Top 7 Mast Cell Activation Syndrome Triggers You Should Avoid
ฝัง
- เผยแพร่เมื่อ 2 ส.ค. 2024
- Mast Cell Activation Syndrome (MCAS) is a very serious, often overlooked condition. About one in four people with the disease cannot work or participate in normal day-to-day activities. It is a disease that affects people of all ages or gender, but one funny thing about it is that it is often unrecognized and possibly remains undiagnosed in many cases.
MCAS is a group of diseases involving the immune system. When the triggers occur, antigens are raised inside the body, which might result in itchiness, for example. But this also leads to a histamine cascade, which causes contraction of the respiratory vessels. Then blood vessels dilate and result in gastric acid secretion.
Many people with MCAS can have very serious life-threatening reactions such as anaphylaxis. Typical symptoms include itching, headaches, brain fog, fatigue, heart palpitations, hives, shortness of breath, gastrointestinal problems, wheezing, low blood pressure, anxiety, and, very typically, flushing or swelling, which appears on the face or body.
According to the American Academy of Allergy Asthma & Immunology, Mast Cell Activation Syndrome is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis - allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing, and severe diarrhea. High levels of mast cell mediators are released during those episodes.
For these reasons, it is therefore important that you are very much aware of the top seven underlying factors that can contribute to Mast Cell Activation Syndrome and avoid them completely so you can live a healthier, happier life.
READ MORE ON THE BLOG HERE: www.drcameronjones.com/blog/t...
#mastcell #MCAS #mastcellactivationsyndrome - วิทยาศาสตร์และเทคโนโลยี
![เกิดใหม่ทั้งทีก็เป็นสไลม์ไปซะแล้ว ซีซั่น 3 - ตอนที่ 65 [ซับไทย]](http://i.ytimg.com/vi/4EsinscQCfs/mqdefault.jpg)
A lot of Covid long haulers are experiencing this currently, absolutely miserable.
It’s unpopular… I had an anaphylaxis reaction to the J&J Vaccine but after a two-week recovery my long COVID went away. Following COVID and vaccine, I have more allergies and tummy issues than ever. I’m now allergic to bee stings too.
@@marshmallow1488 watched a long Covid video saying that some of the covid cells can get into the gut and stay there!
I started with urticaria prior to getting Covid but during the height of the pandemic.just started out of nowhere when I was eating a shrimp dish. I swore it was the shrimp and stopped going near shrimp and other seafood. Then got covid around the omricon. My covid symptoms were not as horrible like but lost sense of taste or smell and horrible chills. But after that dissipated i noticed issues that I never had prior other than the horrible urticaria. Not sure if dealing with after effects for covid for months later triggered other slowly developing health issues. I know get these horrible chest pains that are not matching with my cardiologist testing, the severe dizziness and flushing in the morning and gastrointestinal issues that I never had in my
Life. What is worse no one at work believes me bcs of suffer general anxiety and panic disorder which is now also getting worse. Long story short I am tired of getting the “hears some allergy meds to quell the urticaria” something cause this so why do medicql docs not want to investigate why a previously normal person suddenly suffers these issue?
@@bucii01 a combo of Benadryl and melatonin worked to stop my allergic reaction to my immune system. Good luck I hope you feel better soon
@@bucii01 have you looked into low histamine diets and natural anti histamine?
My allergist told me that MCAS didn't exist.
The health care system here in the USA is so shitty.
It obviously exists.
The health care system has not been able to help me. They just collect my money.
My allergist brushed it off when I brought it up. I stopped going to doctors. They would just take my money and solved nothing. USA medical system is awful.
The allergist is clearly not educated in hematology, neuroendocrinology. MCAS is way more complex than just elevated histamine and allergies. It took me 7 years to figure out I had the disease, and 7 more to be fully educated.
@Lady Die ok
NHS UK Generally just the same
Landlords never want to deal with mold in my experience.
Same here. Does not matter what one says. rain gutters would truly be helpful in taking the water away from the basement.
A metal core dental crown caused mine. Had the tooth pulled and within 15 minutes my septum lost the feeling of giant marbles inside of it. 2 weeks later I'm able to eat fruits and veggies again. The life long chronic constipation is gone! Turns out that metal crown was causing so much histamine in that spot it ate the bone and opened a hole into my sinus. My body is so messed up from the constant metal exposure
I’m glad you got the tooth out, I bet your smile came back 👍
That sounds more like an infection.. but maybe an allergy. Interesting.
@@jopainting1668 There was infection. 40 year long infection. The root of my molar was huge and my sinus on that side is abnormally large. The roots of the molar grew into the sinus cavity and caused a chronic sinus infection. Everything I ate since I was 16 had been leeching into the sinus cavity through the channel the tooth root opened. The crown on that tooth was the final piece in the hell I was living with. I spent 2021 thru early 2023 struggling to not die from my throat swelling closed continuously. Having the tooth pulled saved my life
@@tjkasgl Holy cow! What a story! My daughter got fluoride treatment at dentist on August 28. Starting the 29th she started to. become more sensitive to food than she has ever been! A week later later she stopped eating bread because she suddenly became gluten intolerant! 2 weeks later she couldn’t eat anything, went to ER twice with anaphylaxis like symptoms! Always dizzy and fatigued and flushing red face! Lost like 20 pounds! Docs still trying to diagnose but I have no doubt she had MCAS! Thoughts?
@@liaevans9776 fluoride is a neurotoxin. The mouth is one of the most absorbable tissue areas in our bodies and fluoride absorbed through the mouth goes directly to the brain. As I stated in my other response she needs to detox. Don't just buy one claiming it can do fluoride as there are many scams out there
I have dealt with this a number of years now. I worked at a place that had environmental issues, esp mold. I had numerous symptoms - rashes, flushing, stomach issues, & one eardrum was so messed up that my mother sounded like a man on the phone if I had the receiver on that ear. One day I was heading to my allergist to get my shots, started chewing some gum, & I went into anaphylaxis while driving. Regular doctors couldn't figure it out, so I found a good functional medicine specialist who ran loads of tests, found a ton of underlying things, diagnosed me with adrenal fatigue & worked hard to help me. I still have environmental illnesses & since getting a private office is difficult & having people take my doctors' notes to eliminate toxins in the environment seriously, working from home was a huge blessing. I never want to work in a building with people again. Thx so much for this explanation, it makes so much sense & gives me more info to look into!
