5 ms·

My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into an

My ex has mast cell activation syndrome. We would have to call for an ambulance 3-4 times a month because some days eating a grape could cause her to go into anaphylactic shock. She was allergic to whatever her body felt like at any given time. She was misdiagnosed/undiagnosed for 18 years. I was baffled by this, and I myself have spent numerous hours down the rabbit hole of nootropics, and had a DNA test and was researching myself and how things work and how supplements affect your body and such for sometimes 12 hours a day. (Chronically unemployed, chronically ill.) We got her a DNA test and I went to work researching everything and comparing the possibilities to her symptoms, we tried countless different supplements that could help... And eventually one did, it wasn't a cure but it was a relief she had never felt before. That was Quercetin, which is a mast cell stabilizer. It took about 2 years of research and trial and error to find some relief. We took our findings to the doctor and finally got a referral to an internal medicinist who promptly after hearing the symptoms and what has helped diagnosed her and she was out on a proper mast cell stabilizer. She went from being in bed 20 hours a day to being able to fully enjoy life. (Sadly, without me though!)

jujube69 4mo ago
What's was her daily Quercetin dose? Trying to compare notes.
deleted 4mo ago
[deleted]
elliotbnvl 4mo ago
I just learned I have this as well (not as severe). Quercitin helped me. I am taking I think 1600mg (with bromelain) per day. How much was she taking, and what is the mast cell stabilizer that helped, if you don't mind my asking? I've been dealing with my symptoms for 17 years this year and Quercitin + Zyrtec + Pepcid is the first thing that's made a dent in it. I started a few weeks ago and it's been amazing but I'm not experiencing full relief yet. This was the combo Claude recommended I start with for a trial, one message after I told it my symptoms. No doctor has ever been able to help.
- forrestpitz 4mo ago
  Not op but my wife has MCAS. The things that have helped the most are: Oral Cromolyn (helped sooo much with gi issues), and more recently she's started Ketotifen which is a systemic mast cell stabilizer that's seemed promising but is fairly new. She also tried Montelukast which was well tolerated but didn't make a ton of difference for her personally (but I know it helps a lot of people). Supplement wise DAO was the most useful for food truggers
  - elliotbnvl 4mo ago
    Thank you. This is good info.
  - financltravsty 4mo ago
    Check out Ketotifen
  - BrannonKing 4mo ago
    I know someone with what we thought was MCAS, but it actually ended up being Alpha-gal Syndrome. Knowing that made the whole thing much easier to deal with.
  - shock 4mo ago
    Is oral Cromolyn/Ketotifen available OTC or just by prescription? My search only revealed nasal sprays containing cromolyn.
- SkyPuncher 4mo ago
  I found H2 anti-histamines like Pepcid actually made my symptoms worse. I was in a similar situation where Claude finally helped me make a breakthrough. It seems that my issue is entirely related to histamine levels. * H1 (like Zyrtec) help block the body’s response to high histamines * H2 (like Pepcid) actually worsen my symptoms overtime because my body was readjusting baseline * Quercitin and DAO enzyme help massively. Also being extremely mindful of histamine levels in food helps keep my baselines low. This can be tricky because histamines collect as food ages (so two batches of something can lead to different responses) and some “low histamine” foods can still trigger your body to dump histamines (so they actually act like high histamine foods).
deleted 4mo ago
[deleted]
netsharc 4mo ago
At the risk of sounding like a cryptobro ("What about using a blockchain?"), did you ever try testing LLMs to see if they'd be able to diagnose it correctly? (I'm guessing you did the research before LLMs)
- forrestpitz 4mo ago
  Not OP but anecdotally: ChatGPT diagnosed my wife's MCAS, POTS/Dysautonomia and Ehlers Danlos Syndrome before any doctor did (not for lack of trying on the doctor front). Once we had that direction we found the right providers and it's made a world of difference
  - nextos 4mo ago
    What treatment did your wife receive? Did she improve? Did doctors confirm Ehlers Danlos with genome sequencing?
    - randerson 4mo ago
      90% of EDS sufferers have the Hypermobile variant, for which there is no genetic test. At least thats what I was told by an EDS specialist a few years ago.
      - nextos 4mo ago
        Yes. However, there are some polygenic risk scores for EDS. While not approved for clinical practice, they can serve as guidance.
  - Obscurity4340 4mo ago
    What were her symptoms?
  - DANmode 4mo ago
    It’s interesting the (consistent) list of conditions that one struggles to get an AMA doctor diagnosis for.
ipaddr 4mo ago
Why did you breakup after everything?
- code_biologist 4mo ago
  The problem with being a "fixer" in relationships is if the other party is fixed, what they want changes, and often what they saw in the relationship isn't as relevant anymore. (to speculate from afar)
