Connect
← Return to What testing should I look forward to be properly tested for MCAS
Discussion
What testing should I look forward to be properly tested for MCAS
Autoimmune Diseases | Last Active: Sep 3, 2023 | Replies (45)Comment receiving replies
Your skin issues look just like mine, and mine are likely MCAS. My skin got better taking Singulair, but everyone is different. For testing, I think a good test is 24-hour urine test, which has to be kept constantly cold even in transport--that's the caveat, but Mayo does this test. It also has to be done on a "bad day." MCAS is super common with hEDS and POTS (trifecta).
I have not had a biopsy yet, but they should have done it with my endoscopy. Chemicals from mast cells, even histamine, have super short life so blood tests are usually "normal." I am still in-process so don't know what else to suggest. If you respond well to Ketotifen (a compounded antihistamine med) that is a sure sign you have MCAS, but I couldn't tolerate it. For some Ketotifen is a miracle 🙂
I don't think Mayo treats MCAS, only mastocytosis, which is where you have elevated tryptase, which MCAS patients do NOT--but it's what allergists always want to test for and will be negative 90% of the time.
Replies to "Your skin issues look just like mine, and mine are likely MCAS. My skin got better..."
Thank you so much for sharing! I hope you get your thorough investigation soon. I think this is the blood test they did on me. Interesting 90% is a lot. Is Cromolyn and Ketotifen similar? are this kinda like Benadryl?. I have so much inflammation on my nasal cavity my locals say it’s just allergies and gave me fluticasone. So maybe it would be a good idea for the biopsy in my case. I can’t enjoy BBQ anymore 😓 without itching sore and trembling throat like bolus.
This information is all fabulous! It also feels good to see and hear all the sharp intellects fighting for health and all I can think is, I wished I’d been plugged into these discussions since the MCAS bomb went off in my body, but grateful anyway!. I wanted to say that I used Dr Becky Campbell’s “Optimal Reset” supplements , and still do esp w a flare, I am right back on them. The unusual thing I did was to follow my blood type diet and go on an extreme version of it. Nothing else was working. For O , that extreme version was the Carnivore Diet which is Beef, Butter,Bacon, Eggs. Just that.! I studied many sources on YouTube and tried it. Got my Instant Pot and got right into it. I began to reverse to health in 24 hours after months in bed. I kept it up for a month until I was quickly and actively healing. I have slowly introduced my vegetables , but only broccoli and lettuce are tolerated but back to chicken turkey and less beef. But I’ll tell you whenever I have a flare, I go right back on it an the flare dies right back down after a few days. Becky Campbell and Beth O’Hara have taught me many things but honestly this BBBE protocol of my own has saved me and given me back a life I can do!!
Connect
I've never taken/been Rxed Ketotifen but here's an ironic twist. I had a severe adverse reaction to Singulair. Two days, yes, just two days on Montelukast and I suffered dramatic vertigo for the first time in my life. Almost fell down a flight of stairs at home as I started to black out from my head spinning. Called my Allergist's office and someon on her staff said, "No, vertigo is not a side effect." Well... I'm super in touch with my body, have had exactly zero imagined events, no psychosomatic predilections, the opposite of a hypochondriac, reality based. I felt what I felt. I experienced what I experienced. I did a super basic search on the Internet and learned that one of the side effects of Montelukast is...
VERTIGO! Different from standard dizziness. So, nyah, nyah, nyah, nyah, nyah! As usual, the patient knows more than the medical "professionals."
Trust your body! Listen to your body. You are you!