It took me 4 years to get diagnosed and was a nightmare. At my worst when the AC or furnace would kick on it would cause anaphylaxis symptoms' from the airflow of dust/dander. I take cromolyn sodium, zyrtec, hydroxyzine, montelukast, famotidine, and low dose prednisone daily. And avoid all mast cell degranulation medications and substances. Have been stable for a few years now.
@@Reloadeezdid you become sun sensitive on the cromolyn sodium? How is that treating you
I read iodized salt or table salt is a degranualtor (spelling?) in a comment but I cannot find that anywhere in a search. Dyk if that’s true?
How are you feeling these days?
I worked this out myself fifteen years ago.
Staggered by the supposed experts response to this.
Thank you for spreading the word.
We need better treatments quick...what's wrong with these researchers???
If the pharmaceutical companies don't tell them that it exists and here's the wonderful expensive medication for You to give to your patients and we'll give you some bonuses for prescribing it, and here's rhe protocol for the patients,, in the doctor's minds it's all make believe.
Unless Big Pharma stands to make big bucks by coming up with a treatment, there's no incentive to even mention it.
Omg mold... I’ve been saying this for years. Here in Va the weather has changed with so much more humidity on top of water damage in my last two homes, including current (landlord also won’t do much, have a slow ceiling leak on my bedroom). Having Omicron for last 3 months just researched and learned this syndrome (in recent unpublished study by Nicola Haseier video “Help for long covid... foods to avoid”) can highly increase long covid. I’ve learned more tonight than last 26 years going to Dr who can’t or won’t help. Thank you.
Yep that's how I got it mold
Thank you so much 🙏🏼 well put together and easy to understand. It's finally making sense to me. Thank you! New subscriber 👋🏼
This is the best video on MCAS I’ve seen that directly pertains to my son, who has been living at my house for 2 years to get out if mold. You’re describing him!!
Dr. Jones, this is the best explanation of MCAS I’ve seen so far. I have MCAS so thank you for putting it in an easily understandable way.
Low nitric oxide sibo
I really appreciate your videos, Dr. Jones.
Such practical and helpful information.
Thank you! 👍👍👍
Here in the states unless you get the Health Department involved and engineer reports its almost a losing battle. This is where one has to own their own home. Thanks for sharing, very interesting. Prayers to the journey.
Thank you for sharing!
My triggers are: Having an empty stomach for a longer time and than eat too fast, ibuprofen and aspirin, drinking carbonated soft-drinks (like Cola), drinking alcohol with high percentage, having an infection, getting a vaccine, too much pollen in the air, exercising too hard (even sex). I get terrible pain where my stomach is (stomach is ok), incredible thirst for water, dry mouth, heat flashes, hives, asthma, itching... It isn't fun.
Usually it is not the vaccine but the preservatives (chemicals) in the vaccine cause the reaction.
I've recently watched a bunch of videos on this topic and it's amazing how lacking they are. This one is top tier
Actual List of Top 7 Triggers starts at 7:56 or so. Everything before that is intro and background info.
Update: thank you for this video, Dr. Jones. It’s very helpful and informative for both patients and providers. Keep doing good work by educating others about these overlooked and often misdiagnosed symptoms and illnesses. You are saving lives!!
(Even if these illnesses are not typically life threatening in any immediate way, patients endure such significant suffering and loss of functional capacity that many eventually consider and/or commit suicide. )
Thank you😂
Thank you - appreciated.
My savior
Thank you so much!
So VERY Helpful !!!
Nicely done!
I have genetic factor called hereditary alpha tryptasemia- you are so right on these triggers. No allergies, here, but was working with compost and had huge inflammation episode with angioedema a few days ago.
Thank you. Especially for tying it into mold, etc.
Best explanation of this syndrome that unfortunately I developed
I was diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome). With this rare genetic disorder: 1 out of every 15 people that have hEDS, also develop Cranialcervical Instability (CCI). Those that have CCI and hEDS, unfortunately always also have MCAS. I also have POTS which is very common. I used to have Idiopathic Intercranial Hypertension, another common comorbidity, but it has since been resolved suddenly and unexpectedly on 10/4/2019. (Thanks God!)
I also have been diagnosed with MCAS and am in the process of changing my own diet. I’ve been sick since I was a kid and getting worse. (I’m a 37 year old woman now). Not the only one in my family that can, “write on their own skin” either!😏 (Another tell-tell sign of MCAS).
I live in a permanent neck collar these days. But, the collar is absolutely essential and became *the* diagnostic tool, (for me anyway), that absolutely proved my diagnosis of CCI and hEDS. I can breathe better, eat better and sleep better. I’m in far less pain and discomfort. I don’t mind the collar now, it’s part of me. I feel much better wearing and sleeping with it on than without.
I’m starting low dose naltrexone, Benadryl twice a day and aggressive PT to strengthen my neck and back muscles. I’m hopeful to have even more and improved less pain, increased energy and problems in general moving forward. (LDN is known to improve inflammation and help your immune system fight back).
God bless and I wish you all the best in your pursuit to find answers.
Are you fused
@@amgnico Im so sorry that I’m just now seeing this! I never got a notification that you commented!!
No, I’m not fused. My body is responding really well to PT. I go 2 1/2 hours each time twice a week.
I’m only in a thin soft fabric-type neck collar as needed, and about 50% of my day is spent out of it. Once on a blue moon will I have to put on my hard collar on. I went 37 years being undiagnosed and it wasn’t till this past year (2021) did I start to notice the pain and neurological symptoms.
Are you fused?
I have all the same as you..
@@LadyInWhite741 I do peptide treatment to fix my CCI
Wow me and you are the same ..im totally with you on the collar its life changing ...Dont forget we are Zebra strong x
I got MCAS as a small child after early trauma. I also have Ehlers Danlos Syndrome and have had Hyperadrenergic POTS since my late 20's. My main issues are migraines, flushing, sweating, nausea, and high bp/hr. My first allergy was gluten. I used to get severe stomach issues as a little kid and it's only gotten better since changing my diet and taking proper supplements. I have had a multitude of stomach issues. I was nauseated for 22 years daily and it got so bad I had to take Gravol daily. It was caffiene. I can drink decaf.
