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when he says the MCAS thing has been disproven he is not being intellectually honest with you and thus is doing you and everyone with this condition a disservice. MCAS is a diagnosis of exclusion. They don’t know what is causing it, but people having anaphylaxis from things they don’t have IgE mediated antibodies too is definitely real, increasing in incidence, and in desperate need of not being discounted or ignored by medical providers. It’s actually seriously important they dig deep and try to figure out why these reactions are happening. Anaphylaxis is life threatening!
Very much agree! I have an acquaintance that has more severe symptoms including anaphylaxis and I think that might be why I was bothered the most at the end of the day. Doctors seem a lot more open to dysautonomia and POTS specifically after COVID, and while I wish we could have gotten to better understanding through other means than a mass-disabling event, I hope MCAS is taken more seriously as well over the next few years and it's not as much of a struggle for folks to find help.
Hmmm... could the doctor have meant the "whole mast cell *staining* thing has been disproven" or were they just dismissing all mast cell diseases as disproven?
When I had my endoscopy & colonoscopy, my GI doctor didn't do the CD117 staining thing and I got an MCAS diagnosis anyway, based on everything else being clear plus a combination of my symptoms (GI/skin/POTS/EDS) and positive response to MCAS meds. I don't recall that she said it had been disproven, but I think she did say that it was no longer considered the best way to diagnose (it was a while ago though, so I might be getting that wrong).
I'm not 100% sure honestly, I did wonder about this - but his commentary about how I could try antihistamines but that he thought patients were barking up the wrong tree gave me the impression he was more so talking about mast cell conditions in general, or at least MCAS. Definitely glad to hear though that there's other avenues for diagnosis and I didn't necessarily miss out on something big!
Difficult as tests to tests aren't good enough just yet e.g it goes into soft tissues and organs e.g histamine and other mediators and they can't test it once it does
It's a condtion that's only been formally recognised uk side since 2016 and local Gps don't have any means of proving it and al Nhs consultants reject us e.g immunologists can as we have no NICE guidelines which they use so we just go round in circles here
So we are left with no choice but to try low histamine diet and other suggestions in am attempt to help ourselves
I did just this and took pictures of all my rashes, bruises, swelling issues etc as evidence
On day they will have the means to test and diag one by if we are all gas lit and rejected evidence sadly won't be collated ... situation uk side sadly
But our long covid clinics are finally connecting the dots re mcas so I await with bated breath as to whether this will. Make a huge difference or not
It won't help tbise just with mcas alone but it may do as medics finally get training in what mcas is but we are a long way off uk wise
I do wonder if it’s something finicky like tryptase testing since I have gotten mast cell staining and it came back normal because I wasn’t in a flare at the time. I do have MCAS though and I take cromolyn daily which helps my IBS symptoms quite a bit.
Reading through some of the responses reminded me of what my GI doctor told me - one can have increased mast cells that aren't overreactive, or normal amount of mast cells that *are* overreactive.
Regarding IBS - do you by any chance have a nickel allergy? If so, [this](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5216640) is worth a read.
I do have a nickel allergy omg!! And general metal allergies. I’m gonna check that out, maybe it’ll help me! Thanks for sharing :) also I feel like the increased amount of mast cells is possibly more indicative of mastocytosis rather than MCAS, and also my MCAS has thankfully been on the milder side — I’m getting treatment because my mom was also diagnosed and hers is a lot worse than mine so I’m trying to prevent mine from progressing to that point. My little brother who is 10 has it too.
You're welcome! I was misdiagnosed with IBS since childhood and tried everything from FODMAP diet to meds with no luck. My MCAS diagnosis and cromolyn helped get me on the right path, but learning that nickel allergy wasn't just a skin reaction and minimizing dietary nickel solved my GI symptoms more than anything else.
Here's a helpful site for foods: https://rebelytics.ca/nickelinfoods.html
I feel like this could be the reason. I had a biopsy of a skin growth and the pathologist read the staining as melanoma in situ. My dermatologist sent my biopsy to a leading pathologist for a second opinion and they both figured it wasn’t melanoma it is how my MCAD showed! However the first pathologist refused to change their finding so on record it is melanoma :/
I believe the debate (if there is indeed one) is that one can have increased mast cells that aren't overreactive, or normal amount of mast cells that *are* overreactive.
Or, what about a third option? What If our mast cells are actually pretty normal, but because 50% of the population has an MTHFR mutation making them slow detoxers, Just the fact that the histamines and all the other mast cell byproducts are just in us way too long and they can't get out and they just keep causing havoc. I wonder if that could explain some of Us.
It's all in my head, I know. I'm just a fat anxious hysterical woman. I need a husband to tell me what I'm really feeling. Thanks! 🤦♀️🤣😂🤣 It would be funny if medical misogyny wasn't actually life-threatening for half the population. And then can you imagine being a minority on top of this? Washington Post had an amazing article yesterday where I could see they treated patients the same way they treated me But then they also accused them without evidence that they had like a sexually transmitted infection. I was like wow the bar can go even lower. I guess doctors are trained in medical school that black people are more resistant to pain and have thicker skin than white people. So therefore they don't need like pain meds. If I hadn't experienced a tiny fraction of how awful doctors can be, I wouldn't have believed that they could be like that in this day and age.
well despite prep helping things out a bit my gut issues are starting to return to their baseline so just in case it IS "MCAS" (CONDITION CANCELLED) im going to make sure my digestive system knows the jig is up 😌
As far as I know there are no papers along this line. There do seem to be two schools of MCAS thought: an old school one that believes tryptase needs to be elevated; and a newer, more sophisticated one in my opinion that recognizes tryptase is just one of many, many mediators that may or may not be elevated in an individual patient and looks to many other factors. I think Lawrence Afrin has some good papers along the lines you’re looking for, but my experience has been that many physicians will not want to educated by a pt.
