Root Causes & Treatment of Mast Cell Disease

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.

[sarahb.]

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.

[angelalowe]

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 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

[Esirre]

40:15 the problem is most doctors are triggered by self-diagnosis

[Duzykutas]

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.

[warrenpeterson]

Today I am diagnosed with some form of MCAS and Mastocytosis. I had to sell my business, haven't worked, and have lived as the "Man in the Bubble" ever since. It all started 12 years ago with a stick of red licorice and a body full of hives. My disease quickly progressed to be diagnosed as histamine intolerant within a month. Then six months later to be allergic to sulphites (sulfites). This would be deemed my "trigger" a few months later. All sulphites had to be eliminated from my diet including any high histamine products such as tomatoes. Today I live on fresh meat of any kind and cruciferous vegetables such as broccoli, cauliflower, green lettuce. I do cheat but not often. Now, here is the reason I'm posting. After 10-years of lockdown/isolation I now feel great! Combined with the nutritional changes I've made I then found a drug that has changed my life. It's called Sodium Cromoglycate (Nalcrom) and I take it twice a day in conjunction with Cetirizine. My dietary changes and the combination of drugs has literally changed my life. I hope this information helps someone else.

[disabilityadvoc]

This guy is awesome! He just described the past 20 years of my life, doc attitude included! ❤

[kellio]

I had similarities happen to me 2 years ago after 1 year of chronic work stress. Doctors couldn't figure out what was wrong. I had to do my own research. I decided to go on a whole foods, nutrients dense anti-inflammatory diet to get rid of the inflammation and give my body what it needed to fix itself. I also focused on foods that supported my nervous system. I took a few months off work and eliminated all stress. This saved my life.

[aurorealis]

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.

[sbee]

Thank you Dr. Afrin for sharing your extensive knowledge on this. We sufferers out here really appreciate you!

[OldLadyViejita]

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!

[lisaburkhart]

HOW MANY on here had Covid
Which set off MCAS which they never had before???

This happen to me and a friend of mine.

[zephomalunga]

🙆‍♀️
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....🙆‍♀️🙆‍♀️

[constanzaocampo]

Is there a list of doctors you could share who are trained to treat MCAS?

[RunningWithSauce]

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.

[laurasmith]

I’ve been using colostrum, I found this has dramatically dropped the symptoms.
So much to learn with this disease.

[invisiblegypsy]

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.

[theangrytiredzebra]

We need to talk about the neuro effects too

[kileyfoxhall]

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 :)

[kellio]

Doctors were no help. I did my own research. Fixed my symptoms with an anti-inflammatory diet and stress elimination. I asked my last doctor what could have caused all those symptoms. He dismissed it and said its irrelevant now. What?! He just missed the opportunity to possibly help so many other patients if what I did to help myself could help them. I will never stay with a doctor that dismisses my legitimate concerns again. I will continue to educate myself on health so I can be my own advocate.

[CaptLou]

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.