I've had a few traumas in my life and that has made the MCAS go crazy at times. I didn't know I had it until last year (I'm over 50). I developed Addison's Disease and later Hypothyroidism. My symptoms were similar to Lyme.
Severe pain and the flushing was so bad I couldn't go in indoor public places for fun, like restaurants and stores and people's houses.
In January 2020 I got Covid. Then long covid. And my symptoms got so bad I came close to death a couple of times.
After starting treatment last year, I got my hearing back, my nose unplugged for the first time in my life, all my stomach issues are so much better, chronic pain is a bit less, my blood pressure and heart rate normalized for the first time in 25 years (My bp was 187/147 and resting hr was 115). The flushing and sweating have gotten better. I was also bipolar and now I am not.
But the best thing is, I am in full remission from Addison's Disease. And no secondary adrenal failure. I am off steroids for the first time in 12 years which is almost unheard of. It's been since April of this year. And no thyroid disease anymore, either.
My main triggers are fragrances (my laundry soap and makeup was the cause of a lot of the migraines), heat, the sun, chemicals (chlorine I can handle), preservatives, dyes, opiods, gluten, dairy, meat, alcohol,
exercise and STRESS.
My treatment so far: Benedryl, Claritan, Pepcid AC, Quercetin, NAC, Clonazepam (mast cell stabilizer), B100, B12 injections (I have PA), C, E, Omega 3, Magnesium in various forms, D, K2, B1 and B2, Oil of Oregano, Supergreens, plant based iron, folic acid. I have malabsorption issues. I get the Meyers Cocktail vitamin IV every few months as well or after an illness or if I'm in a bad flare. That was really helpful when I had long covid the worst.
Most of my long covid symptoms have improved as well.
My doctors strongly believe now that my Mom had MCAS and died from it. It attacked her heart, lungs and kidneys.
This was a wonderful video. Thank you so much. Every point you make is true, I have lived it.
Take care.
Valuable comment. Thank you.
Thank you for sharing your story. Glad it's been better.
I do the Elevate IV Therapy which helps so much. I was doing it weekly until the doctor raised the issue with me having problems with blood clotting that's when I stated another deep dive into studies. You see I have Hashimoto's Thyroiditis but things didn't make sense with just this because I also have GA (Granuloma Annulare) with the skin and I know its a MCAS, I also have Fibromyalgia , I had a Hysterectomy when I was 35, and EBV has been diagnosed which is involved in all this yes I have MCAS. I started Antihistamines which have helped so much stopping the Anaphylaxis and hives and started Quercetin and still trying to find a Probiotic that does not make me sick. Thanks for your comment it truly was enlightening.
yikes, definitely not folic acid!!!!! Do folATE instead. Methylcobalamime, but cyancobalamime (sorry, typos...brokem key)
I started to have severe MCAS symptoms recently. My only child, a 4 year old, passed away earlier this year. Then I relocated to the Midwest, where I've had severe allergies (pollen). I always had a low degree of MCAS symptoms but could totally live with it and never dug deeper even though I knew something was wrong. Once I moved here, I started having problems breathing, my pollen allergies got worse and worse to the point where if I eat honey my throat will close, I had really bad peripheral neuropathy and it comes back if I get sick at all or if I have a bad histamine release, and I almost can't go outside because once I start to breathe in the bad pollen coming from the farms that are harvesting, my body almost wants to shut down and I will start going into fight or flight mode. I started doing some things to soothe my nervous system, am on H1/H2 blockers, singulair, various nose sprays, and supplements to support my adrenals, nerves (sphingolin, lion's mane, and vitamin D), and a bunch of other stuff like quercetin and DAO. I'm hoping I can eventually live life again, but if it doesn't get better soon I will have to relocate again which is not fun right after just setting up this house, but it seems like pollen is my main trigger, with heat, food, stress, and NSAIDs also being triggers.
California
Sorry to hear of the passing of your child 🙏🏼
Sorry about your loss :(! Do you notice symptoms are worst around your period?
I am so very sorry for your loss.
@@liaevans9776I think you’ve hit on something there. I see so many anti-immune issues in women. Wonder if our hormones make us particularly susceptible? My mom suddenly got a terribly painful case of atopic dermatitis on her eyelids (!) out of the blue after menopause. She tried everything to get rid of it - stopped wearing make up, stopped using anything with fragrance, changed diet) but it never went away. I myself just randomly had a terrible case of hives up and down my inner arms earlier this year - Benadryl and cutting a stresser out of my life stopped it. I am a couple of years into menopause. I’ve got to believe that my fluctuating hormones played a part in this random break-out.
I’m about to cry 😖 I’ve been living in horrible conditions for years & I just came across the answers to remedy this or at least begin.
did it solve your problem?
Thank you so much.
This was good!!
This is what I’ve had for years. I live in my car away from my husband of 38 years. Never been diagnosed except for my MCs. Nerve damage from mold. My life has been wrecked. Have no Drs that understand this.
yea same.. no doctors take me seriously at all. IT's so depressing when I go to the doctor and they just look at me like i'm nuts! i start to lose hope.
@@RevampEmily I stopped going to doctors.
be strong..
yes! I had umfortunately bilateral carpel tunnel surgery because of this :( I did't know. Mold is wicked...it was at my work and home :( ...durimg which I got severe covid....all played together
well done for this clear and concise explanation.may doctors out there dont go the extra mile to tell there patients the detail list of the symptoms and just supress the problem. May God bless you in all your efforts..I have recentlly moved to an asian country and now my daughter has hives.What is the way forward.Being to several doctors soem said eczema some said hives.You get so confused with all this
thanks
Thank you very, very much!
I just today went to get tested for mast cell. I have many of the symptoms you talk about lately, the gastrointestinal problems, the itching. I am allergic to mold, trees, grass every plant, bees, red ants, fertilizer, have had 5 mold sinus surgeries, allergic to lidocaine, all caines, aspirin, Tylenol, pain meds, psych meds, antibiotics, sulfa, iodine, soy, dairy, eggs, nightshade foods, beans, nuts, peanut butter, processed foods, food dyes so after all of this we will see if I have mast cell. I have high IgE. I also have osteoarthritis. I am a health freak for over 50 years. I have C677t and many other DNA health related issues of hypogammaglobulinemia. Lately, my fatigue and anxiety have been an issue. I take so much steroids for my allergies as it is bad here in Texas.