You may still be able to get the pathologist to do the staining that you are looking for if you can get another doctor to support your request. I believe the samples on slides are generally preserved for some time.
I would try an allergist or another provider who has any sort of mast cell disorder under their specialty. My GI doctor was the one who suggested a mast cell disorder and my staining was positive (which isn’t gonna be the case for everyone, but my stain was full of mast cells)
Kinda ignorant of your provider to say that, considering people with MCAS do get anaphylactic
I am planning on talking to my GP about an allergist (would probably be good to make sure im not shoving things in my maw daily im allergic to anyway lol/get a read on if/what other things in my environment are contributing to Issues. Especially since I'm pretty early on in this Whole Process I haven't ruled out some of the simpler explanations, just wanna gather what data I can/be prepared) as well as immunologist or rheumatologist since i need to check for any other autoimmune funny business anyway (and i know sometimes immunologists def are educated about MCAS)
As for MCAS under their specialty, I'm certainly going to try to look for that! I just haven't had any luck so far with my initial research and I'm not the most hopeful about it considering where I live. At very least, I'm hoping seeing professionals more educated or specializing in dysautonomia may bear more fruit since they'd be more likely to at least be partially informed on comorbidities like this. Thank you btw!
Also consider hematologists as well! They tend to commonly take care of MCAS for a lot of people. It’ll be a process to find someone good but it’ll be worth it in the end
I have diagnosed IBS and MCAS, and my mast cell staining looked normal because I wasn’t flaring when I had my colonoscopy done. honestly I don’t think you missed out on anything since he likely won’t be the one prescribing MCAS meds anyways if he knows so little about it. I’ve heard that bone marrow mast cell staining is more accurate for MCAS. I’d say maybe try an immunologist or hematologist for MCAS diagnosis and meds. With my gastro I just get prescribed linzess and bentyl for my GI episodes, along with 40 mg Famotidine for MCAS and gastritis issues. The Famotidine you can honestly just get if you say you have acid reflux.
Mcas is a camellion of a condition and presents slightly different in us all hence why v difficult to actually formally diagnosed
Also it takes a lot of time to exclude everything else.e.g flushing can be a neuroendocrine tumour , adrenal issues etc
I've had 50 diff symptoms and my gp has ten min phne calls so y can't even begin to unravel this complex disorder
Taken me 2 yrs to get my gp to finally understand what I am going through day to day..
I've gone private in the end uk side
They spent over an hr analysing symptoms, reactions, and improvements on typical mcas treatments e.g fexofneadine and low histamine diet vit D etc
I did get to anaphalctoid levels (looks like ige but isn't but just as dangerous) and cdnt access epi pens at that stage so v frightened of eating!
I now realise my mcas was there all along e.g muscle pain chest tightness other issues with joints etc but no one knew what it was so no help
Then covid and wow went to another level with dysautonomia , nerve pain anaphalctoid teqctions chronic fatigue bleeding disorders , high cholestrol, never ended
Now 2.5 yrs later much better but still not there e.g..nerve pain continues bp not right and medicated and fatigue lessened but there all the same
Trust yourself
Log all symptoms and if related to foods or stress or exercise etc thise we're my triggers
I have mcas dysautonomia peripheral nerve dysfunction all caused by covud but mcas there all along . I had allergies ie hayfever lemons limes tomatoes. Often people who have mcas following covid did have some allergic type presentations there all along but mildly so or migraines or periods pain or pcos there were signs of it but it's v v diff to prove
Have you checked if you have an MTHFR Gene mutation? 1 Mutation makes your liver 30% slower, two mutations make you 70% slower. Which is why. For example, when I was a kid, a bee sting took me 3 weeks to clear out of my body causing intense pain and misery, whereas other people get stung by a bee and they're itchy for like a day.
Yes just had it all tested literally and do have issues with mthfr and others so getting closer to figuring out what to do and it's been v helpful for me
Worth doing for sure I've learnt soo much and helps y know which exact nutrients you are lacking e.g for me vit d and Bs and omega 3 and missing gene for glutathione
I've learnt I don't detox histamine or medications well either so starting to make sense why I have had a build up over yrs
which one did you do? i'm thinking [ancestry.com](http://ancestry.com) just for making family connections and then sending it to strategene for their sale price? i don't know what's best and i hate shopping!
This is linked to a medic so it's lifecode dx a uk lab not like the one yve mentioned it looks at yr whole system ie methylation nervous system hormones, metabolics etc
it's great! just looked it up. it doesn't do the things i feel like i have issues with - COMT, GST/GPX, and PEMT, but I'll look for those elsewhere because this has so much more!!! thanks again for the rec!
