheMallyjoe
@TheMallyjoe 8 ай бұрын
@@sarahb.6475 what 3 foods are you eating?
@olderandwiser127
@olderandwiser127 22 күн бұрын
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.
@daisyduck1689
@daisyduck1689 6 ай бұрын
My doctor told me it's not worth investigating, as my main concerns are fatigue and muscle weakness. I have inflammation on my blood tests, and medicine for this helps with energy. I've been very sick for 21 years. Should I just leave it at that? I'm 28 F with PCOS and autoimmune (lots of other symptoms). I'm not too bad with allergies, and any rash I have had has gone away. One rash I had for 2 years went away with treatment. I don't usually have rashes. I feel like I've already seen all the doctors, so should I leave it at that? I wouldn't know how to go about investigating or treating this on my own. I'm 32 mins into video currently. Thank you
@merritcherry8022
@merritcherry8022 3 ай бұрын
Never give up
@janetc4992
@janetc4992 2 ай бұрын
It would not be a good idea to just leave it at that and accept where you are because it can keep getting worse. I've been sick for over 30 years and for most of those years it was debilitating but I was semi functioning been doing things. Now for the first time I'm suddenly having major food allergies and reacting to almost everything. You want to get yours and as much control as possible and keep your histamine low down so you don't keep getting worse and it doesn't move from system to system in your body
@beanoneya
@beanoneya 8 ай бұрын
So realistically, getting diagnosed is nearly impossible? I've been taking oral cromolyn sodium for years, and all the symptoms, and still no dx.
@swingingfordearlife
@swingingfordearlife 8 ай бұрын
Seems to get diagnosed via array of symptoms often, but types like mastocytic enterocolitis can be diagnosed via biopsy I believe
@Redwood14
@Redwood14 Күн бұрын
What chromolyn sodium do you use ? Thank you
@MishaLee
@MishaLee Ай бұрын
But what’s the root cause? Can we not ‘reverse’ this somehow?
@sarahb.6475
@sarahb.6475 8 ай бұрын
My troublesome filler is CORN which is in everything! 😢
@tomsale5142
@tomsale5142 2 ай бұрын
2hat are your symptoms
@wormwood8191
@wormwood8191 2 ай бұрын
You should be on a fresh food low histamine diet like fodmap or scd diet.
@harmonyhavencoaching
@harmonyhavencoaching 29 күн бұрын
Corn is one of my biggest triggers too!
@harmonyhavencoaching
@harmonyhavencoaching 29 күн бұрын
And coffee
@tomsale5142
@tomsale5142 29 күн бұрын
@@harmonyhavencoaching do you have muscle pain
@aminaaliomar1674
@aminaaliomar1674 6 ай бұрын
Where is he located
@janetc4992
@janetc4992 2 ай бұрын
New York
@Noble-man1972
@Noble-man1972 6 ай бұрын
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 ...
@ClaireChaker-qr8ty
@ClaireChaker-qr8ty 5 ай бұрын
Did it contain mnra?
@Noble-man1972
@Noble-man1972 5 ай бұрын
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 ...
@staceypollack6526
@staceypollack6526 4 ай бұрын
Doxycycline apparently helps this along with h1 h2 antihistamines and an antihistamine diet I can’t get a doc to prescribe this
@sashaw.8231
@sashaw.8231 2 ай бұрын
Doxy? How does Doxy help with H1 & H2, I’m dealing with all of this and this is the first I’ve seen anything about Doxy. Can u elaborate?
@tomsale5142
@tomsale5142 2 ай бұрын
​@@sashaw.8231Doxycycline is the only antibiotic that helps with central sensitisation mcas is a part if central sensitisation check out Dr taulbaum s book from.fstigue to fantastic imebin ldn for pain
@hayd9785
@hayd9785 2 ай бұрын
Could ashwagandha help with MCAS?
@tomsale5142
@tomsale5142 2 ай бұрын
It helped me with anxiety so yes
@hayd9785
@hayd9785 2 ай бұрын
@tomsale5142 ive been using it for about a week, and noticed a reduction in anxiety related symptoms already
@tomsale5142
@tomsale5142 2 ай бұрын
@@hayd9785 I take nettle garlic to with ldn vitamin c are you hypermobile
@user-ek1gn7mj7o
@user-ek1gn7mj7o 6 ай бұрын
All diagnoses are clinical. Testing either supports the clinical diagnoses or does not support the clinical diagnoses . Testing does not make a clinical diagnosis true or false.
@jedg4746
@jedg4746 8 ай бұрын
Regarding the benefits of taking colostrum discussed below, is there a link between the increasing prevalence of MCAS and babies not being breast-fed, especially in the first week of life? Quite a bit of desktop research required to look into this possibility. But it would be consistent with the increasing numbers of MCAS, and it’s appearance in the West since baby milk formula was invented. When? There used to be no choice and everyone got colostrum when they were born.
@juliemonk8946
@juliemonk8946 7 ай бұрын
I was a breast fed baby and still likely have MCAS.