I’m blaming it on COVID too. I e never been sick in my life and now I almost lost my life like three times. I wasn’t sure what was going on until they diagnosed me with this. It’s been pretty scary to me. I’m afraid of being alone now due to this stupid syndrome.
The severity of covid is greatly impacted by several vitamin deficiencies. NAC is very beneficial for many things. But definitely have your vitamin D checked. Some people also have a issue that makes them not process Vit D properly and causes them to need much higher does then is normally recommended. Maybe also talk to some about if there would be a benefit to you from Hydroxychloroquine.
@@Not2daysatan i was actually put on vitamin D.
@@analyzgmz5267 definitely consider NAC. Quercetin is a solid choice too for many things.
Hopefully you didn’t get the ‘poke.’ If you did you may want to go on a strict detox asap to remove the nanotechnology, graphene and heavy metals
@@effigy8620 doctors are so useless. At least mine are. I have to be doing my own research. But I was thinking about a detox for sure.
Thank you
Thank you so much for your video releases. I have my face appearing once again but my doctor said we will send you another special doctor. Would you like attachment the picture?
Thanks again
This was very interesting and very clear. You steered a clear course between being too simplistic and too technical IMO
You state that "your care provider"-(doctors always seem to think everyone has a regular "care provider" they can have a leisurely discussion with at any time, a complete delusion anyway..) you say "your care provider" will "know all about mast cell activation syndrom". I dont think they will. I was very interested to hear about the connection between red flushes in the face and this problem. I have had gastroenteritis, for want of a better word, for 30 years and such red flushes and NO care provider (Im talking of about 5 doctors, three dieticians one health practitioner) has ever shown any interest or knowledge or made any connection between the two. I fear your opinion of health practitioners in general is much too high!
This is exactly the best explanation. I have this nightmare of syndrome. Caused by a mold on my windows and in the ducts of my air system. The mold that was found was “ALTERNARIA”. I have been bedridden for 6 years now. I can’t get out of the house We have made so many changes and also my dr. Recommended me to do DNRS brain training. Thank you so much
My deepest sympathy. I hope you get better. This makes my symptoms look trivial in comparison. Again, get better soon.
DNRS is great.
@@robinlillian9471 can you get your windows open and a space heater to compensate if cold? that is what i do for moldy appartment. sometimes in corners w/o strong air flow, i feel immediately weak and fatigued, so i go to open window, take a dozen breaths of outdoor air, and feel much better. good luck.
You WILL overcome this!
I am almost 100 percent certain I have this! I have had symptoms of this for years now but doctors wont take me seriously. I also have alpha gal and ever since my second bite i got worse. in 2021 i was down to 2 foods but then started zyrtec and was able to add a lot of foods back, now i struggle with my weight and binge eating cause i feel scared i wont be able to enjoy foods again. You never know if and when you will have a reaction and it's very scary. Heat is a huge trigger for me as well as foods, a lot of scents, and stress! Stress is the worst trigger i think of all of them. I have had a stressful life growing up and deal with anxiety and ptsd on top of it all.
Go you dermo first have they take a blood test of your tryptase level and will prove to them you do.
Have you tried CBD oil? It has saved our lives and made our alpha-gal manageable. He was starting to have to use an inhaler and now he doesn't have to use one at all
I don't think Zyrtec is safe for alpha-gal by the way I believe it has lactose in it. That was one of my first mistakes. A lot of medications will have magnesium stearate which is unsafe for alpha-gal also, besides the obvious gelatin and glycerin products they add to medications. I've had doctors prescribe stuff that could have killed my son and I, knowing I have alpha-gal. I would double-check the Zyrtec just to be safe!!
@@talkeetnatattoos it does have lactose but I’m way worse off of it sadly. I want to get off all antihistamines but my body starts going nuts. I’m losing my mind because I am reacting to so much and sometimes I will eat the foods that I react to because I have no choice. Allegra was the one that was alpha gal friendly but it started working against me
@@talkeetnatattoos no but I really want to try that. Which one would u recommend?
My primary triggers are heat, exercise and NSAIDs (aspirin, ibuprofen, etc.). It's bizarre and because of that it took me many years to really register the connection even though I reliably have allergic reactions to these things.
Heat causes unstable mast cells to degranulate, and anything that heats up my body, including outdoor heat, baths and cardiovascular/aerobic exercise activates my mast cells. Twenty minutes into a walk, my nose will begin to run every time, and then my skin gets prickly, turns red, and then come the hives and wheezing. If I don't cool down, my vision goes dark, tinnitus gets very loud and I become disoriented and feel faint. Cardiovascular exercise brings all of this on more quickly, and it has also twice caused my left arm to suddenly swell up so much that I couldn't bend it at the elbow, and occasionally I have Parkinson's-like tremors when this happens. Everything gradually goes away after I cool down. This happened for about a decade before I realized it's an anaphylactic reaction. Thankfully, my airway never swelled shut completely, but when I do cardiovascular exercise, I do begin to cough, to produce a lot of excess mucus and when I swallow water, I cough it up probably because of a constricted throat. It's pretty scary.
NSAIDs, even a single 'baby aspirin,' cause a severe gastro reaction, setting off mucus overproduction, acid reflux and other digestive problems for 2-4 days after I take the painkiller. I can only take Tylenol/acetaminophen/paracetamol without allergic reaction.
People with mast cell activation disorders have a lot of triggers, but exercise and heat are common ones. Some people with these disorders actually use aspirin (under doctor's supervision) carefully to stabilize their mast cells and others like me are too allergic to it to risk trying this as therapy.
Most people I've chatted with (mostly online through support groups) who have mast cell activation disorders have a lot of severe food allergies and I don't. I have some intolerances, including dairy, fermented foods, strawberries and sometimes wheat (sometimes not, which seems strange), but nothing like dangerous reactions a lot of people with MCAS and especially mastocytosis have to a lot of foods.
My baseline tryptase level is 16-18, and two doctors have told me I almost certainly have MCAS and not mastocytosis and have said I don't need a bone marrow biopsy to differentiate because my tryptase is high but not as high as it typically is in mastocytosis patients, and my food allergies are limited. Despite the severity of my sensitivity to heat and exercise, which has limited my life significantly, my allergist-immunologist says I have mild MCAS relative to a lot of other people who have it.
