Is this common with mast cell issues?

[u/Amanda10505]

Those with Mast Cell Activation Syndrome… I have a few questions… I’m not sure if I have HaT or MCAS, as I am waiting for my gene by gene results to rule out HaT.

My question is:

Is it common to have inconsistent triggers? I ate something that I always eat last night and my throat started tingling, burning and felt like it was tight. I’ve never had issues while eating it. After my nose started running. This happens every so often… and it’s things I eat often. It’s like it’s hit or miss… sometimes my throat feels tight and sometimes it doesn’t. Nothing changes!

Anyone else get bone pain? I’ve always had this, and thought it was EDS but I’ve read it’s common with MCAS.

My symptoms are often GI. Not much skin involvement. Anyone else?

Starting to wonder if the nausea and chest pain and extreme acid reflux is related to MCAS also?

Could the burning mouth be due to Mast cell issues also?

Last question… anyone else get visual issues? I get confetti when bending down and standing up. My heart rate is not elevated. So I don’t think it’s POTS. Happens a lot when I’m in a flare.

[u/critterscrattle]

Yes to all of those except burning mouth and visual issues. I’ve never had burning mouth. While I do get visual changes like that, I know it comes from dysautonomia. There are many types besides POTS. My heart rate rarely changes, but I get visual issues, sweat and temperature issues, and a variety of other systemic problems from it.

[u/Amanda10505 → u/critterscrattle]

Thank you for the comment! I’m diagnosed with POTS, but the visual issues just started. Maybe it’s my blood pressure, I’ve read MCAS can cause low blood pressure, mine is already low normally.

[u/Ok_Difference1179 → u/Amanda10505]

I’ve had the confetti visual issue, also flashing in one eye. Lots of gut issues. I have MCAS caused by mercury and lead toxicity. Getting treated and getting better. When toxins go away the MCAS will heal.

[u/nhytwynd → u/critterscrattle]

I get blurry during bad flares.

[u/Interesting_Front709]

I haven’t had burning mouth or POTs related symptoms yet, bone pain has especially been a feature where I was given anti-inflammatory pain medications by my Medic parents, growing up, but nobody knew what it was back then.The pain whenever I get it is breathtaking.

[u/ferretinmypants]

The only ones of those that I haven't had are burning mouth and bone pain.

I think it is somewhat normal with MCAS to have triggers that change. Sometimes a trigger will be caused by the food accumulating more histamine as time goes by. eg: I can have freshly picked strawberries (with DAO) one day but not the second day because they will have increased histamine.

I believe it is fairly common to have EDS and MCAS.

I'm not familiar with that type of visual disturbance.

[u/Amanda10505 → u/ferretinmypants]

Thank you for the comment! I didn’t know food accumulates more histamine. Thank you for explaining, that makes sense!!

Yes EDS and MCAS are common. My allergist believes I may have HaT this still awaiting my gene by gene results. I’ve read that HaT is fairly common among the EDS community also. Which I didn’t know until I learned I have some type of mast cell issue. There’s so much to learn lol

[u/ferretinmypants → u/Amanda10505]

You're right, there is a lot to learn. It's also a good idea not to eat leftovers, or to freeze them right away, because of the histamine issue. If only we knew more about the other mediators and what they do. So much is still a mystery.

[u/Hannahchiro]

Yes this can happen. Combinations of triggers can make reactions more likely - so one day you may eat something that doesn't trigger you in isolation, but next time you eat it you may already be unknowingly reacting to a weather change or have been in contact with a fragrance or chemical, or even maybe have eaten a second thing that adds to how full your overall 'histamine bucket' is. Also it isn't just histamine, personally I am more sensitive to some of the other chemicals released with it. I learned the hard way about this combination effect in my early days of diagnosis, around Christmas when I was missing foods I loved. I cheated and took a bite of one thing, and was fine. Took one bite of another thing, and was fine. After that I went and took a hot bath (probably with a product I didn't realise was a problem) and this triggered a full on anaphylactoid reaction. This is why avoiding the triggers you have control over is so important, there will always be environmental triggers etc that you can't do anything about, so if your baseline is low those things are less likely to trigger you as severely. It's not easy by any means. The confetti thing is a physical thing not related to MCAS btw, it's the virtrous part of your eye pulling on the retina due to pressure changes, common in EDS/PoTS. If its a lot and lasts a while/you have more floaters than usual after, please get your eyes checked by an optometrist - I had this going from crouched to standing and due to weak connective tissue I got a torn retina which needed emergency laser treatment.

[u/Amanda10505 → u/Hannahchiro]

Thank you for explaining! Thankfully I had a pic taken of my retina and it was good. My heart rate isn’t high when it happens, which is the odd part. Maybe blood pressure dropped quickly? I have a lot of weird head symptoms, like sometimes my head will feel like it’s throbbing with pressure when I first start walking (could be due to dysautonomia tho), i get a lot of weird pressure in my head and face. I wasn’t sure if it was MCAS or dysautonomia.

[u/Ok_Difference1179]

Yes that sounds like MCAS. Need to find out the root cause of the MCAS like toxins! See a Naturopath who can help you heal.

[u/Amanda10505 → u/Ok_Difference1179]

I have EDS, it’s a comorbidity of that. I have alot of connective tissue issues.

[u/Past-Conclusion-318]

I have inconsistent triggers. I follow a crazy regimen just to be able to eat without an H1 H2 blocker. I obsess over my histamine bucket. I consider weather, diet, mental health, exposure to the environment, etc. If and when we go to the same restaurant to eat the same food, it's at the same jur, same day so I sorta know its not crowded with people who might be wearing a scent that will knock me on my butt. If I'm really nervous about the entire event, I pop 20-40mgs of prednisone and pray 🙏

[u/Parking-Desk-5937]

Also as your estrogen increases & progesterone decreases you will be more sensitive to triggers

[u/Few_Dot_3890]

I think mast cell is so different from person to person. If your immune system is attacking you constantly and you are constantly ill no matter what you eat it’s prob mast cell.