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[Dietary intolerance]
hey so just wanted to say, if people keep telling you that your symptoms sound like allergies
but you can't find any kind of consistent pattern as to what the heck you're reacting to
you might want to look into mast cell disorders like MCAS
hey so just wanted to say, if people keep telling you that your symptoms sound like allergies
but you can't find any kind of consistent pattern as to what the heck you're reacting to
you might want to look into mast cell disorders like MCAS
this is a subtweet of myself a decade ago
mast cells: the cells you never learned about in high school biology that can wreak havoc on your body https://twitter.com/UntoNuggan/status/1193288337022423040?s=19
[dietary intolerance]
you might also want to look into "allergy bucket theory" (attributed to Dr Janice Joneja)
which is basically: picture your body is a bucket. Each allergen fills the bucket, but you don't have symptoms until it overflows.
you might also want to look into "allergy bucket theory" (attributed to Dr Janice Joneja)
which is basically: picture your body is a bucket. Each allergen fills the bucket, but you don't have symptoms until it overflows.
[dietary intolerance]
so sometimes, you might be able to tolerate say, lactose
but if you have Too Much Cheese At Once, or if it's also pollen season
then your "bucket" is more likely to overflow
thus explaining the intermittent reactions to whatever trigger
so sometimes, you might be able to tolerate say, lactose
but if you have Too Much Cheese At Once, or if it's also pollen season
then your "bucket" is more likely to overflow
thus explaining the intermittent reactions to whatever trigger
[anaphylaxis, death]
also, if like me you were subjected to watching "My Girl" during every elementary school movie day
then you probably think of allergic reactions as like...hives, throat swelling, and death
when that's possible, but definitely not the only presentation
also, if like me you were subjected to watching "My Girl" during every elementary school movie day
then you probably think of allergic reactions as like...hives, throat swelling, and death
when that's possible, but definitely not the only presentation
[blood]
weird symptoms of mine that have improved since we started treating my MCAS:
- stomach bugs no one else caught
- night time hot flashes
- bleeding gums when I brush my teeth
- weird panicky feeling without any specific anxious thoughts
- swollen joints
weird symptoms of mine that have improved since we started treating my MCAS:
- stomach bugs no one else caught
- night time hot flashes
- bleeding gums when I brush my teeth
- weird panicky feeling without any specific anxious thoughts
- swollen joints
also, I have always been the emperor of weird medication reactions
but uh it turns out that lots of the meds I don't tolerate are ones that other people with MCAS also don't tolerate, due to inactive ingredients or them causing mast cell degranulation https://www.mastattack.org/2016/09/the-provider-primers-series-medications/
but uh it turns out that lots of the meds I don't tolerate are ones that other people with MCAS also don't tolerate, due to inactive ingredients or them causing mast cell degranulation https://www.mastattack.org/2016/09/the-provider-primers-series-medications/
[medical BS]
special shout out to the psychiatrists who kept trying different SSRIs to treat my depression
when MCAS means I have more free serotonin in my system, which can make SSRIs...unhelpful in some people with MCAS https://www.mastattack.org/2017/04/mastattack-107-laypersons-guide-understanding-mast-cell-diseases-part-10/
special shout out to the psychiatrists who kept trying different SSRIs to treat my depression
when MCAS means I have more free serotonin in my system, which can make SSRIs...unhelpful in some people with MCAS https://www.mastattack.org/2017/04/mastattack-107-laypersons-guide-understanding-mast-cell-diseases-part-10/
[medical BS]
at some point, I need to do a whole thread about how MCAS affects pain management because there's a whole host of pain meds that uh make me worse and doctors did not believe me for years
but if you can deal with medical jargon, this may help https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4691098/