Thanks I took am very sensitive to heat. I seem to have to have the temperature neither too cold or too hot. That sensitivity sometimes make me feel vulnerable in Houston weather. Thanks for the info it really helped me.
@@starhawkjohnson7752 Heat and extreme cold sensitivity are very common among people with MCAS. I'm surprised that's not emphasized in this video. I'm always anxious about telling anyone, including doctors, that I am "allergic to heat and exercise" (I break out in hives within 20 minutes when exposed to either) and always explain that if it were not my body, I wouldn't believe it, because I feel like no one will ever believe me. But my allergist-immunologist wasn't at all fazed and he said, yeah, heating up the body destabilizes mast cells, so try to avoid that. But then he put me on an improvec treatment protocol and encouraged me to exercise moderately to see how my body tolerates it, and lo and behold, I've been able to exert myself since then without any allergic reaction!
Thank you for this, I don’t feel alone. It is scary.
@@DavidMichaelCommer hello david, I am on my way to diagnosis and we are considering Mcas, I would love to contact you. Would that be possible?
Especially the stuff you said about heat and being allergic to it is what I recognized. Would greatly appreciate that. thanks
I also am allergic to Advil and all other otc pain meds. A few years ago my feet started to swell after skateboarding or walking. It was usually one would swell and the next day the other, right before I woke up in the morning. Swelling so big I could not walk on that foot. That went on for a while on and off and then I began to get hives, big ones. I fought them off with benadryl until I woke up and scratched my shoulder and it literally swelled in real time to the size of an orange in about 2 minutes. Also I was swelling in my crouch and lips/ tongue. I went to a few doctors and was put on montelukast and Zyrtec. I did that for a while and ate what I wanted, thought I was cured but nope it came back so was given steroids. That helped so I quit all the prescriptions due to horrible side effects to my mind. I was fine after that, until I ate spaghetti and boom I was swollen all over! It was at that point I gave up tomato products all together and have been fine ever since. I'm almost 38 so I guess adult onset allergies are for real.
I went through this exact thing with the mold at my old house I was renting. I wish you were around for me. Finally got out in July and I’m feeling a lot better but I feel like I have a long way to go. I feel bad for the people that live there now. I don’t think they fixed anything :( I asked neighbors to advise them but I don’t know if they will.
Heat, exercise and food trigger my mcas like no other. I get instantly ill and stay like that for weeks. I have Lyme disease since 2012 and after 4 years into chronic Lyme I started to get extreme autoimmune reactions, allergies, intolerances and histamine reactivity. That made everything much much worse and much more complicated. I did have a lot of trauma in my life including at very young age. Also as a teenager I slept years in a mouldy room.
You may still benefit by seeing an ISEAI practitioner, because even though the mold exposure is in the past there are still things that can be done.
Same for me. Heat (and humidity), exercise, nsaids, and specific foods/drinks trigger mine.
Me too! Once a week in the winter I had to clean the black
Mold off of my bedroom wall.
I also have
Lyme for about 15 years. I am pretty much hopeless that I will ever fell normal
Me too have Lyme, mast cell has been hell
Oh, geez! I just got diagnosed with Babesia Microti that’s alive in me (not the antibodies), along with 5 other tick-borne infections, and I was still recovering from mold toxicity when I volunteered at a garden near me, because I was so happy I was feeling better. Now, this, but I’m being treated for it. Are you being treated? Is it taking over 4 years to get Lyme out of your system? I just wasn’t feeling well again and had headaches every day, so I got tested. I hope I don’t have to wait 4 years to feel better. It’s already been almost 20! Plus, I broke my arm. What a mess!
I have this and it's a nightmare!
Same !
I agree, people just don’t get it, how I’ll it can make us feel. People will say you should just have ‘whichever allergy food’ if you’re craving it! I wish it was so simple! 🤷🏼♀️ if I eat gluten or yeast, I’m I’ll for days. My stomach is like I have food poisoning, being dehydration because of it makes POTS worse
@@lilacscentedfushias1852 add diabetes to that (no fault of my own by the way) it's even harder.
@@lilacscentedfushias1852 =(
Microbiology is such interesting science. Fascinating
which doctors thought so too...
I had problems taking medication and many food allergies that went on for over twenty years. I was sent to an allergy specialist and ive got hereditary alpha tryptasemia, MCAS and dermographism and Ehlers Danlos. Ive been on a low histamine diet and should take two antihistamine tablets a day but i cant find one i can tolerate as they all have additives in them. When the mast cells trigger i feel very faint and cant stand up and then my blood pressure goes up dramatically. The worst reaction ive had was to cucumber and to chicory and kale. Theres only one antibiotic i can take and i cant take pain medication, aspirin and Ibuprofen. I thought i was crazy so im so pleased i now know that theres a reason for my symptoms.
When I get overly stressed, my lower lip or tongue will swell. Sometimes I have swelling on either side of the forehead. Was being treated with Faslodex for breast cancer, 4.5 years. Stopped the injections and the rate of edema has dropped off to almost zero.
You sir have likley answered the burning question as to why I experience the symptoms you have described here (and more) every time I get stressed which is often! Interesting stuff. How on earth does one get tested to confirm this diagnosis? Thanks for your time.
Robert, get with your primary physician, but it's an allergist/immunologist who would be able to diagnose. Even if you just had asthma, stress and anxiety can cause an upheaval of symptoms, as well as allergens, and you would need to work with an allergist on that anyway. Good luck!
There is no definitiflce test for MCAS. Other mast cell.disordwrs have test but mast cells that are activated aren't going to show up in blood test or other testing. I was diagnosed with a history of my.likw including ibs since I was 5 and many many other issues including have Ehlers Danlos Syndrome. Please make sure.tou see a Dr who is knowledgeable in this be auae most will say it's not a thing and that they never heard of it and tell you to just take allergy meds.
Have your doctor check your tryptase levels. This is a blood test that can help diagnose mcas.
@@DeadlyCyanide1 There are actually several blood tests and urine tests that they use to determine if you have true MCAS or mast cell destabilization. Both can cause really similar symptoms, but the driving cause is different. Those of us with EDS can get mast cell reactions from "twitchy" nerve cells. Plus, our gut issues can cause degranulation of mast cells. Many of us have full blown MCAS, but there are specific tests done to confirm it. Allergists/immunologists are the ones who have defined the differences and set the diagnostic guidelines. Getting an MCAS diagnosis without those specific blood and urine tests happens and is actually okay. Both versions have many similar treatments.