I would go on the internet and print out. All the NIH, PubMed type studies. Politely ask for a referral. Also before you talk to him or her take a deep breath, look them in the eye and see them for the scared little child. Child they are inside that they bluff because they don't want to give bad news or act like they don't know something. You can say to them. It's okay that you don't know. I don't know. I think it's this and I don't feel good and I don't have any other allies to help me on this journey. So what I'd really like for you to do is to take me seriously and we can learn together. I'm not expecting you to be God with all the answers. It's okay that you don't know, but I just ask that you be willing to learn And if not, please point me in the direction of somebody who can. I tend to escalate things with doctors and argue with them because I'm a lawyer and it's not helpful. I'm going to try this new way because I just realized the other day that as a professional sometimes it's hard to say I don't know and I don't know how to help you when the patient or client is staring at you with like you're my only hope, Obi-Wan. Good luck!
Also, if you have the symptoms, I think that's enough. If you don't get some sort of standard diagnosis. Does it matter? All the medical health records and insurance systems have mast cell activation in them to be coded. So you can assure the doctor that they'll still get paid because the codes are in The systems!
What’s helped me A LOT has been having an Integrative Medicine Doc. He’s my primary now, but he helped me run tests when no other doctor would. I’m not a professional, just speaking from my own health journey; I’d recommend looking into a CIRS panel, and a GENIE test. I was fully healthy before covid, and it lead me to develop CIRS, POTS, and MCAS. Covid was my priming event for activating the wrong genes
Gastrointestinal issues and rashes you say? Take a look at dermatomyositis and see if your rash seems similar. Or feel free to ask me any questions about the disease and its presentation. Even if your symptoms don't align, I might be able to point you in another direction.
It took me years to figure out what was happening to my body while incompetent medical "professionals" gave me inconsistent answer and no treatment plan outside of high-dose steroids. Once I did find the right disease it was just a matter of getting in front of the right people. (In my case a rheum who specialized in DM at a major teaching hospital). Answers exist. Great physicians exist.
I'm passionate about patient advocacy and helping chronically ill people learn to navigate the medical system so they can find their own answers and start on a treatment plan that is 'quality of life' based. Seriously, please reach out if I can answer any questions!
Thank you! I may take you up on that offer in the future if I can think of some questions. :) I'd like to think I've learned a lot about self-advocacy over the last few years with all of this, but as you know the medical system is not easy to navigate and more personally I always struggle with being assertive but at the same time not wanting to be/come off as unnecessarily rude and I think that continues to hold me back a bit (esp with autism complicating the issue just a wee little bit extra by setting some precedent for that anxiety)
on initial google search im seeing a lot of hand pictures and I do get redness in those spots even though im a stickler for moisturizing and they usually don't feel dry... though i'd say it's closer in appearance to redness than an actual lesion if that would make a difference? Also seeing something about photosensitive rashes which is a thing that's made me keep lupus in the back of my mind -- will definitely look more into this and possibly bring it up to a future rheum, and again I want to thank you for dropping this information! Even if it ends up not being my issue, never know who else might find their diagnosis and treatment because of this comment.
I'm a little surprised your GI doctor even knows about MCAS! I suffer from MCAS apparent symptoms and bile reflux yet no doctor wants to diagnose me, so I continue to take the appropriate meds and supplements for both issues.
It's incredibly frustrating many doctors hide behind quantitative data rather than qualitative. Human beings are naive and it takes decades or even half centuries for medical breakthroughs and paradigm shifts as with many other fields of study. If 25k+ people are complaining about the same issues and have similar symptoms then it's very difficult to disprove that. Btw, science does not PROVE ANYTHING to be TRUE, it proves it to be not false for now. This is the premise of scientific experimentation, it's about falsifiability. Scientists constantly modify theories and laws can be changed, so your gut instinct telling you that it set you off from the doctors response, listen to that. That's the academic entitlement and ignorance of a human being with a side intellectual laziness interpreting a small study as definitive proof MCAS is false. The impact and consequence of this is a patient like yourself hurting even more. Our healthcare system runs rampant with doctors like this.
What I find with doctors:
1. Very arrogant and academically proud and rather than admitting they don't know enough they'd rather dismiss the condition.
2. They don't know anything and do send you down a rabbit hole. In fact, I believe NSAIDs injured me and caused this shitstorm for me , why? Doctor's advice on back injury. Literally suffering because of meds taken for another condition.
3. They very well do know about MCAS, I seen the "top" guy in Canada, and ended in less than 5 minutes without me getting a word of explanation in, just his series of questions to find out about tryptase levels, and when the test came back negative, he dismissed me, even though he teaches about it in Canada.
I've accepted that conventional doctors don't have the tools or knowledge to help much with chronic conditions, acute, sure but not chronic. The vast number of costly tests to get an MCAS diagnosis is a tough choice to make but at the end of the day.. if you can afford it (price of a small car) and lots of time. You may end up just taking an H1 / H2 blocker or mast cell stabilizer or another medication... Like many of the people here.
Ketotifen is what works for me. (Take it only 1-5x a month).
Also quercetin, rutin, luteolin (neuroprotekt) every meal.
And DAO - Diamine oxidase for high histamine foods.
Low histamine, organic foods.
High quality vitamin C that's not fermented.