at some point, I need to do a whole thread about how MCAS affects pain management because there's a whole host of pain meds that uh make me worse and doctors did not believe me for years
but if you can deal with medical jargon, this may help https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4691098/
[dietary intolerance, vomit]
so for like my whole life, leftovers would sometimes randomly make me sick. anything from IBS bloating to non-stop vomiting
most other people were fine, so I just assumed I was extremely sensitive to foodborne illnesses due to immune system issues
so for like my whole life, leftovers would sometimes randomly make me sick. anything from IBS bloating to non-stop vomiting
most other people were fine, so I just assumed I was extremely sensitive to foodborne illnesses due to immune system issues
[dietary restrictions]
turns out that with MCAS, I end up with too much free histamine in my system
one strategy is to avoid high histamine food
foods release histamine as they age (leftovers, vinegars, etc), are cut into small bits (ground meat), or are cooked slowly (roasts)
turns out that with MCAS, I end up with too much free histamine in my system
one strategy is to avoid high histamine food
foods release histamine as they age (leftovers, vinegars, etc), are cut into small bits (ground meat), or are cooked slowly (roasts)
[dietary restrictions]
anyway, so turns out that I can eat a food and be absolutely fine
but if I put the leftovers in the fridge for a couple days, and then eat them, I can get really sick even though it's technically the same food (just with more histamine)
anyway, so turns out that I can eat a food and be absolutely fine
but if I put the leftovers in the fridge for a couple days, and then eat them, I can get really sick even though it's technically the same food (just with more histamine)
[dietary restrictions]
also this is why I no longer make "clean out your fridge" chilis or soups with all the kind of meh but still technically ok (for most people) vegetables
also this is why I no longer make "clean out your fridge" chilis or soups with all the kind of meh but still technically ok (for most people) vegetables
[dietary restrictions]
Mostly I get around this by freezing my food while it's still fresh, which is unfortunately kind of labor intensive but really helps so I do the thing
If you're trying to figure out which foods are okay for your body, start here https://liminalnest.wordpress.com/2020/02/28/eating-with-mcas-how-do-you-know-if-a-food-is-a-trigger/
Mostly I get around this by freezing my food while it's still fresh, which is unfortunately kind of labor intensive but really helps so I do the thing
If you're trying to figure out which foods are okay for your body, start here https://liminalnest.wordpress.com/2020/02/28/eating-with-mcas-how-do-you-know-if-a-food-is-a-trigger/
[dietary restrictions]
personally, I put off investigating MCAS for awhile once I'd heard of it and suspected I had it because. Seriously. It's so much work, and also it's expensive to figure out which food/soap/cleaner/etc you can use
It has helped my body a lot, though
personally, I put off investigating MCAS for awhile once I'd heard of it and suspected I had it because. Seriously. It's so much work, and also it's expensive to figure out which food/soap/cleaner/etc you can use
It has helped my body a lot, though
[dietary restriction]
if you want to start tackling the mountain of potential MCAS triggers but it's just super overwhelming
what I did was pick one thing (toothpaste, soap, etc), and make gradual changes with what $ I had until it started to help
if you want to start tackling the mountain of potential MCAS triggers but it's just super overwhelming
what I did was pick one thing (toothpaste, soap, etc), and make gradual changes with what $ I had until it started to help
oh, the other thing that treating my MCAS has really helped is random nerve pain and misfiring
I've had so. many. tests. To try to explain it, and they were all normal which. Didn't really help me figure out how to deal with the nerve pain.
I've had so. many. tests. To try to explain it, and they were all normal which. Didn't really help me figure out how to deal with the nerve pain.
