I think the reason folks maybe suggested MCAS to him is because he is Autistic. For some reason that science is only just starting to piece together, autism, ADHD, MCAS, POTS, EDS/hypermobility, and some others, all seem to present together… I’ve had testing done for MCAS, like Dr described in the video, which wasn’t all conclusive but I guess enough that my Dr started me on both H1 & H2 antihistamines, which was helping, but recent stress has caused another flareup and now I have new allergies again. It’s so frustrating to try and explain it because for most people if they have an allergy it’s lifelong, but I’ve had some come and go.
Yes! I call it the constellation. I have it too and was among the many who commented 'mcas?' on Toren's video. I've not yet been tested for MCAS, but we just presume I have it, as I'm AuDHD, have Classical EDS, POTS or something like it, asthma, and multiple types of allergies. Makes me wonder how much food 'pickiness' in ND children may be related to allergies. When I was a young child, orange juice from concentrate gave me an instant bad headache, eggs made me nauseated, and certain fruits hurt to eat. But I wasn't believed. Adults thought I was just trying to be difficult.
I have idiopathic mcas, it took six months, three hospital stays( multiple anaphylaxis) and a ton of tests ( including a bone marrow biopsy and 38 tryptase level during anaphylaxis) to figure out. With very little information available for. So appreciative to have found your account. Awareness is so important, I’ve met multiple doctors and nurses that have never even heard of it. It’s wild.
I have systemic mastocytosis. It’s so nice to hear someone talk about it. One thing that assisted in my diagnosis was a bone marrow biopsy, and my mast cells were shaped incorrectly. Have you seen that ever? I’ve had allergists argue with me about that lol As if I know, I just follow what my doctors say
I have non systemic mastocytosis but I’ve never heard of anyone with anything similar. Mine is urticaria pigmentosa which effects the skin particularly but can cause allergic type reactions. Very hard to find information on mastocytosis
So looking forward to your book! So glad to have this video too because my dermatologist and gynecologist don't really understand it. This video is short enough that I can show them during my appointment
Finally! Information about MCAS. Thank you! Can you talk a bit about duodenum biopsy to count mast cells? This is common with my GI doc who is familiar with mast cell disorders and the impact on the GI tract.
Dr. Rubin, thanks so much for shedding light on rare diseases! I loved that you did a video on HAE, too, and I am really looking forward to your book! I have been going on a years' long journey of trying to get properly diagnosed and finding the source of my symptoms. Could you explain the relationship, if there is any, between MCAS and HAE? Also, where does POTS come into play? And is it my imagination or do many people with these issues also have symptoms of Ehlers-Danlos? Thanks so much for all you do (including your hula dance videos!)
@Dr. Rubin Can you speak on Macrophage Activation Syndrome and if anything can be done about it? Specifically w SJIA with the secondary MAS complication. Thank you!
I suspect that I have MCAS and I had a referral to do that testing for it. But I get "stuck" at the antihistamine" part. As I react to all corn derivitives and all over the counter antihustamines contain corn! And corn is the thing that triggers my bad alkergy reactions! So the paper to do the test at the lab was useless. I am blocked before I start. Plus antihustamines only give me paradoxical reactions! Years ago (like a decade ago when these allergies were first developing) I tried Nyquil. It made me wide awake as a hoot owl. Benedryl made the inside of my throat numb! And a cough drop that contained corn ingredient made gave me a swollen jaw plus it actually made me cough: bad coughing jags for 30+ munutes each time I took one. A script for the test is useless. I have autism, hEDS, allergens triggers Pots - especially corn ones, and have celiac. Basically living on carnivore and avoiding tons of foods / places. Also react to fumes. Food fumes. Perfume. Air freshner. Etc.
I wonder when you have a clear diagnosis. I just have to check my tryptase (is that correct in English language?) once every year which seems to be a little bit less effort to check for mast cell related diseases.
So in the video he flushes over most his face. Obviously he can’t be diagnosed without visiting the doctor, but can someone explain how this flushing is different from say, lupus, or something similar?
The lupus rash is damaged skin, the immune system is attacking the skin. MAST cell activation is an allergic reaction, caused by histamine. Flushing is usually blood flowing to the face for various reasons- it's a neurological mechanism. That's hyper dumbified, but those the primary differences. By looking at the pictures, it's very difficult to tell if it's urticaria (histamine reaction) or flushing. But it definitely is not Lupus, since it resolves quickly.
Wouldn't the inflammatory substances from the mast cells eventually be depleted or dissipated? Only so much can fit in the mast cells, and there are only so many mast cells in the body. So what keeps it all going?
Thanks for speaking on this. It is important that more people are educated on this topic.
Excited to read your book when it comes out. Thank you for breaking down Mast cell activation.
I think the reason folks maybe suggested MCAS to him is because he is Autistic. For some reason that science is only just starting to piece together, autism, ADHD, MCAS, POTS, EDS/hypermobility, and some others, all seem to present together…
I’ve had testing done for MCAS, like Dr described in the video, which wasn’t all conclusive but I guess enough that my Dr started me on both H1 & H2 antihistamines, which was helping, but recent stress has caused another flareup and now I have new allergies again. It’s so frustrating to try and explain it because for most people if they have an allergy it’s lifelong, but I’ve had some come and go.
