Mast Cell Activation Syndrome: More than “just allergies”

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

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

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.

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,

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!

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.

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.

You know you have MCAS when people tell you..... "you're just allergic to life"...... 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

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.

Great informative webinar, thank you so much ! 💞💫

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.

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.

Learning so much from this- thank you SO MUCH!

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.

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.

Thank you thank you for all the amazing information!

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.

She is great !!!

great info!

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!