so I used to just slather on some lidocaine and hope for the best, but uh turns out -caines (lidocaine, novocaine, etc.) are common triggers for folks with MCAS, myself included
anyway, my physical therapist is the one who told me that inflammation and swelling can cause nerve pain
because basically there's not as much room for your nerves, so they're getting squeezed by your soft tissue (rather than a joint or something)
because basically there's not as much room for your nerves, so they're getting squeezed by your soft tissue (rather than a joint or something)
I didn't realize how *much* MCAS treatment was helping my nerves until I had a big 2020 stress and injury flare over the summer
and I was back with the tingling and random yeeting and tripping over air and not being able to tell if I was touching something hot or cold
and I was back with the tingling and random yeeting and tripping over air and not being able to tell if I was touching something hot or cold
anyway, the flare is currently not as bad (though I'm nowhere near where I was at the beginning of 2020)
and a lot of the random nerve issues have also gotten less bad
and a lot of the random nerve issues have also gotten less bad
the thing with MCAS is that mast cells can release over 200 chemical messengers, and they can do so in various parts of your body
so symptoms vary A Lot, and it's basically like a chameleon where it seems to mimic other issues (e.g. stomach bugs)
so symptoms vary A Lot, and it's basically like a chameleon where it seems to mimic other issues (e.g. stomach bugs)
so there's currently no way to say definitively that MCAS is causing x, y, or z symptoms based only on the symptoms
and like I said, managing it is a giant pain
however, if you have a lot of weird unexplained Mystery Symptoms, it might be worth looking into it
and like I said, managing it is a giant pain
however, if you have a lot of weird unexplained Mystery Symptoms, it might be worth looking into it
My current diagnosis is a clinical one, based on
1. Allergy like symptoms
2. In two or more systems
3. Not explained by another diagnosis
4. That have improved with MCAS treatment https://liminalnest.wordpress.com/2020/08/22/mcas-meds-that-work-for-me/
1. Allergy like symptoms
2. In two or more systems
3. Not explained by another diagnosis
4. That have improved with MCAS treatment https://liminalnest.wordpress.com/2020/08/22/mcas-meds-that-work-for-me/
There are some clinical tests, but unfortunately they're not very reliable due to stuff like "have to be tested during a flare" and "lab sample must be refrigerated correctly the entire time"
Anyway, I know how frustrating it is to be stuck in #DiagnosticLimbo and know there's a systemic issue but not know what it is or how to treat it
I also know that it's really frustrating to try a really complicated treatment protocol and have it not actually help
I also know that it's really frustrating to try a really complicated treatment protocol and have it not actually help
Anyway, so I'm not a doctor and I can't tell you what is best for your body
But for me, MCAS definitely explains a lot of weird stuff that had previously been inexplicable
But for me, MCAS definitely explains a lot of weird stuff that had previously been inexplicable
If you want to find a doctor who has experience with MCAS, I would recommend looking for a local MCAS (or even EDS) patient group, and asking for recommendations. Usually MCAS is diagnosed by an immunologist.
also I forgot to add this up thread, but I always thought all of my post shower fatigue was due to POTS
yeah turns out I was reacting to something in my tap water, and showers are at least 50% less exhausting now that I have a shower filter
yeah turns out I was reacting to something in my tap water, and showers are at least 50% less exhausting now that I have a shower filter
I was chatting with my theyfriend the other day and described MCAS as like. A series of Pandoras boxes labelled "potential MCAS triggers", and opening a new box results in chaos and a lot of work but eventually I'm left with [useful info, or maybe less symptoms]
Anyway, the brain fog is hitting, but if you're interested in more info on MCAS or weird allergies, you might want to follow
@alexhaagaard
@CornAllergyGirl
@HyperfocusBree
@Mast_Attack
@H2OhTwist
And definitely more people that I am forgetting due to brain fog
@alexhaagaard
@CornAllergyGirl
@HyperfocusBree
@Mast_Attack
@H2OhTwist
And definitely more people that I am forgetting due to brain fog
Also, if you're dealing with weird Mystery Symptoms but MCAS maybe doesn't sound like what is going on with your body
Highly recommend this thread, and also the invaluable resource that is #NEISvoid ( @RTsFromTheVoid has an explainer in pinned tweet) https://twitter.com/bennessb/status/1235237886297092097?s=19
Highly recommend this thread, and also the invaluable resource that is #NEISvoid ( @RTsFromTheVoid has an explainer in pinned tweet) https://twitter.com/bennessb/status/1235237886297092097?s=19
Thanks for reading if you got this far. If you have the means and feel like helping me get some of the spendy stuff that helps my body, I have a wishlist.
RTs are also deeply appreciated https://twitter.com/UntoNuggan/status/1349101614242668547?s=19
RTs are also deeply appreciated https://twitter.com/UntoNuggan/status/1349101614242668547?s=19