Gene by Gene also offers a test for Hereditary alpha-Tryptasemia which also has symptoms like mcas and may be part of mast cell disorders.
But definitely a MCAS knowledgeable allergist is where to go first.
I’ve been dealing with systemic reactions in my baby who is 9 months now. She had COVID at 2 months and since then she’s had severe eczema and allergies to most foods.
I am strictly breastfeeding and I can barely eat anything bc everything that has histamine or is a histamine liberator is causing her massive allergic reactions.
I’m starting to get somewhere though bc we had to move down to the basement since she was about 1 month old and there has been water flooding in the bathroom a lot in the past few months. Thank you for this explanation. I’m at my end with this
Water damaged buildings cause so many issues. I pray you can get away ASAP. Mold exposure is so bad. My chronic exposure has cost me so much. 😢
MCAS sometimes comes from hypermobility, specifically hypermobile Ehlers Danlos Syndrome (EDS). That also comes with POTS most of the time, along with MCAS, and sometimes/often: Histamine Intolerance, and other intolerances less often, such as salicylate intolerance, oxalate overload, etc. If you get an itchy mouth after eating olives, pineapple, tomato, strawberry, etc. and feel sick after any fermented/aged/suspended foods, alcohol, spinach, avocado, coconut, etc. you probably have Histamine Intolerance. All of these things I've mentioned stem from hypermobile EDS, for those that have that plus all things mentioned. Check for hypermobility with finger length, wrist circumference, etc.
I didn’t know about this! I am hypermobile and my 13 years old too.
Excellent presentation! Thank you!!
I’m a classic example of mould exposure as I have mcas with many chemical allergies as well as my daughters
Interesting...I've suspected this in my home environment and its quite debilitating, the ability to function or think clearly is severely impaired day to day ....I connected the dots when away from home during winter and hrs later can breathe better, think clearer and feel better. My appetite re turns and my energy improves. I've been taking generic antihistamines to sleep as I'm plagued with insomnia too, but wondering if there is a specific antihistamine designed to combat mold exposure or mold/fungus sensitivities? I would very much Appreciate your advice ~
I always smell a musty mold smell and my sinuses are sensitive and reactive. TY for posting this informative & validating video
No. I suffered mold toxicity/ morgellons. You need to deal with the mold, wear protective gear especially mask. Don't use bleach. Better still pay someone else. If it is beyond repair, move.
I will never live in a house with mold again and I see people who I know suffering but won't even consider that it is the mold in their home.
@@mercyfragilityhumilityligh4262
You're so right, fixing or moving..I'm looking for a new place, its hard to find a home without water damage in my situation. I wish mold resistant homes were available and if I can afford to build a home that's exactly what I will do. Even minor Mold can utterly devastate your health, unfortunately ppl have to experience it firsthand to comprehend the complexity. Cheers to your recovery
If you do not have an ongoing leak, a hydroxyl machine can make a significant difference; it's not a "air cleaner" but actually denatures the spores and mycotoxins. My personal successful experience is with a HiTech machine; I tried a couple that used what they called PCR (?) technology and they did nothing. One well-advertised company using that technology has a class action suit going on.
@@MattAllenTeller
That's interesting...I've never heard of a hydroxyl machine? sounds expensive. Would a leaky roof after a rain be considered an ongoing leak or intermittent? I really appreciate you sharing what worked for you and what didn't, Thank you
@@casperinsight3524 There are things like active charcoal, chlorella bentonite clay and some meds that people use to get rid of mycotoxins in their body. I just started taking the active carbon and chlorella myself a few days ago so too early to say if it helps. Some people take them for months to detox and there are prescription meds too for it.
Hi Dr Jones
Loving your videos. I have finally been tested and found to have a black fungal infection. It has taken me 30 years and a massive infecion that threatened to take my leg to force someone to test me. Is there some way i can contact you to discuss this.
Any help or advice you can give me would be most eelcome.
Thank you for the information you have supplied.
I’m suffering from this. It’s hard for me to do daily activities, such as going to work.
💙my heart goes out to you; it is very hard dealing with an illness that does that 💙 I have Lyme disease and I am going to be tested for MCAS/D as well. It’s crazy. 😞🙏
I'm only 13 and my mom has very high suspicion that I have this. I was exposed to a house with mold (we were unaware of this) and we were there for 2 weeks. Ever since I've been in that house, I have experienced symptoms of MCAS. Looking back my parents have remembered me complaining of symptoms also related to MCAS, but they were never as bad as they have been ever since I have been to that house. However, we are unable to get me tested for this syndrome because the tests used to diagnose patients in my age group are very inaccurate. I have though, found a sort of treatment that has helped me very much. That treatment is acupuncture. Now, I know that might not be everyone's go to option because of the needles, but it has greatly helped me!
I can relate to you totally🌹❤️ my family thinks I’m a lazy person because they can’t understand this “it’s all in my head”. Prayers for you and healing ❤️🩹 your not alone
@@Filthycoffin my supervisor who I thought was an empathic supportive person has questioned my work ethic as I have had issues always early in the morning which kickstarts my panic disorder and have begun to call out more. And literally was received with a rolling of the eyes like I was imagining these very real symptoms
My 28 year old daughter has MCAS. She got it from living in an RV for three years that ended up having mold under the bed. She can only eat a few things even while taking Zyrtec nightly. She struggles with low blood pressure, hives, stomach issues and edema. I’d sure like to see her get better. She has never had Covid or the vaccine.
I have chronic itching...constantly. burning skin, domatographia, fatigue, trouble breathing, frozen shoulder, joint swelling and pain. Tinnitus, constipation, endometriosis, sleep apnea...lots of other things
*Dermatographia
You might want to put Australia in your channel title because I have sooo many comments from ppl from Australia on other channels who are suffering from mcas but they dont know who to see. At least folks could be tipped off that you are physically in Australia. (Unfortunately i wont remember which channels are in which countries..to refer the Australia commenters to...)
I think I have this - I think it may be the underlying cause for my idiopathic small fiber neuropathy. I have seen over 50 doctors over the last 10 years....what is the best way to contact you?