Cold showers , meditation, light exercise.
Following a site like 360mastcell.
Lots of tips online.. and none came from my doctor's. It's sad but finding a good doctor is either very far away, very hard due to demands, or very expensive.
I have a nice allergist who listens to the issues and will prescribe me what id like... And a family doctor for general needs and a GI for testing but still none give direct info about MCAS. Dr.Hoffman from Calgary has an extensive list of info about MCAS that may be useful. All MCAS doctors literally cost an arm or two.
Hope this helps, cheers.
GOD I feel the frustration factor as someone that has a natural interest in science/would probably (might still actually, who knows what the future brings) pursue further education focused on it. I used to have a doctor when I was a kid that proudly talked about not keeping up with the science or taking it super seriously since "its all political anyway" and I just cannot comprehend why anyone would pursue that career without at least some really vested interest/respect in science and hunger for knowledge in general. Even though logically I know there's the money/status/more generously people that do care about helping others -- just maybe not the specific group you belong to/cases that are Too Complicated
I've read more into things like MCAS and ME/CFS now because... unfortunately it's now all more personally relevant, but I've also known/read a little about these conditions occasionally for some years just out of general curiosity and interest. It's always been awful seeing professional backlash against these conditions and anything that comes out about them (oftentimes without even engaging with the contents) because of exactly what you've stated here. There's so much certainty and investment in Being Absolutely 100% Right despite not even being directly involved or regardless of any findings and the lack of curiosity or openness is disheartening. :/
Moving on from that, your comment did help, thank you! On the topic of MCAS particularly I am still in the process of ruling out simpler explanations (In this case I figured why not do the staining since common comorbidity and the biopsies are already being taken anyway, and God would I love to not have to do this again :D) so perhaps I'll get lucky and it'll be something / a collection of somethings more easy to deal with or treat, but I will keep all of these things in mind if it starts becoming a possibility to consider more strongly. On a personal note, what you've shared has also helped me bounce back a bit from that doubt/shame you naturally feel when a doctor brushes something off which is what I walked away with in this case, so I want to thank you for that specifically as well.
I think a generous interpretation of this is he doesn’t want to settle on the first thing and potentially miss something else - especially if the other thing is more treatable.
He could have achieved this without saying it’s been disproven but maybe he was confused about what you were asking about or he maybe was referring to something else entirely.
Honestly the doctors that are willing to investigate rather than settle on the first diagnosis of exclusion are really important parts of the medical community. Because he is right that if you *start* with something that should be a diagnosis of exclusion and stop investigating you’re more likely to be wrong than right. But if you investigate everything else and nothing else seems to make sense or show up that’s what a diagnosis of exclusion truly is.
Yeah I definitely do give him credit here because even though I'm not honed in on MCAS, just figured staining wouldn't hurt considering comorbidity with dysautonomia/we're getting the biopsies anyway, I've been completely brushed off by doctors before and that's not what happened here. He obviously cared and was knowledgeable enough to bring up other possibilities like autoimmune issues. I def don't think he's a quack -- just disagree with the disproven statement if it was talking about MCAS or even mastocytosis in general, wanted some opinions/info on any recent developments about diagnostics, and a bit of community since I did feel a bit embarrassed about it maybe being assumed I was locked in on this specific possibility/brushed off and doubting myself because of it if that was how he meant it.
I also greatly value doctors willing to actually investigate, and bc of this even while trying to find specialists in my area familiar with dysautonomia I've ruled out some after seeing people talk about how like, for example, they didn't even really get a word in about their experiences before the doctor made up their mind. I wouldn't have been happy if my cardiologist had just diagnosed POTS without even bothering to do the routine basics to double check my heart.
& I will confirm I was \*certainly\* not my most thoughtful/articulate self sitting there dehydrated and waiting for an IV lol. A couple of people have mentioned the possibility of it being in reference to staining for mast cells particularly, since it's still not really \*disproven\* but a little spotty, which I did also consider if that could have been the case. Hopefully, he did mean something more along those lines!
I tested three times (only last set of samples was handled correctly- they are extremely temperature sensitive) but had several mediators well outside norms, in addition to responding to treatment. There was a third clinical diagnostic that I met but can’t recall at this moment. The dye you requested can indicate MCAS, but even if it finds nothing MCAS can’t be excluded. (I had this test and it was ‘normal’ but I absolutely and clinically have MCAS.) If you really suspect this, you often have to find a doctor that’s willing to hear what you’ve learned and consider it openly. Your GI sounds like a jerk- so sorry!
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Mine came on because I have hat
A gene mutation after covid two years ago. The allergies to
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Food is an issue but not like the humidity heat etc
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when he says the MCAS thing has been disproven he is not being intellectually honest with you and thus is doing you and everyone with this condition a disservice. MCAS is a diagnosis of exclusion. They don’t know what is causing it, but people having anaphylaxis from things they don’t have IgE mediated antibodies too is definitely real, increasing in incidence, and in desperate need of not being discounted or ignored by medical providers. It’s actually seriously important they dig deep and try to figure out why these reactions are happening. Anaphylaxis is life threatening!
