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Seeking Info and Natural Treatment for Mast Cell Activation Disease (MCAS)

Posted By Pinetreelady (Tucson, Az) on 05/11/2016

Does anyone here know anything about mast cell activation disease? I am asking for a friend who has this condition and cannot seem to find any answers from all the docs she has been to. She has very high prostaglandin levels and high trypsin levels, is in a lot of pain. She also has had high protein levels in her urine, so she is losing protein. Any answers will be appreciated.

Replied by Parnassian7 (Eugene) on 11/24/2016

Hello,

I hope that by now you have already found the information you are looking for, but in case you have not, please read look up Dr. Afrin and his book, "Never Bet Against Occam Razor: Mast Cell Activation Disease....

The basic treatment is taking H1 and H2 blockers. Going on a low histamine diet can be crucial in certain patients. Additonally, certaine plant compounds can sometimes replace the pharmacetuicals (e.g. quercetin and luetolin).

Replied by Carmen (Hesperia, CA) on 03/15/2021
VERY late response, but your friend's mast cell activation may be caused from Ehlers-Danlos Syndrome. However, there are 12+/- subtypes. Not sure where she is in the world, but United States does NOT know enough. UK seems quite versed in it. I believe there are doctors in or near Maryland that treat, one in particular is Anne Maitland, MD, PhD. Ehlers-Danos Society website has a list of doctors that treat. I may need to drive cross country for my own relief. For now, I keep myself in the upright position till doctors can get a clue. Cheers and well wishes to all.

Replied by Susan (Texas) on 04/09/2021
Hi Carmen, what do you do exactly - to keep yourself in upright position?

Thanks so much!

Replied by Carmen D (CA) on 02/12/2022
Hi Susan, sorry for the late response.

I've been detoxing for decades as need arises. My diet is impeccable. En route to Tijuana and driver has air fresheners that feel like they are making head swell. I came to EC for a possible quick fix.

I do get allergy shots monthly, natural extracts of what I'm allergic to, which have helped tremendously.

I did find a doctor here in Southern California whose daughter has Ehlers-Danlos. Dr. Fagan at Casa Colina. They have been a godsend, tho I barely started in December with them.

Well wishes!

Replied by Debra (NSW) on 08/28/2022

I know this conversation was started years ago and is probably resolved by now but I wanted to add something that has helped me tremendously. I have undiagnosed MCAS from prolonged mold exposure. I have severe EHS which is electrical hypersensitivity as well. I have lots of other sensitivities and it would appear an allergy to mold now as my most recent exposure has taught me. I would be totally lost without a natural supplement called PEA (Palmitoylethanolamide). It's a mast and glial cell stabilizer. I take a low dose daily to keep mast cells stabilized but I initially started on the loading dose of 1200mg a day a few years ago when I couldn't eat anything but rice and pumpkin. I stayed on the loading dose for 2 months and it stopped all my reactions. I recently had to have antibiotics again and it set off terrible gut dysbiosis again and severe Fibromyalgia again. Pretty sure I reacted to the mold antibiotics are made from. PEA rebalanced everything but then I got exposed to mold at my partners apartment again and it triggered an anaphylactic reaction with my throat swelling up. I managed to load up on PEA and it took all swelling down. I highly recommend this supplement for mast cell issues. It's available online and through compounding pharmacies.

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