You're the best! I wish I had the money to be diagnosed by you
I've been suffering for 2 years. Currently, as I am typing this. My body is on fire, heart palpitationing, and anxious. But, unfortunately i live in a third world country. And the doctors ovrr hear discredit my signs & symptoms. I'm just managing myself with H1 and H2 medications.
Hope you feel better! I live in America and 98% of the doctors either have no clue about this condition or discredit the this condition, so you are not alone! My daughter came down with this disorder and we don’t have official diagnosis, albeit spending thousands of $$ at American hospitals! We basically self manage just like you by really, I mean really limiting our diet and taking the same H1 and H2 medications!
I live in Arkansas, so set your watch back 50 years then listen. I am 69, on hud. Renters have practically no rights in this state. If you cannot live in that moldy house, you are welcome to move.. if no one can help it is not their problem.. if you withhold rent check,because you want a window replaced before it snows. You have 30 days to get out.. I am too sick to think about moving, but fear this house will be the death of me.. at there any doctors in north east arkansas who know of and understand MCAS. I need help.
i feel for you dear. my apartment is the same. luckily canada is colder but we have had cieling leaks.... i keep a constant flow of air IN one side of unit, and OUT the other side. that way the air is being replenished and mold doesn't accumulate. if i don't do this, i feel horrible. if myhubby gets cold and shuts the window i always know by my sudden feeling of fatigue. he has stopped the air flow. so i have to get up, open window back up, and ask him to crank the heat if he is cold. i don't think he understands. oh well. when i am in a corner ... or bathroom... and feel faint or headachey, i stand by window and gasp for fresh air. it helps! i try to get outside when i can. difficult but i manage a few times a week to get out for a few hours. good luck my friend.
Report them to the city and go all the way up the chain of command if you have too and Get ahold of your House of Representatives, whoever is assigned to your district or county/ zip code.
Dr. .... can we ever get healed?
After covid, my asthma worsened but my allergies cleared substantially. Anecdotal certainly, but I am thrilled.
maybe you started eating better do you think?
Here after taking 💉 detoxing and looking for answers!
Any improvement?
Does everyone with MCAS have elevated IgE? Is it detectable by a blood test? If you fail that test do they rule it out even if you’re ticking all the other boxes?
Yep, I’ve found white powdery mildew growing on my furniture in a heated room with an air brick and wood burning stove (I now leave the stove door open because air can flow better when not in use. The room is too full of stuff and I reckon air is stagnating. It’s away from the sun but the room is heated by a large radiator and no damp ingress. This is troubling!
I have been told to get myself tested for MCAS. My flat is also damp and I am constantly spraying mould killer.
Hepa filters help a lot I change them every two weeks
Taking a PPI for the acid also stops you absorbing your food
I have a very high suspicion I have this! I have Crohn's Disease too. When I went to my GP about this and Histamine intolerance, she laughed at me and said she's never heard of it! She gave me a prescription for antihistamines and showed me the door. I don't know what to do next as I can't afford to go private.
I am so sorry and I am disgusted with and furious at that doctor and all doctors like her. Pathetic, substandard care- and they still get their billing fee and or copay while the patients SUFFER.
Too many doctors behave that way.
I will pray that you get some meaningful help, somehow. Hang in there. You deserve better.
I'm sorry that doctors behave that way . I spent 3 years trying to get diagnosed . I went private in the end but only could afford to see him a handful of times. Antihistimines will definitely help, if you can get a H1 and H2 antihisimine blocker that will help tremendously. H1 ones are Loratdine, cetirizine, levocetirizine and fexofenadin. H2 antihistamines are Ranitidine, cimetidine, niziadine, and famotidine, if a GP can get you on that combo it will really improve your symptoms.
@@armania8008 how did you get diagnosed.?
@@Seeker2400 Hi Nitya, I went to see a immunologist, this is the best person to see as MCAS is a multi system issue that is triggered by the immune system. I did so many tests bloodwork and also physical tests like dermographism ( which means my skin can be drawn on with a blunt object, it's like welts basically). Are you in the UK or USA? I'm in the UK.
@@armania8008 Germany here, Would love to connect with you guys. Let me know
This is my 3rd attempt. I had this. It changed when I started nutritional yeast, zink, rose hip, magnesium, home made sourkraut, a shotglass of ACV with natural or manuka honey with clove tea or cranberry tea as a diluter. I use a burner with rosemerry, lavender , eucaliptus, cloves and oregano in variations. I have an infrared heater i sit in frount of for melatonin. Good luck !
what do you mean by "changed"? Is it completely gone?
I have developed aqua pruritus over the past 5 years. My place is moldy but I had a traumatic experience in 2010. I experience anxiety, stomach bloating with heart palpitations from that event. I have insomnia and sleep apnea which causes hbp. My doctor just pushes pills which I refused. I'm doing keto and IF. I have turmeric and hibiscus and ginger teas. Manage stress levels. Keep hydrated. Have a good sleep. I'm doing yoga and meditation. I walk a min of 3 km a day, I do a bit of weights in the morning as i suffer from fatigue as well. I do lots of stretching and I started doing grounding. Where can I test from macs activation?
My house is over 100 years old, has an unfinished basement, water damage from a formerly leaking roof down to the first floor. And mold growing everywhere.
Molds everywhere!! You must get out ! ( or that I hope you ‘be moved out by now ) and safe somewhere ‘😢
Avoid low oxigen? How the hell should this be possible in a society where we have to wear masks all day long?
Right lol
Masks don’t filter out oxygen.
Yes. I have low oxygen everyday too.
I have something... not sure if it's that or salicylate issues,or dairy.... I have days I feel like my throat is tight. I get scared.
The thing is. I have this. And I'm already miserable k owing its something I can't fix.
I haver hereditary alpha tryptasemia and mast cell activation syndrome, So there is a genetic component related to my MCAS. Just wanted to share,
Do you know how to find Drs that specialize in this? I live in the US.
Try a holistic practitioner- mainstream allergists are helpful but they are pill forward and they to cover the symptoms not cure the cause.
Untreated chronic sinusitis could also be fungal causing the body to react. It can only be removed via surgery. You also need to find the environmental source or it will recur .
anyone having trouble with the blood pressure being high? Meds aren't working at all. No md around here with a brain what this is.