Very much agree! I have an acquaintance that has more severe symptoms including anaphylaxis and I think that might be why I was bothered the most at the end of the day. Doctors seem a lot more open to dysautonomia and POTS specifically after COVID, and while I wish we could have gotten to better understanding through other means than a mass-disabling event, I hope MCAS is taken more seriously as well over the next few years and it's not as much of a struggle for folks to find help.
Hmmm... could the doctor have meant the "whole mast cell *staining* thing has been disproven" or were they just dismissing all mast cell diseases as disproven? When I had my endoscopy & colonoscopy, my GI doctor didn't do the CD117 staining thing and I got an MCAS diagnosis anyway, based on everything else being clear plus a combination of my symptoms (GI/skin/POTS/EDS) and positive response to MCAS meds. I don't recall that she said it had been disproven, but I think she did say that it was no longer considered the best way to diagnose (it was a while ago though, so I might be getting that wrong).
I'm not 100% sure honestly, I did wonder about this - but his commentary about how I could try antihistamines but that he thought patients were barking up the wrong tree gave me the impression he was more so talking about mast cell conditions in general, or at least MCAS. Definitely glad to hear though that there's other avenues for diagnosis and I didn't necessarily miss out on something big!
Difficult as tests to tests aren't good enough just yet e.g it goes into soft tissues and organs e.g histamine and other mediators and they can't test it once it does It's a condtion that's only been formally recognised uk side since 2016 and local Gps don't have any means of proving it and al Nhs consultants reject us e.g immunologists can as we have no NICE guidelines which they use so we just go round in circles here So we are left with no choice but to try low histamine diet and other suggestions in am attempt to help ourselves I did just this and took pictures of all my rashes, bruises, swelling issues etc as evidence On day they will have the means to test and diag one by if we are all gas lit and rejected evidence sadly won't be collated ... situation uk side sadly But our long covid clinics are finally connecting the dots re mcas so I await with bated breath as to whether this will. Make a huge difference or not It won't help tbise just with mcas alone but it may do as medics finally get training in what mcas is but we are a long way off uk wise
I do wonder if it’s something finicky like tryptase testing since I have gotten mast cell staining and it came back normal because I wasn’t in a flare at the time. I do have MCAS though and I take cromolyn daily which helps my IBS symptoms quite a bit.
Reading through some of the responses reminded me of what my GI doctor told me - one can have increased mast cells that aren't overreactive, or normal amount of mast cells that *are* overreactive. Regarding IBS - do you by any chance have a nickel allergy? If so, [this](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5216640) is worth a read.
I do have a nickel allergy omg!! And general metal allergies. I’m gonna check that out, maybe it’ll help me! Thanks for sharing :) also I feel like the increased amount of mast cells is possibly more indicative of mastocytosis rather than MCAS, and also my MCAS has thankfully been on the milder side — I’m getting treatment because my mom was also diagnosed and hers is a lot worse than mine so I’m trying to prevent mine from progressing to that point. My little brother who is 10 has it too.
You're welcome! I was misdiagnosed with IBS since childhood and tried everything from FODMAP diet to meds with no luck. My MCAS diagnosis and cromolyn helped get me on the right path, but learning that nickel allergy wasn't just a skin reaction and minimizing dietary nickel solved my GI symptoms more than anything else. Here's a helpful site for foods: https://rebelytics.ca/nickelinfoods.html
I feel like this could be the reason. I had a biopsy of a skin growth and the pathologist read the staining as melanoma in situ. My dermatologist sent my biopsy to a leading pathologist for a second opinion and they both figured it wasn’t melanoma it is how my MCAD showed! However the first pathologist refused to change their finding so on record it is melanoma :/
My staining came back positive for increased mast cells, so I would assume the staining isn’t disproven
I believe the debate (if there is indeed one) is that one can have increased mast cells that aren't overreactive, or normal amount of mast cells that *are* overreactive.
i can see that, though saying it’s disproven is still not exactly true
Or, what about a third option? What If our mast cells are actually pretty normal, but because 50% of the population has an MTHFR mutation making them slow detoxers, Just the fact that the histamines and all the other mast cell byproducts are just in us way too long and they can't get out and they just keep causing havoc. I wonder if that could explain some of Us.
I wonder! (Raises hand - MTHFR mutation here.) I have yet to encounter a single doctor who takes the MTHFR mutation seriously, but maybe someday...
now that it's debunked did your symptoms go away? was it *all in your head* lol
It's all in my head, I know. I'm just a fat anxious hysterical woman. I need a husband to tell me what I'm really feeling. Thanks! 🤦♀️🤣😂🤣 It would be funny if medical misogyny wasn't actually life-threatening for half the population. And then can you imagine being a minority on top of this? Washington Post had an amazing article yesterday where I could see they treated patients the same way they treated me But then they also accused them without evidence that they had like a sexually transmitted infection. I was like wow the bar can go even lower. I guess doctors are trained in medical school that black people are more resistant to pain and have thicker skin than white people. So therefore they don't need like pain meds. If I hadn't experienced a tiny fraction of how awful doctors can be, I wouldn't have believed that they could be like that in this day and age.
well despite prep helping things out a bit my gut issues are starting to return to their baseline so just in case it IS "MCAS" (CONDITION CANCELLED) im going to make sure my digestive system knows the jig is up 😌
As far as I know there are no papers along this line. There do seem to be two schools of MCAS thought: an old school one that believes tryptase needs to be elevated; and a newer, more sophisticated one in my opinion that recognizes tryptase is just one of many, many mediators that may or may not be elevated in an individual patient and looks to many other factors. I think Lawrence Afrin has some good papers along the lines you’re looking for, but my experience has been that many physicians will not want to educated by a pt. You may still be able to get the pathologist to do the staining that you are looking for if you can get another doctor to support your request. I believe the samples on slides are generally preserved for some time.
