Mast Cell Activation Syndrome: More than “just allergies”

[glamcat]

My self-diagnosis of EDS with MCAS was confirmed today by a geneticist. Feels like the first day of the rest of my life.

[SweetiePieTweety]

This woman is a modern day HERO! If only the “masses” in the medical and psychological world would submit their egos of uninformed education to this message. So weary of being told it’s all in my head. Suicidal weary. A life destroyed due to medical ignorance and arrogance. Thank you Dr. Maitland

[chironOwlglass]

I hope that the Ehlers-Danlos Society puts a lot of effort into communicating this information with physicians around the country, because most doctors consider any highly-educated patient a hypochondriac. The more I know about MCAS, the less doctors take me seriously. I am stuck on 100% OTC medications because there is only one doctor in the entire state of Minnesota who treats MCAS, and he is three hours away and won't even run the 24 hour urine test on me because it's not practical due to the distance.

[traysea]

I have been suffering for years with so many food sensitivities, chemical allergies etc you name it for years. My skin breaks out into rashes so bad that I bleed. Inflammation constantly to the point that my face morphs on a drop of dime into someone I don't recognize. Heart palpitations, dizziness, brain fog, I've have low calcium, iron deficiency - corrected via multiple infusions. RNP high, ANA positive... and doctors do not know what to do with me. I was told by my Immunologists that I do not have MCD because anaphylaxis is not involved, but I disagree.

However, I cannot find another doctor in my area AT ALL to help me. I feel so depleted. I've been to rheumatologists, dermatologists...No-one seems to know anything about this disorder/disease.
I appreciate you posting this video & your bringing awareness to this disease more than you know. My body has taken such a toll on the chronic inflammation that I am beginning to just accept that until I am dx with some dreadful disease that I will not get the help I need.

[sallydiavatis]

I think this is one of the greatest reasons why the modern medical system is failing us!!! Each dr. is only interested in their little part of the body so people with multiple issues never get to put it all together into what is really going on. I have long thought that whatever is going on in my body is systemic and listening to this lecture and others about mast cell issues has convinced me that this could be what I’m dealing with. All the weird physical problems that I’ve been dealing with are explained and tied together in a beautiful bow!

[DrLisaDeG]

You know you have MCAS when people tell "you're just allergic to am I right? Doing much better with H1 and H2 antihistamines and a low histamine diet but it is VERY restrictive. Am waiting on an immunologist for better treatment. Daily doses of Vit C also help me greatly too and peppermint tea

[kelvinbeels]

Wow your expertise on this is seriously good, as you mention it took you 10 years to gain this knowledge and it clearly shows. It's amazing how you incorporate so many different parts of the body to find a solution to mast cell activation, more of a whole body approach. Thanks for taking the time to make such an extremely informative webinar. I doubt one could find someone with more knowledge on this subject 10/10.

[JanetSmith]

No one in the medical community takes me seriously. I've had problems since 2009. I only recently learned of mast cell activation. Going to try quercetin. Idk what else to do to find a doctor who will listen to me. Finding a doctor like this is like finding a needle in a haystack.

[alexweiss]

I think I have this to a lesser degree. When I was 18, I was bitten by a tick and contracted Lyme disease. I spent the next couple of years, pretty sick. It started with GI issues. Chronic constipation that was set off by a myriad of food intolerances. Severe gluten sensitivity. Soy intolerance. If I ate at a Chinese restaurant, I was sick for days after I'd eat. I eliminated gluten and changed my diet. I lost weight and started feeling better after I "recovered" (or so I thought) I'm in my mid 30's now and I'm experiencing a lot of very weird symptoms relating to MCAS. I'll have different symptoms that usually take 3-4 weeks to resolve. A couple of years ago, I started drinking a lot of Kombucha tea and eating Kimchi (both fermented and high in histamines). I was putting my body in shock. I developed globus pharyngis. It's the sensation of having a lump in your throat (though nothing's there). That finally went away, but I would notice random different parts of my body being affected by different things. There'd be times where I'd have severe insomnia which nothing I took, helped that in any way. Then I'd have periods of having really irregular heartbeat/palpitations. Then that would go away and I'd have abdominal bloating or diarrhea. Once that resolved, I might have bladder issues or skin rashes. These ailments were never at the same time. They'd move around, appear and then leave as quickly as they came. I still have severe seasonal allergies and allergies to dust mites. I'm currently dealing with random numbness and tingling in my extremities. Occasional muscle fasciculations (twitching). I've started to eliminate high histamine foods and take anti-inflammatory supplements such as Quercetin, Vitamin C, Curcumin, and Luteolin,

[dgsmith]

You know what I'm tired of? Anaphylaxis. It's not fun. I'm also tired of being told to take antihistamines and carry an epi pen, followed by a total lack of interest on finding a cause. Six decades of gaslighting by men doctors.

[matilda]

I’ve been dealing with asthma and chronic hives for about eight years now. Recently my symptoms skyrocketed. Without any control, the hives get bad enough to trigger suicidal thoughts because living under constant unrelenting itch 24/7 is a fate worse than death. After looking more into MCAS I’ve realized my allergist is doing the absolute bare minimum, borderline nothing to help me at this point. Thank you for the education. It’s given me the insight that this isn’t as mysterious as my previous doctor had lead me to believe. And that there are other options to try before going on immunosuppressants. Thank you

[georgiaalice]

I got my tryptase blood test done today for MCAS. I have had 2 hospitalisations from 2 anaphylactic attacks in 5 months. Hoping to get to the bottom of this soon!

[cg]

Ok, finally watching after it sat at the top of recommends for weeks.
Funny how algorithms tend to diagnose me better than my docs.
So, thx youtube . lol.

[micuchua]

Thank you so much. You have gave me hope to continue the search for my health. With this information I am ready to talk to my doctor. Thank you from the bottom of my heart.

[rhondalmcintosh-tipton]

Three years later, the medical "professionals" still have no clue. Patients are tortured physically/emotionally/physically/etc., shoved down the proverbial rabbit hole, neglected, and insulted to boot. Insurance companies use this to reduce costs.

Horse poop. There's no reason for patients _not_ to have pharmacophobia and white coat syndrome. I've waited almost 59 years to meet a real medical professional in regards to Ehlers-Danlos and/or any comorbidities of it.

Thank you for your voice of sanity.

[tbell]

Excellent presentation. The comprehensive information, visuals, analogies and context is phenomenal. The responses to questions were specific and detailed enough to provide a roadmap to seeking solutions.

[ericisave]

Wonderful presentation. A great service to folks who are clueless about healthcare, not because they are dumb but mainly due to all the conflicting information out there on the internet ( and a lack of health insurance ). Here in Canada we have universal health insurance, sounds great but it's not (unless you require urgent care), huge wait times in the ER for most folks and not enough doctors to meet the demand.

[kimcissell]

I was fortunate that my first anaphylactic reaction to an insect sting happened in a medical facility. Immunotherapy and future insect stings almost killed me. I learned about mast cell disorders

[rachaelhaines]

Am 48, and was so allergic to everything that I had allergy shots 2x per week from 6 months of age until 12 years of age, as well as daily allergy pills during that time. I was also diagnosed with ADHD and ADD...but I'm now realizing I was pretty hypermobile as a kid. Now my 24 year old daughter is having tachycardia, pre syncope, and digestive issues. She passed the 5 point marker for EDS by her rheumatologist. This video definitely helps to put the pieces together. Thank you.

[dawna]

Is there a transcript of this webinar? I have listen and watched a few times. It's very informative! I would like to print this out for my doctor so that it is easier for her and I to refer to it as we decide on the next step.