There doesn't need to be an IgE reaction in order for mold to cause MCAS
Exactly the mast cell has multiple receptors ige is just one and iis spcific "only" for histamine each receptor is a switcn to release specific granules as required by the immune system and more broadly by the body. There is too much to list you need a map and it is not fully mapped yet even. The mast cell is one scary beast. I know. It is a cell like uranium as an atom at the very limits of stability and tearimg itself apart. It has too many functions. Evoloution has created a junction box that is unstable.
A friend was struggling with long covid. One annoying symptom was inability to taste and smell. She was away for a weekend and there was a leak into her apartment. Landlord cleaned it up and put an antifungal agent (not sure what, liquid cleaner?). She said her taste and smell came back after the first night back.
i got gastro problems idiopathic hives fibro fatigue feeling of spiders crawling all over the body my neighbours flat upstairs has black mold found it around window and in cuboard i get flushing insomnia severe hive outbreaks im ring dr today to mention all this
My boy is going into his third DVT surgery in five months. The blood clots are getting longer each time. Could MCAS be the cause? Every test from our oncologist has come back negative.
Where are you located? I am desperately in need of help for this and I live in North Carolina. I’ve been to tons of doctors and nobody helps me. I have sores on my face most of the time, can’t wear earrings due to reactions and my exes couldn’t wear condoms because my vagina would burn.
My 2 year old has this, how to help her?
He's right the mold exposure give me high cortisol scarring from lymphedema. Its up uour hormones im also going numb .
I’m sure I have it! Outta nowhere I started having extreme respiratory issues & being a cleaner n also having a little mold in my apartment I’m sure that’s what initiated it??!!! Now I’m having allergic reactions to foods, particularly gluten . I’m hoping my naturopath can figure this out n get me cured. 🙏🙏
Look up the MTHFR gene. It controls detox speed. People with slower detox genetic predisposition + mold + stress = > MCAS. Also do you start working on the MCAS while treating mycotoxins in the body? Or mold first? Then MCAS?
I’m pretty sure I have this but can’t see an immunologist till august, I feel like shit all the time
Hey Dr. I have pots and I believe I may have Mast Cell also. When I get really sick, way worse than my normal pots episode, I break out in a rash and feel like there’s something stuck in my throat. I’ll be sick for weeks (I’m already living a sedentary life, I can’t work or even walk for 5-10 minutes. I have to use a wheel chair everywhere I go).
My primary Dr. Tested my Triptase levels to decipher if I had mast cell. Came back normal. I have read though, that you need to be in the middle of an episode for the test to become positive? Can you help clarify this for me?
Right before I got sick in 2018, I was photographing an abandon building for 3 days, which was likely full of asbestos and god knows what. I also had Mononucleosis at the time. Could a quick exposure like this trigger it?
Thanks very much for any response
You could have had an ms attack
Tryptase is an almost useless for MCAS. I was diagnosed by Dr. Afrin from biopsies, blood histamine, urine histamine, and plasma heparin. Typtase at its worst was only 3.
I don't know if I have MCAS, but since August 2023 I have been going through different horrible symptoms, and after december my life became hell. I can't eat plenty of things because almost everything causes me reactions. My reactions can occur immediatately after eating and for some days. My symptoms include: fatigue, leg pain, low blood pressure, migraine, pressure in the head, chest pain, weird and pounding palpitations, postural orthostatic tachycardia, bradycardia, gerd, bloating, gases, shortness of breath, intolerance to heat or cold, reactions to exercise and minimal physical activity including hypenventilation, palpitations and presyncope. The worst of my symptoms is lethargy, this one happens usually after eating, but I have identified triggers... this lethargy makes me feel as if I am dying, I feel my body's heavy, and I can't even move, I can't properly breath and my cf slows down, I can't keep myself awake, and when I fall asleep I immediately wake up gasping for air, this is horrible when it happens. I have withdrawn foods such as fresh fish, tuna, milk, cheese, yogurt, cereals, corn, sugar, fruits, meat, pork, processed meats, avocado, legumes and even cassava. I had hyperthyroidism for 5 months and now I have normal thyroid levels, but I lost about 9 kg. It is important to mention that I had some improvement when one of my wisdom teeth was removed as it was probably causing the hyperthyroidism I went through. I have one more wisdom tooth to pull out as it is decayed. WHAT ARE YOUR THOUGHTS?
I think the part of the graphic at 6 minutes and 5 seconds that says "IgE response" is wrong. Someone check this and let me know but I myself do think it is definitely wrong and really really bad misinformation to have out there that could lead people away from pursuing this diagnosis because they won't have classic IgE problems.
What about hereditary alpha tryptasemia? There is a gene for you doctor.
You can’t tell women to get their hormones checked and not mention testosterone as well and estrogen etc etc. All of the hormones should be looked at and not just a few.
With respect.
Keep up the great job.
Pozdrawiam serdecznie i życzę miłego dnia
Great information - first I’ve heard of Mast Cell Activation syndrome , I’m almost positive I was highly exposed while in India .. thank soo much - excellent video
If your mast cells are acting properly, then it doesn't matter how many triggers you faced. You can't catch MCAS. Although it can develop through exposures. I was repeatedly exposed to multiple different kinds of mold everyday.
There's a lot of misinformation. While everybody is a candidate for having Mast Cell issues, it is not contagious.
Exposed to what .....mold?
Yes to clarify .. it was mold exposure - understand MCAS is not contagious - I started to have a lot of the MCAS symptoms from that time, itchy eyes, rashes, brain fog, coughs, nasal congestion amongst other feelings which lasted over 1 year.. I’m clear now.
Yea my darn landlord won't do a damn thing for the mold downstairs but wants her rent money tho
Who can I tt about this? I have this at work and apartment.
Could I have had this happen from a vaccine.
I suffered mold toxicity 8 years ago, it took me a number of years to regain my health.
But have been having a lot of histamine reactions since having a vaccine.
Me too
I believe mine came from that as well
I couldnt get diagnosis but was told salicylate n mass cell go hand in hand this needs to change
Is there any hope for me? I believe I’ve developed this after having mono. It needs so much more research :(((
How do you avoid genetic factors?
knowing your relatives have mold sensitivities can alert you to diagnosis, treatment, and avoidance of triggers.