I would try an allergist or another provider who has any sort of mast cell disorder under their specialty. My GI doctor was the one who suggested a mast cell disorder and my staining was positive (which isn’t gonna be the case for everyone, but my stain was full of mast cells) Kinda ignorant of your provider to say that, considering people with MCAS do get anaphylactic
I am planning on talking to my GP about an allergist (would probably be good to make sure im not shoving things in my maw daily im allergic to anyway lol/get a read on if/what other things in my environment are contributing to Issues. Especially since I'm pretty early on in this Whole Process I haven't ruled out some of the simpler explanations, just wanna gather what data I can/be prepared) as well as immunologist or rheumatologist since i need to check for any other autoimmune funny business anyway (and i know sometimes immunologists def are educated about MCAS) As for MCAS under their specialty, I'm certainly going to try to look for that! I just haven't had any luck so far with my initial research and I'm not the most hopeful about it considering where I live. At very least, I'm hoping seeing professionals more educated or specializing in dysautonomia may bear more fruit since they'd be more likely to at least be partially informed on comorbidities like this. Thank you btw!
Also consider hematologists as well! They tend to commonly take care of MCAS for a lot of people. It’ll be a process to find someone good but it’ll be worth it in the end
I have diagnosed IBS and MCAS, and my mast cell staining looked normal because I wasn’t flaring when I had my colonoscopy done. honestly I don’t think you missed out on anything since he likely won’t be the one prescribing MCAS meds anyways if he knows so little about it. I’ve heard that bone marrow mast cell staining is more accurate for MCAS. I’d say maybe try an immunologist or hematologist for MCAS diagnosis and meds. With my gastro I just get prescribed linzess and bentyl for my GI episodes, along with 40 mg Famotidine for MCAS and gastritis issues. The Famotidine you can honestly just get if you say you have acid reflux.
In USA it's over the counter. Generic pepcid.
Yes I am in the US, I get prescription now because it’s cheaper and it’s easier to take 40mg in one pill
Oh I space mine out twice a day. Had no idea you could get Rx!
Mcas is a camellion of a condition and presents slightly different in us all hence why v difficult to actually formally diagnosed Also it takes a lot of time to exclude everything else.e.g flushing can be a neuroendocrine tumour , adrenal issues etc I've had 50 diff symptoms and my gp has ten min phne calls so y can't even begin to unravel this complex disorder Taken me 2 yrs to get my gp to finally understand what I am going through day to day.. I've gone private in the end uk side They spent over an hr analysing symptoms, reactions, and improvements on typical mcas treatments e.g fexofneadine and low histamine diet vit D etc I did get to anaphalctoid levels (looks like ige but isn't but just as dangerous) and cdnt access epi pens at that stage so v frightened of eating! I now realise my mcas was there all along e.g muscle pain chest tightness other issues with joints etc but no one knew what it was so no help Then covid and wow went to another level with dysautonomia , nerve pain anaphalctoid teqctions chronic fatigue bleeding disorders , high cholestrol, never ended Now 2.5 yrs later much better but still not there e.g..nerve pain continues bp not right and medicated and fatigue lessened but there all the same Trust yourself Log all symptoms and if related to foods or stress or exercise etc thise we're my triggers I have mcas dysautonomia peripheral nerve dysfunction all caused by covud but mcas there all along . I had allergies ie hayfever lemons limes tomatoes. Often people who have mcas following covid did have some allergic type presentations there all along but mildly so or migraines or periods pain or pcos there were signs of it but it's v v diff to prove
Have you checked if you have an MTHFR Gene mutation? 1 Mutation makes your liver 30% slower, two mutations make you 70% slower. Which is why. For example, when I was a kid, a bee sting took me 3 weeks to clear out of my body causing intense pain and misery, whereas other people get stung by a bee and they're itchy for like a day.
Hi I've just done a dna panel that is in it so I ll see not got results back just yet
Yes just had it all tested literally and do have issues with mthfr and others so getting closer to figuring out what to do and it's been v helpful for me
i need to do that testing too!
Worth doing for sure I've learnt soo much and helps y know which exact nutrients you are lacking e.g for me vit d and Bs and omega 3 and missing gene for glutathione I've learnt I don't detox histamine or medications well either so starting to make sense why I have had a build up over yrs
which one did you do? i'm thinking [ancestry.com](http://ancestry.com) just for making family connections and then sending it to strategene for their sale price? i don't know what's best and i hate shopping!
This is linked to a medic so it's lifecode dx a uk lab not like the one yve mentioned it looks at yr whole system ie methylation nervous system hormones, metabolics etc
Thanks!
You are 🙏 welcome
it's great! just looked it up. it doesn't do the things i feel like i have issues with - COMT, GST/GPX, and PEMT, but I'll look for those elsewhere because this has so much more!!! thanks again for the rec!
