I think I have mast cell activation syndrome

[Ceriane]

I think I might have mast cell activation syndrome and I’m really worried. 4 weeks ago I had an allergic reaction to a lip balm. Initially it was just a contact allergy and then I went into anaphylaxis. Since then my skin burns if I use makeup, skincare and I get what feels like anaphylaxis threatening if I use toothpaste so I don’t even know what I can use to clean my teeth. Other health issues are B12, vitamin D and ferritin deficiency (all untreated at the moment) and I’m perimenopausal but they can’t give me oestrogen as yet in case I react to it. If I so much as clean my teeth I get swollen gums, tingling lips and my heart races and I feel sick. I feel so drained and unwell.

Sorry your'e experiencing that. Has this just come on suddenly?? How awful

What are the doctors saying? Are you taking antihistamines?

It came on about 4 weeks ago. I was fine before that. I'm taking daily antihistamines for 12 weeks, I have been referred to immunology and dermatology, they think my immune system has gone into overdrive and I'm producing a lot of histamine. I've been advised to leave all make-up and skin care off, however I'm also reacting to toothpaste.

If it's any help, all the research I've ever done with dentists, while they'll recommend a 1450ppm fluroride toothpaste, they will also tell you that just the act of brushing is most important. So at least you can brush your teeth. Just use water.

You poor thing. Sounds very scary. I imagine it might take some time to bring it under control. From my limited knowledge (MEcfs can overlap with mcas so I've read a bit).

I believe the antihistamines for mcas are different to the usual ones for hay fever and allergies?

Could a touch of baking soda be tolerated I wonder?

You could try an SLS and flavour free toothpaste like oranurse
I am on Xolair which is used off label for MCAS so they may offer that, if they do then don’t be scared by the giant list of side effects! I have a mild headache and that’s it

Might be MCAS. I have MCAS had it since I was a kid, im allergic to loads of random things including the heat! You need to ask your GP for an allergy test, but it could also be that you’ve had a reaction and now paranoid about it happening again.

Sounds unnerving and I hope you get the bottom of it. Growing up we used to brush our teeth with salt (dab damp toothbrush in saucer of salt, then brush).

Thank you. I just feel so weak and drained.

Do you have any MCAS co morbidities like EDS or hypermobility?

I hope you get it resolved and treated soon.

If you can, you can also dip a wet toothbrush in some baking soda (unless, of course, you're reactive to that too).

Hi OP, there are a few doctors online who talk about this a lot.
Look at Dr Karan (NHS surgeon) also Dr Rubin (US Consultant)

And echo the PP who talks about connection with other things.

MCAS/Hypermobility/NeuroDivergence/POTS/Lipodema are all connected in one massive overlapping venn diagram.

Thank you. I am using salt for now, not the same as toothpaste though. I don't have any of the co-morbidities mentioned, however I do have B12 & Vitamin D deficiency which I'm aware can cause histamine levels to go crazy in some people.