Yes! I call it the constellation. I have it too and was among the many who commented 'mcas?' on Toren's video. I've not yet been tested for MCAS, but we just presume I have it, as I'm AuDHD, have Classical EDS, POTS or something like it, asthma, and multiple types of allergies.
Makes me wonder how much food 'pickiness' in ND children may be related to allergies. When I was a young child, orange juice from concentrate gave me an instant bad headache, eggs made me nauseated, and certain fruits hurt to eat. But I wasn't believed. Adults thought I was just trying to be difficult.
I have idiopathic mcas, it took six months, three hospital stays( multiple anaphylaxis) and a ton of tests ( including a bone marrow biopsy and 38 tryptase level during anaphylaxis) to figure out. With very little information available for. So appreciative to have found your account. Awareness is so important, I’ve met multiple doctors and nurses that have never even heard of it. It’s wild.
I can’t wait for your book! That’s exciting. I have idiopathic angioedema. I’ve never had anything show up on tests.
Yes, I’ve had idiopathic angioedema since I had Covid in early 2020.
I have systemic mastocytosis. It’s so nice to hear someone talk about it. One thing that assisted in my diagnosis was a bone marrow biopsy, and my mast cells were shaped incorrectly. Have you seen that ever? I’ve had allergists argue with me about that lol As if I know, I just follow what my doctors say
A minor criteria for systemic mastocytosis is abnormal shape of mast cells found on biopsy.
I have non systemic mastocytosis but I’ve never heard of anyone with anything similar. Mine is urticaria pigmentosa which effects the skin particularly but can cause allergic type reactions. Very hard to find information on mastocytosis
So looking forward to your book! So glad to have this video too because my dermatologist and gynecologist don't really understand it. This video is short enough that I can show them during my appointment
Thanks for the fascinating explanation Doc! This sounds like such a tough diagnosis to reach.
So excited for your book!
Finally! Information about MCAS. Thank you! Can you talk a bit about duodenum biopsy to count mast cells? This is common with my GI doc who is familiar with mast cell disorders and the impact on the GI tract.
Dr. Rubin, thanks so much for shedding light on rare diseases! I loved that you did a video on HAE, too, and I am really looking forward to your book! I have been going on a years' long journey of trying to get properly diagnosed and finding the source of my symptoms. Could you explain the relationship, if there is any, between MCAS and HAE? Also, where does POTS come into play? And is it my imagination or do many people with these issues also have symptoms of Ehlers-Danlos? Thanks so much for all you do (including your hula dance videos!)
@Dr. Rubin
Can you speak on Macrophage Activation Syndrome and if anything can be done about it?
Specifically w SJIA with the secondary MAS complication.
Thank you!
Why is this happening to people after a Covid infection? Myself included. I’d love to hear more about this link. Thanks!
That's why I try to shower with cool water as much as possible
I suspect that I have MCAS and I had a referral to do that testing for it. But I get "stuck" at the antihistamine" part. As I react to all corn derivitives and all over the counter antihustamines contain corn! And corn is the thing that triggers my bad alkergy reactions! So the paper to do the test at the lab was useless. I am blocked before I start. Plus antihustamines only give me paradoxical reactions! Years ago (like a decade ago when these allergies were first developing) I tried Nyquil. It made me wide awake as a hoot owl. Benedryl made the inside of my throat numb! And a cough drop that contained corn ingredient made gave me a swollen jaw plus it actually made me cough: bad coughing jags for 30+ munutes each time I took one.
A script for the test is useless.
I have autism, hEDS, allergens triggers Pots - especially corn ones, and have celiac.
Basically living on carnivore and avoiding tons of foods / places. Also react to fumes. Food fumes. Perfume. Air freshner. Etc.
Will you include hereditary alpha tryptasemia syndrome or HATS in this chapter of your book?
I wonder when you have a clear diagnosis.
I just have to check my tryptase (is that correct in English language?) once every year which seems to be a little bit less effort to check for mast cell related diseases.
I'm having an mcas reaction right now. Going to record a video. I'd my rescue bed doesn't work in -5 I have to epi.
Btw love the afro in this video
So in the video he flushes over most his face. Obviously he can’t be diagnosed without visiting the doctor, but can someone explain how this flushing is different from say, lupus, or something similar?
The lupus rash is damaged skin, the immune system is attacking the skin. MAST cell activation is an allergic reaction, caused by histamine. Flushing is usually blood flowing to the face for various reasons- it's a neurological mechanism.
That's hyper dumbified, but those the primary differences.
By looking at the pictures, it's very difficult to tell if it's urticaria (histamine reaction) or flushing. But it definitely is not Lupus, since it resolves quickly.
Wouldn't the inflammatory substances from the mast cells eventually be depleted or dissipated? Only so much can fit in the mast cells, and there are only so many mast cells in the body. So what keeps it all going?
My assumption is that the immune system would keep creating them but I’m just starting to research this myself because of my reactions 🤷🏻♀️
The cells keep making the chemical messengers and storing them in granules
That happens to me when I shower with not even so hot water I always come out of the shower all blotchy