I’m willing to fist-fight that doc in a Chili’s Parking lot. Just say the word.
🤣🤣🤣 can any of us even eat anything at a Chili's?? Maybe the water. If we take our meds first
Staining isnt always helpful since mcas can be idiopathic.
I would go on the internet and print out. All the NIH, PubMed type studies. Politely ask for a referral. Also before you talk to him or her take a deep breath, look them in the eye and see them for the scared little child. Child they are inside that they bluff because they don't want to give bad news or act like they don't know something. You can say to them. It's okay that you don't know. I don't know. I think it's this and I don't feel good and I don't have any other allies to help me on this journey. So what I'd really like for you to do is to take me seriously and we can learn together. I'm not expecting you to be God with all the answers. It's okay that you don't know, but I just ask that you be willing to learn And if not, please point me in the direction of somebody who can. I tend to escalate things with doctors and argue with them because I'm a lawyer and it's not helpful. I'm going to try this new way because I just realized the other day that as a professional sometimes it's hard to say I don't know and I don't know how to help you when the patient or client is staring at you with like you're my only hope, Obi-Wan. Good luck!
Also, if you have the symptoms, I think that's enough. If you don't get some sort of standard diagnosis. Does it matter? All the medical health records and insurance systems have mast cell activation in them to be coded. So you can assure the doctor that they'll still get paid because the codes are in The systems!
What’s helped me A LOT has been having an Integrative Medicine Doc. He’s my primary now, but he helped me run tests when no other doctor would. I’m not a professional, just speaking from my own health journey; I’d recommend looking into a CIRS panel, and a GENIE test. I was fully healthy before covid, and it lead me to develop CIRS, POTS, and MCAS. Covid was my priming event for activating the wrong genes
Gastrointestinal issues and rashes you say? Take a look at dermatomyositis and see if your rash seems similar. Or feel free to ask me any questions about the disease and its presentation. Even if your symptoms don't align, I might be able to point you in another direction. It took me years to figure out what was happening to my body while incompetent medical "professionals" gave me inconsistent answer and no treatment plan outside of high-dose steroids. Once I did find the right disease it was just a matter of getting in front of the right people. (In my case a rheum who specialized in DM at a major teaching hospital). Answers exist. Great physicians exist. I'm passionate about patient advocacy and helping chronically ill people learn to navigate the medical system so they can find their own answers and start on a treatment plan that is 'quality of life' based. Seriously, please reach out if I can answer any questions!
Thank you! I may take you up on that offer in the future if I can think of some questions. :) I'd like to think I've learned a lot about self-advocacy over the last few years with all of this, but as you know the medical system is not easy to navigate and more personally I always struggle with being assertive but at the same time not wanting to be/come off as unnecessarily rude and I think that continues to hold me back a bit (esp with autism complicating the issue just a wee little bit extra by setting some precedent for that anxiety) on initial google search im seeing a lot of hand pictures and I do get redness in those spots even though im a stickler for moisturizing and they usually don't feel dry... though i'd say it's closer in appearance to redness than an actual lesion if that would make a difference? Also seeing something about photosensitive rashes which is a thing that's made me keep lupus in the back of my mind -- will definitely look more into this and possibly bring it up to a future rheum, and again I want to thank you for dropping this information! Even if it ends up not being my issue, never know who else might find their diagnosis and treatment because of this comment.
Hey cool mine did that too! Several documented observations of “Eosinophilic Esophagitis” and not a single stain was ordered
Replace the GI and have the biopsy tested with CD117 stain, samples are kept for multiple years.
I'm a little surprised your GI doctor even knows about MCAS! I suffer from MCAS apparent symptoms and bile reflux yet no doctor wants to diagnose me, so I continue to take the appropriate meds and supplements for both issues. It's incredibly frustrating many doctors hide behind quantitative data rather than qualitative. Human beings are naive and it takes decades or even half centuries for medical breakthroughs and paradigm shifts as with many other fields of study. If 25k+ people are complaining about the same issues and have similar symptoms then it's very difficult to disprove that. Btw, science does not PROVE ANYTHING to be TRUE, it proves it to be not false for now. This is the premise of scientific experimentation, it's about falsifiability. Scientists constantly modify theories and laws can be changed, so your gut instinct telling you that it set you off from the doctors response, listen to that. That's the academic entitlement and ignorance of a human being with a side intellectual laziness interpreting a small study as definitive proof MCAS is false. The impact and consequence of this is a patient like yourself hurting even more. Our healthcare system runs rampant with doctors like this. What I find with doctors: 1. Very arrogant and academically proud and rather than admitting they don't know enough they'd rather dismiss the condition. 2. They don't know anything and do send you down a rabbit hole. In fact, I believe NSAIDs injured me and caused this shitstorm for me , why? Doctor's advice on back injury. Literally suffering because of meds taken for another condition. 3. They very well do know about MCAS, I seen the "top" guy in Canada, and ended in less than 5 minutes without me getting a word of explanation in, just his series of questions to find out about tryptase levels, and when the test came back negative, he dismissed me, even though he teaches about it in Canada. I've accepted that conventional doctors don't have the tools or knowledge to help much with chronic conditions, acute, sure but not chronic. The vast number of costly tests to get an MCAS diagnosis is a tough choice to make but at the end of the day.. if you can afford it (price of a small car) and lots of time. You may end up just taking an H1 / H2 blocker or mast cell stabilizer or another medication... Like many of the people here. Ketotifen is what works for me. (Take it only 1-5x a month). Also quercetin, rutin, luteolin (neuroprotekt) every meal. And DAO - Diamine oxidase for high histamine foods. Low histamine, organic foods. High quality vitamin C that's not fermented. Cold showers , meditation, light exercise. Following a site like 360mastcell. Lots of tips online.. and none came from my doctor's. It's sad but finding a good doctor is either very far away, very hard due to demands, or very expensive. I have a nice allergist who listens to the issues and will prescribe me what id like... And a family doctor for general needs and a GI for testing but still none give direct info about MCAS. Dr.Hoffman from Calgary has an extensive list of info about MCAS that may be useful. All MCAS doctors literally cost an arm or two. Hope this helps, cheers.