  - bozhark 4mo ago
    Some fixer’s lose purpose once partner is “fixed”
    - m463 4mo ago
      reminds me of the fixer in pulp fiction. Life of action, then off with a wink and a nod. If not, maybe op can reframe and grab life by the horns.
  - zdc1 4mo ago
    I will point our that most relationships end in separation. Maybe the reason for the breakup was in their story. Maybe they just stopped liking each other. We can't know without OP telling us.
- sfink 4mo ago
  Probably because life is not a fairy tale? I'll be heavily projecting here, but: Health issues can be immensely stressful, and what is required to provide the best logistical and diagnostic support is very different from what is required to be a supportive partner and emotional caregiver. Doctors often fall into the trap of treating the disease and ignoring the patient, but at least that aligns with their job description. It is quite easy to do the same as a partner, and that is NOT the job. For certain personalities, it can often be a massive relief to disappear into searching the web and poring over medical research studies -- the key word there is "disappear". Plus, if someone is suffering physically, you can't really require them to have (what you think is) the "appropriate" amount of gratitude for what you're doing for them. (And physical suffering is always going to lead to mental suffering unless they're a 1000-year old enlightened monk.) You can be quite proud of your savior cred, and your partner can very reasonably tell you to shove that pride up your ass. It's not about whether you're good enough or not. We all start with woefully naive views of how robust our relationships are. We get together as certain people at a certain time. Living together deepens and widens the basis for the relationship, and we'll all fool ourselves into thinking that nothing can break that apart. But fast forward a decade or two, and upend one or the other of your lives with a health challenge or some major life event, and you'll soon discover that you're in new ground and have to learn a bunch of brand new skills that you never needed before. And there's no particular reason why this person X who you bonded with years ago in environment Y is going to be easier to learn with than some random person off the street now that you're in environment not-Y with a different person X2 who evolved from person X -- just as you've evolved (or devolved) into Me2 from the Me you were. Especially not with the added challenge of a long history together of frictions and irritations that never mattered enough to tip things over the edge but do now in the new environment. For the record, I'm still married to my X2 in my very-not-Y situation. For now. But I've seen enough that I would never look down on or even be surprised by the dissolution of even the strongest-seeming relationships when a novel challenge comes around. Back to fairy tales -- Prince Charming's main claim to marriagability was his willingness to make out with a hot living corpse. Are you so sure your own claim is that much superior?
Gooblebrai 4mo ago
Can you tell more technical details on how did you approach the research?
- SkyPuncher 4mo ago
  If I can get Claude to thing about the actual science and bio-chemistry, it can reasonably be through things extremely well.
SkyPuncher 4mo ago
I was on a similar path, but way less severe. I’ve become intolerant to eggs and chicken (and a bunch of other stuff) for some completely unknown reason. Over the course of the past 5 years, my overall health got progressively worse and worse. I tried all sorts of different things, but couldn’t nail down a pattern for years. Even worse, some days I could tolerate something and others it would blow me up. It wasn’t until I started telling Claude literally everything I consumed and how I felt that it dialed into histamine response triggering mast cell activation. I started to realize that a lot of “low histamine” foods either build up histamines as they age (so leftovers kill me) and some “low histamine” foods actually cause the body to naturally liberate histamine (essentially mimicking high histamine foods). It’s extremely hard to get a diagnosis because the triggers are seemingly random and don’t always correlate with common buckets.
deleted 4mo ago
[deleted]
bossyTeacher 4mo ago
> Sadly, without me though! Sad to hear that. You sound like a keeper. Anyway, are you free this weekend? ;)
pgt 4mo ago
Ooh, thanks for this. I'm going to try quercetin for my histadine sensitivity in red wine, which causes a skin reaction. I thought it was the sulphites, but after trying older wines (which have fewer sulphites), it made it worse. So I've narrowed it down to histadines. The dilemma here is that wines tend to improve with age, but they contain more histadines.
FuriouslyAdrift 4mo ago
Loratadine plus famotidine worked for years for me (I have mastocytosis). Switching to a keto diet helped way more, though. I still get flushes, rashes, etc., but the severity has gone down to the point they are random annoyances that go away as opposed to medical events. Cromolyn and/or ketotifen are the big guns for mast cell disorders, though.

