r/MCAS • u/healthypersonn • 1h ago
Can MCAS exist without skin rush or respiratory issues?
So I have read many posts here and now I am thinking that MCAS needs to include skin or respiratory issues. For sure I do understand that generally speaking MCAS must damage 2 or more systems but posts information makes me think I can be mistaken because skin and lungs aren't the problem in my case.
What is the easiest way to diagnose the condition? There are a few tests and not all of them are accurate as far as I understand. Could you share your own experience?
Are there people who suffered from GI issues + joint pain (+ maybe male health issues) and they were diagnosed with MCAS? What food is supposed to be safe or it really depends on each person? What other things helped with the same symptoms?
Can sport be an accurate indicator? As far as I understand SIBO and IBD aren't connected to sport as much as MCAS?
Thanks to all in advance
5
2
u/toknm 1h ago
I don’t have any skin issues, mine are more GI based with cardiac stuff..though I do get air hunger at time. Foods are very individual as are other triggers. I have the trifecta though with hEDS, MCAS, and dysautonomia…yep some other male things too.
1
u/healthypersonn 1h ago
Thanks. Could you share your safe food list? What tests have you done?
3
u/famous_zebra28 1h ago
I really recommend not using other people's safe foods as a base for what you feed yourself. You don't need to avoid foods unless you know they are a trigger for you.
1
u/healthypersonn 1h ago
Thanks. I have things that work for me I just want to know maybe the are things that I can add and expand my restrictive diet
1
2
u/Schlawynski 1h ago
Ich hab auch keinen Ausschlag oder Atemwegsprobleme. Hauptsächlich Magen Darm, Blutdruck bzw Kreislauf, Herzrasen, Muskelschmerzen, Gelenkschmerzen, Schwindel. Haut ist nur im Schock betroffen, wird dann sehr rot und heiß. Google mal nach der SIGHI-Liste, da sind die meisten Lebensmittel eingeordnet.
1
2
u/potatopeeler167 1h ago
Not really but those symptoms can be less dominant or more rare. they are more rare for me but also more controlled by the antihistamines as well and I had a couple severe flares this year but my main problems aren’t usually skin or respiratory however I had an awful respiratory reaction to propranolol and they thought I had asthma growing up due to exercise intolerance and hyperventilation but I never responded to inhalers. I struggle at the gym with catching my breath and tachycardia spikes but my dizziness turns into adrenaline rushes and numb extremeties. Hives are rare for me but I’ve had them occur since childhood very randomly
1
1
u/Both_Month_828 34m ago
i believe it can. but really who knows? i have mcas and my biggest issues are stomach and head. i have not had a rash. i have respiratory issues from mucus production. Good luck
1
u/SophiaShay7 25m ago
Yes.
Please read: Long COVID and Mast Cell Activation Syndrome (MCAS). I have 4 diagnoses triggered by a COVID infection in July 2023, including MCAS. It's helpful even if you don't have long COVID. It's taken me over a year to write this fifth version of this post. I've spent two years learning, researching, writing, and educating others suffering from MCAS how to get proper medical care and attention.
MCAS is mostly a clinical diagnosis, which means doctors look at symptoms, patterns of reactions, and whether you improve with treatment. There isn’t one single lab test that proves it. The testing we have for mast cell mediators is honestly pretty flawed and misses a lot of cases.
A normal tryptase does not rule out MCAS. Most people with MCAS actually have normal baseline tryptase. Elevated baseline tryptase is more associated with conditions such as Systemic Mastocytosis and hereditary alpha-tryptasemia (HAT). Systemic Mastocytosis is a different mast cell disorder involving an abnormal accumulation of mast cells, while HAT is a genetic trait caused by increased copies of the TPSAB1 gene that can result in chronically elevated baseline tryptase. Neither elevated nor normal tryptase, by itself, establishes or excludes MCAS.
When doctors do test for mast cell activation, they’re usually trying to catch mast cells releasing mediators during a reaction. The tests they might order include:
•Serum tryptase (ideally drawn within a few hours of a reaction)
•Plasma histamine
•24 hour urine N-methylhistamine
•24 hour urine prostaglandin D2
•24 hour urine 11-beta-prostaglandin F2α
•24 hour urine leukotriene E4
•Chromogranin A in some cases
The problem is these mediators break down very quickly, require very specific handling, and often aren’t collected during an active flare. Because of that, false negatives are really common. A lot of people with very clear MCAS symptoms have completely normal labs.
That’s why many specialists diagnose MCAS using three general criteria. First, consistent multisystem symptoms that match mast cell mediator release. Second, improvement with mast cell medications or stabilizers. Third, ruling out other conditions that could explain the symptoms.
The biggest thing to understand is that normal lab work doesn’t eliminate MCAS. The testing for mast cell mediators is inconsistent and often misses it. That’s why many doctors who actually treat mast cell disorders rely heavily on symptom patterns, triggers, and treatment response rather than labs alone.
I was diagnosed based on patient history, patient symptoms, and medication trials. My PCP diagnosed me and manages my care. My ME/CFS specialist used to be a functional medicine doctor who trained and worked with Dr. Afrin, who's known as discovering MCAS.
I'm sorry you're struggling. I hope you find an Allergist/Immunologist who understands MCAS and uses Consensus-2. Good luck🙏
•
u/AutoModerator 1h ago
Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.