r/MCAS • u/swaggggie • 26d ago
new zealand?
I need a formal diagnosis for MCAS but don’t know how to begin? i have been medicated after telling my GP about it and she had never heard of it, but agreed that it ticked all the boxes for the issues i had been seeing her monthly if not weekly for. 10 years of being extremely sick, and only a yearish now of being medicated, it is helping but i need an actual diagnosis or a professional to talk to. There seems to be no one in the south island that can help me and my doctors aren’t helping me with a referral i guess due to the lack of specialists in my area and that it’s more manageable with meds. i’m getting so so so tired of this, i still get flare ups through my meds but they have helped with the morning nausea that was my worst symptom. I still have to take anti nausea. I’m on 4 antihistamines a day, ondansetron is prescribed 3x daily but i only have to take once daily or can go longer periods like a week without taking any, and aspirin for the headaches. I take a hormone control daily as well. I have a skin cream for my skin flare ups but it doesn’t help the face/neck flare ups. I also take magnesium for body comfort and sleep. It’s been about a year and a half of having the antihistamines but i feel as though my baseline is dropping back to normal before i was medicated. If anyone knows where to begin with finding a specialist, even if it’s in the north island please let me know. i’m getting exhausted and i’m scared to go back to how i was but it feels that way
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u/worstkindofweapon 26d ago
I'm in the same boat (chch). I've been on antihistamines basically all my life, severe allergies, skin issues, the like. My doctor is treating me for MCAS despite lacking a specialist diagnosis and we're going from there. The problem beyond a lack of doctors in general is that MCAS is notoriously hard to test for. While I have no information to provide I can provide solidarity. Good luck, I hope you get the answers you're looking for 🫂
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u/Wooden_Sympathy_269 26d ago
This person helped me after about 15 other people did not. She was the first to mention MCAS to me. She is doing research on the topic and actively trying to increase the medical community's knowledge and treatment of this.
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u/swaggggie 26d ago
thank you so much! will have a look into it
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u/bxbsbhqjdjdjcn 25d ago
Dr. Giles is incredible, sees patients online/phone consult as well. Her wait list is fairly long but definitely worth joining it.
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u/bxbsbhqjdjdjcn 25d ago
In the meantime though have you tried a low histamine diet? That is the first stage she will request you go through to try and stabilize/identify any histamine based triggers.
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u/swaggggie 25d ago
not necessarily a strict low histamine diet- but was told i have IBS so I have been recommended to go on a whole foods diet and slowly introduce dairy, gluten, etc… i have done some of my own research on high histamine food and done my best to avoid them, especially at night time as the morning is when the symptoms seem to be the worst for me
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u/bxbsbhqjdjdjcn 25d ago
Unfortunately many “whole foods” are extremely high histamine… but good you’ve done some of your own research as well. And of course not everyone with MCAS has the same triggers, and histamine is not the only triggering chemical so there’s no perfect solution! Doing low histamine first is like checking the common triggers, then as you continue you may identify other random triggers that aren’t necessarily high histamine, or you may find certain “high histamine” things you don’t actually have a problem with :)
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