jujube69 4mo ago

What's was her daily Quercetin dose? Trying to compare notes.

deleted 4mo ago

[deleted]

elliotbnvl 4mo ago

I just learned I have this as well (not as severe). Quercitin helped me. I am taking I think 1600mg (with bromelain) per day. How much was she taking, and what is the mast cell stabilizer that helped, if you don't mind my asking? I've been dealing with my symptoms for 17 years this year and Quercitin + Zyrtec + Pepcid is the first thing that's made a dent in it. I started a few weeks ago and it's been amazing but I'm not experiencing full relief yet. This was the combo Claude recommended I start with for a trial, one message after I told it my symptoms. No doctor has ever been able to help.

forrestpitz 4mo ago
Not op but my wife has MCAS. The things that have helped the most are: Oral Cromolyn (helped sooo much with gi issues), and more recently she's started Ketotifen which is a systemic mast cell stabilizer that's seemed promising but is fairly new. She also tried Montelukast which was well tolerated but didn't make a ton of difference for her personally (but I know it helps a lot of people). Supplement wise DAO was the most useful for food truggers
- elliotbnvl 4mo ago
  Thank you. This is good info.
- financltravsty 4mo ago
  Check out Ketotifen
- BrannonKing 4mo ago
  I know someone with what we thought was MCAS, but it actually ended up being Alpha-gal Syndrome. Knowing that made the whole thing much easier to deal with.
- shock 4mo ago
  Is oral Cromolyn/Ketotifen available OTC or just by prescription? My search only revealed nasal sprays containing cromolyn.
SkyPuncher 4mo ago
I found H2 anti-histamines like Pepcid actually made my symptoms worse. I was in a similar situation where Claude finally helped me make a breakthrough. It seems that my issue is entirely related to histamine levels. * H1 (like Zyrtec) help block the body’s response to high histamines * H2 (like Pepcid) actually worsen my symptoms overtime because my body was readjusting baseline * Quercitin and DAO enzyme help massively. Also being extremely mindful of histamine levels in food helps keep my baselines low. This can be tricky because histamines collect as food ages (so two batches of something can lead to different responses) and some “low histamine” foods can still trigger your body to dump histamines (so they actually act like high histamine foods).

deleted 4mo ago

[deleted]

netsharc 4mo ago

At the risk of sounding like a cryptobro ("What about using a blockchain?"), did you ever try testing LLMs to see if they'd be able to diagnose it correctly? (I'm guessing you did the research before LLMs)

forrestpitz 4mo ago
Not OP but anecdotally: ChatGPT diagnosed my wife's MCAS, POTS/Dysautonomia and Ehlers Danlos Syndrome before any doctor did (not for lack of trying on the doctor front). Once we had that direction we found the right providers and it's made a world of difference
- nextos 4mo ago
  What treatment did your wife receive? Did she improve? Did doctors confirm Ehlers Danlos with genome sequencing?
  - randerson 4mo ago
    90% of EDS sufferers have the Hypermobile variant, for which there is no genetic test. At least thats what I was told by an EDS specialist a few years ago.
    - nextos 4mo ago
      Yes. However, there are some polygenic risk scores for EDS. While not approved for clinical practice, they can serve as guidance.
- Obscurity4340 4mo ago
  What were her symptoms?
- DANmode 4mo ago
  It’s interesting the (consistent) list of conditions that one struggles to get an AMA doctor diagnosis for.

ipaddr 4mo ago

Why did you breakup after everything?

