Medical Minute Mast Cell Activation

Dr. Gaudiani discusses Mast Cell Activation/Mast Cell Dysfunction in patients with eating disorders.

[SB-uyjv]

I was diagnosed with this with Long Covid. I’m on multiple antihistamines and mast cell stabilizers so I can function better. I can eat pretty normally now too. Not fully. Like, gluten and other foods will trigger reactions like fatigue and lethargy, sneezing, tongue sores, distention, and GI issues. It’s been both fascinating and terrifying at the same time. Thanks for shedding some light on this rarely mentioned medical condition. We’ve been floating alone out here for a few years now.

[lavender-ocean]

I have MCAS and am trying to be in recovery from my ED. I was in out and the hospital and treatment centers for 12 years. I believe I truly trained my body to become allergic to food, and the malnourishment caused whatever genetic predisposition I had for MCAS to come out and wreak havoc. I feel like I am dying every day, and I am so tired of this. Not to mention I’m struggling just not to relapse. Thank you so much for being here.

[ItsMeKelso]

@ Gaudiani Clinic I appreciate your reply, i understand now that you are NOT saying that MCAS its self is eating disorder related.
But patient with an eating disorder can have mast cell issues. I was not aware that this was specifically an eating disorder channel. Which is why it's so important that when those with authoritative power provide a clear message about such things.
The two are very different.when you have conditions such as MCAS, POTS, EDS, we are pretty much at the mercy of doctors,
in my experience doctors are more likely to listen to other doctors as opposed to their patients,
one is having issues with mast cells that stem from a mental illness and is eating disorder related. Would require a different type of therapy related to a mental illness.
While mcas is chronic disease due to genetic or mutated diseases, with no mental illness.
Personally I myself and some friends with MCAS have been accused of depression, eating disorders, anxiety, when in reality we carry certain genes ( c-KIT)or lack the (NF1 )gene activating ( GTPase) which relates to (MC9) making us prone to mast cell diseases.
Thank you for your time

[mauve]

I don’t truly know what you’re implying when you say eating disorders and mast cell activation syndrome. If you are mentioning AFRID then this would totally make sense if a long history of foods have caused reactions and such therefore causing a fear of eating. Mcas goes along with Connective Tissue Disease many of us have had GI symptoms our entire life which causes distrust. I have the trifecta of Ehlers Danlos Mcas Dysautonomia along as full GI dysmotality, I was also accused of having eating disorders due to my low body mass but I never had a hard time mentally with food or my body image. In fact I loved food and have consistently tried to find ways where I could eat it safely to sustain me. Unless the patient has a history of having an ED we should not state there’s a correlation between the two. It harms us when doctors assume our GI issues are directed from disordered eating.

[ashockablack]

Can this cause body odor???and what doctor is best to diagnose this?

[ItsMeKelso]

The way you present this mast cell disease seems that you associate it with an eating disorder. How ever mast cell activation syndrome it's self is NOT eating disorder related. Due to the severity of MCAS it requires a mast cell specialist, because of the complexity of the disease requiring multiple different doctors
to manage mcas
because this disease effects,
gastrointestinal, cardiovascular, dermatological, respiratory, and neurological systems.

Please do not take offense to this, this is not an attack toward you and ur channel, I am just speaking about the reality of the condition and understand it quite well because I myself have it.

Mast cell activation syndrome is a chronic immunological disease that can be genetic it can also develop as secondary disease due to autoimmune diseases such as lupus.

Mast cell activation syndrome also correlates with other syndromes such as POTS and EDS.

This disease is more than histamine issue related, it's constant anaphylactic or near anaphylactic episodes,
This disease is difficult to manage with medications because the triggers change, The severity of the reaction also changes, unfortunately antihistamines arent so simple...there are multiple types of anti-histamine in tablet and liquid form as well as anti-acid such is Pepcid and Zantac which also work as an anti-histamine for the stomach .. There are mast cell stabilizer such as cromolyn oral sodium and Ketotifen ...
but that doesn't mean all or any will work.

This is literally a serious condition that is much more than just skin rashes, swelling flushing and digestive issues...you're quite literally going into anaphylactic or near anaphylactic episodes !

the progressiveness of the disease worsens in time.
While some patients might find some relief with medications many are debilitated by the severity of it. Some people even die because of mast cell complications.

The reason I'm so adamant about this is because I myself have mast cell activation syndrome, much is misinterpreted about it and doctors as well as people often State partial facts about the condition or speak about it in a manner that may give people a different idea about what it is and how it affects people.