@candacestevens4446
@candacestevens4446 3 ай бұрын
I breastfed my first for 1 year and my next two for two years each.. I believe they all have MCAS.. but the one who only fed for 1 year has MCAS the worst. So possibly you’re onto something!
@tomsale5142
@tomsale5142 2 ай бұрын
Could be in some depends on the body makeup IE autism ADHD etc
@SweetiePieTweety
@SweetiePieTweety 9 ай бұрын
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.
@blessedlittlepaws
@blessedlittlepaws 7 ай бұрын
I believe one day it will be labeled as a disease. They just haven’t gotten there yet.
@user-vk4sm5ue3d
@user-vk4sm5ue3d 3 ай бұрын
I can only eat a few things without getting sick. Will I ever be able to eat normally again?
@wormwood8191
@wormwood8191 2 ай бұрын
If you have regular mcas diet should be helpful. I put several posts about expanding my diet above.
@432hzlovefrequency-truthinside
@432hzlovefrequency-truthinside 2 ай бұрын
What foods trigger mast cell activation ------- These include but are not limited to: Monosodium Glutamate (MSG), alcohol, shellfish, artificial food dyes and flavorings, food preservatives, pineapples, tomatoes & tomato based products, and chocolate. While these foods commonly trigger a lot of patients, they may not be an issue for everyone. People with mastocytosis have an increased risk of developing a severe and life-threatening allergic reaction. This is known as anaphylaxis. The increased risk of anaphylaxis is caused by the abnormally high number of mast cells and their potential to release large amounts of histamine into the blood. Is mast cell an autoimmune disease? Mast cells are important in innate immune system. They have been appreciated as potent contributors to allergic reaction. However, increasing evidence implicates the important role of mast cells in autoimmune disease like rheumatoid arthritis and multiple sclerosis.
@joycelafleur8598
@joycelafleur8598 13 күн бұрын
Lyme and co-infections and mast cell ?
@timmyschannel5
@timmyschannel5 2 ай бұрын
Anybody try chaga mushrooms?
@mindfulgardener5039
@mindfulgardener5039 6 ай бұрын
It's not a disease. It's a mal adaptive stress response. You need to bring your baseline down and recalibrate. I fully recovered from Mast Cell Activation syndrome. Took me 2 years. No medication or supplements or avoiding foods.
@pristcaroline
@pristcaroline 6 ай бұрын
Hi! What did you do to recover? Stress management only?
@marcolara2677
@marcolara2677 6 ай бұрын
Hi! Would you explain more please?
@tigertalks1567
@tigertalks1567 5 ай бұрын
And then you don't tell people how you did it so until you tell us it's a lie?
@onlyonearmy2521
@onlyonearmy2521 5 ай бұрын
Following
@staceypollack6526
@staceypollack6526 4 ай бұрын
Please explain.
@daniellerandall6486
@daniellerandall6486 7 ай бұрын
So do you think trauma has anything to do with it ? Like almost being an empath . If we find ourselves in a situation that we don’t like ie , the sun , it would make out eyes hurt you then get headaches, vomiting then your genes remember it ! Then when you do it again again and again it’s going to get worse . Same with food Ie gluten , skin sensitivity, digestive issues , headaches, nausea , so again your genes remember that negative reaction which causes a reaction. I think therapy would help cognitive behavioural therapy Go see an osteopath Like you said it has to be tailored and unfortunately the national health don’t have that time to delve that deep .
@tomsale5142
@tomsale5142 2 ай бұрын
TMS Dr schubiner says cbt us no good insight syco.i have asperger's ADHD heds genes for it ultra perfectionist
@charis808
@charis808 4 ай бұрын
the carnivore diet is helping my histamine issues
@insertmyidentityhere
@insertmyidentityhere Ай бұрын
Lmao, been there, it is actually making it WORSE in the long run. It depletes DAO, you will develop high histamine and react anytime you eat any other food. It wipes out all the good bacteria in your gut that feeds off prebiotic fiber. Health is being able to eat a variety of food.
@topchic7475
@topchic7475 2 ай бұрын
Oh boy! Could this guy get any more despondent. 😩 We need more information here. You let him roll right past the ‘which treats’ question by just putting out one marker that’s not even all that relevant! Then nothing but doom and gloom. Not sure why you put this interview out there I just feel more fed up about the fact I’ve probably had this ‘syndrome’ virtually since birth and there’s absolutely zero I’m likely to be able to do about it. I had to give up at around 40 minutes in, sorry.
@Alexander_Rice
@Alexander_Rice 3 ай бұрын
I realize this is geared Manley towards medical personnel, but as a patient, I don’t want to see someone so bubbly, happy like it’s a party when it’s such a debilitating daily struggle for some
@susanphoenix74
@susanphoenix74 10 ай бұрын
Good video but I just can't listen to her voice. Sorry
@tigertalks1567
@tigertalks1567 5 ай бұрын
He is depressing
@tomsale5142
@tomsale5142 2 ай бұрын
He probably has asperger's with his ittelegence in the matter which gives you a monotone voice
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