code_biologist 4mo ago
The problem with being a "fixer" in relationships is if the other party is fixed, what they want changes, and often what they saw in the relationship isn't as relevant anymore. (to speculate from afar)
- bozhark 4mo ago
  Some fixer’s lose purpose once partner is “fixed”
  - m463 4mo ago
    reminds me of the fixer in pulp fiction. Life of action, then off with a wink and a nod. If not, maybe op can reframe and grab life by the horns.
- zdc1 4mo ago
  I will point our that most relationships end in separation. Maybe the reason for the breakup was in their story. Maybe they just stopped liking each other. We can't know without OP telling us.
sfink 4mo ago
Probably because life is not a fairy tale? I'll be heavily projecting here, but: Health issues can be immensely stressful, and what is required to provide the best logistical and diagnostic support is very different from what is required to be a supportive partner and emotional caregiver. Doctors often fall into the trap of treating the disease and ignoring the patient, but at least that aligns with their job description. It is quite easy to do the same as a partner, and that is NOT the job. For certain personalities, it can often be a massive relief to disappear into searching the web and poring over medical research studies -- the key word there is "disappear". Plus, if someone is suffering physically, you can't really require them to have (what you think is) the "appropriate" amount of gratitude for what you're doing for them. (And physical suffering is always going to lead to mental suffering unless they're a 1000-year old enlightened monk.) You can be quite proud of your savior cred, and your partner can very reasonably tell you to shove that pride up your ass. It's not about whether you're good enough or not. We all start with woefully naive views of how robust our relationships are. We get together as certain people at a certain time. Living together deepens and widens the basis for the relationship, and we'll all fool ourselves into thinking that nothing can break that apart. But fast forward a decade or two, and upend one or the other of your lives with a health challenge or some major life event, and you'll soon discover that you're in new ground and have to learn a bunch of brand new skills that you never needed before. And there's no particular reason why this person X who you bonded with years ago in environment Y is going to be easier to learn with than some random person off the street now that you're in environment not-Y with a different person X2 who evolved from person X -- just as you've evolved (or devolved) into Me2 from the Me you were. Especially not with the added challenge of a long history together of frictions and irritations that never mattered enough to tip things over the edge but do now in the new environment. For the record, I'm still married to my X2 in my very-not-Y situation. For now. But I've seen enough that I would never look down on or even be surprised by the dissolution of even the strongest-seeming relationships when a novel challenge comes around. Back to fairy tales -- Prince Charming's main claim to marriagability was his willingness to make out with a hot living corpse. Are you so sure your own claim is that much superior?

Gooblebrai 4mo ago

Can you tell more technical details on how did you approach the research?

SkyPuncher 4mo ago
If I can get Claude to thing about the actual science and bio-chemistry, it can reasonably be through things extremely well.

SkyPuncher 4mo ago

I was on a similar path, but way less severe. I’ve become intolerant to eggs and chicken (and a bunch of other stuff) for some completely unknown reason. Over the course of the past 5 years, my overall health got progressively worse and worse. I tried all sorts of different things, but couldn’t nail down a pattern for years. Even worse, some days I could tolerate something and others it would blow me up. It wasn’t until I started telling Claude literally everything I consumed and how I felt that it dialed into histamine response triggering mast cell activation. I started to realize that a lot of “low histamine” foods either build up histamines as they age (so leftovers kill me) and some “low histamine” foods actually cause the body to naturally liberate histamine (essentially mimicking high histamine foods). It’s extremely hard to get a diagnosis because the triggers are seemingly random and don’t always correlate with common buckets.

deleted 4mo ago

[deleted]

bossyTeacher 4mo ago

> Sadly, without me though! Sad to hear that. You sound like a keeper. Anyway, are you free this weekend? ;)

pgt 4mo ago

Ooh, thanks for this. I'm going to try quercetin for my histadine sensitivity in red wine, which causes a skin reaction. I thought it was the sulphites, but after trying older wines (which have fewer sulphites), it made it worse. So I've narrowed it down to histadines. The dilemma here is that wines tend to improve with age, but they contain more histadines.

FuriouslyAdrift 4mo ago

Loratadine plus famotidine worked for years for me (I have mastocytosis). Switching to a keto diet helped way more, though. I still get flushes, rashes, etc., but the severity has gone down to the point they are random annoyances that go away as opposed to medical events. Cromolyn and/or ketotifen are the big guns for mast cell disorders, though.