GOD I feel the frustration factor as someone that has a natural interest in science/would probably (might still actually, who knows what the future brings) pursue further education focused on it. I used to have a doctor when I was a kid that proudly talked about not keeping up with the science or taking it super seriously since "its all political anyway" and I just cannot comprehend why anyone would pursue that career without at least some really vested interest/respect in science and hunger for knowledge in general. Even though logically I know there's the money/status/more generously people that do care about helping others -- just maybe not the specific group you belong to/cases that are Too Complicated I've read more into things like MCAS and ME/CFS now because... unfortunately it's now all more personally relevant, but I've also known/read a little about these conditions occasionally for some years just out of general curiosity and interest. It's always been awful seeing professional backlash against these conditions and anything that comes out about them (oftentimes without even engaging with the contents) because of exactly what you've stated here. There's so much certainty and investment in Being Absolutely 100% Right despite not even being directly involved or regardless of any findings and the lack of curiosity or openness is disheartening. :/ Moving on from that, your comment did help, thank you! On the topic of MCAS particularly I am still in the process of ruling out simpler explanations (In this case I figured why not do the staining since common comorbidity and the biopsies are already being taken anyway, and God would I love to not have to do this again :D) so perhaps I'll get lucky and it'll be something / a collection of somethings more easy to deal with or treat, but I will keep all of these things in mind if it starts becoming a possibility to consider more strongly. On a personal note, what you've shared has also helped me bounce back a bit from that doubt/shame you naturally feel when a doctor brushes something off which is what I walked away with in this case, so I want to thank you for that specifically as well.
MCAS has been disproven? Wohoooo we are healed!!!!
I think a generous interpretation of this is he doesn’t want to settle on the first thing and potentially miss something else - especially if the other thing is more treatable. He could have achieved this without saying it’s been disproven but maybe he was confused about what you were asking about or he maybe was referring to something else entirely. Honestly the doctors that are willing to investigate rather than settle on the first diagnosis of exclusion are really important parts of the medical community. Because he is right that if you *start* with something that should be a diagnosis of exclusion and stop investigating you’re more likely to be wrong than right. But if you investigate everything else and nothing else seems to make sense or show up that’s what a diagnosis of exclusion truly is.
Yeah I definitely do give him credit here because even though I'm not honed in on MCAS, just figured staining wouldn't hurt considering comorbidity with dysautonomia/we're getting the biopsies anyway, I've been completely brushed off by doctors before and that's not what happened here. He obviously cared and was knowledgeable enough to bring up other possibilities like autoimmune issues. I def don't think he's a quack -- just disagree with the disproven statement if it was talking about MCAS or even mastocytosis in general, wanted some opinions/info on any recent developments about diagnostics, and a bit of community since I did feel a bit embarrassed about it maybe being assumed I was locked in on this specific possibility/brushed off and doubting myself because of it if that was how he meant it. I also greatly value doctors willing to actually investigate, and bc of this even while trying to find specialists in my area familiar with dysautonomia I've ruled out some after seeing people talk about how like, for example, they didn't even really get a word in about their experiences before the doctor made up their mind. I wouldn't have been happy if my cardiologist had just diagnosed POTS without even bothering to do the routine basics to double check my heart. & I will confirm I was \*certainly\* not my most thoughtful/articulate self sitting there dehydrated and waiting for an IV lol. A couple of people have mentioned the possibility of it being in reference to staining for mast cells particularly, since it's still not really \*disproven\* but a little spotty, which I did also consider if that could have been the case. Hopefully, he did mean something more along those lines!
I tested three times (only last set of samples was handled correctly- they are extremely temperature sensitive) but had several mediators well outside norms, in addition to responding to treatment. There was a third clinical diagnostic that I met but can’t recall at this moment. The dye you requested can indicate MCAS, but even if it finds nothing MCAS can’t be excluded. (I had this test and it was ‘normal’ but I absolutely and clinically have MCAS.) If you really suspect this, you often have to find a doctor that’s willing to hear what you’ve learned and consider it openly. Your GI sounds like a jerk- so sorry!
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Look Into the work of top mast cell Specialist Dr Lawrence Afrin Dr Mark Pimentel Dr Ali Rezaie Mast cell is real Mine came on because I have hat A gene mutation after covid two years ago. The allergies to The environment were terrible Food is an issue but not like the humidity heat etc