Mast Cell Activation Syndrome: What treatments help you?

Hi Kurt, and welcome. I moved your post to this existing discussion about mast cell activation syndrome (MCAS):
- Mast Cell Activation Syndrome: What treatments help you? https://connect.mayoclinic.org/discussion/mast-cell-activation-syndrome/

I did this so you can connect with other members like @rhawk314 @juy77 @frenchie333 @hsminc.

For people trying to understand the difference and the relationship between MCAS and mastocytosis, I found this article from the Mast Cell Disease Society to be helpful.
- Mast Cell Disease: Overview, Diagnosis, Classification https://tmsforacure.org/overview/

Kurt, were your suspected episodes of MCAS linked to a Covid infection? Are you dealing with long Covid?

I'm still not dx'd. I was traumatized by my experience with medical professionals during my first serious episode, so I wasn't motivated to find help (more like advoidant) during my second post-covid. After 18+ months with my first episode, I found two books on Histamine Intolerance and MCAS (Never bet against Occam by Lawrence B. Afrin M.D), and managed to recover over a 6 month period.

I still have chest tightness and breathing difficulties (pre-covid, but covid was no help), so starting to look now. I noticed that many of the MCAS medications are used for Asthma and many MCAS patients report similar issues. Perhaps it's time to connect with a specialist.

Ah, cool. Regarding treatments: loradidine and quercertin. I keep a fairly healthy diet and lifestyle. During an episode, I'll move to plant based anti-inflammatory, low carb (keto) diet which is immensely helpful. I also found that ashwagandha supplemtent helps with the MCAS related anxiety.

Revisiting your post for good reason. Wondering how you're doing with the herbals for a VERY good reason. Recently learned that man-made antihistamines can be antagonistic toward choline of various forms. Choline deficiencies can be an indicator of future dementia! What a nightmare. In fact, a recent test indicated I am currently deficient in choline... Because of 18 months of diarrhea or because of the long-term use of antihistamines???

Very recently learned of other natural antihistamines. Have yet to research all of them. Some are part of my daily regimen for other reasons, my being ignorant of their antihistamine benefits. Here's the list with brief comments:

Forskolin (have to research)
Quercetin (been taking for years in a blend with Bromelain)
Astragalus (been taking for years for immune strength, didn't know it's antihistamine effect)
Vitamin C (no need to comment except that too much can cause "loose stools""
B. Longum (I assume this is a probiotic that's no to low histamine)
B. Infantis (I assume this is another no to low histamine probiotic)
Erythropoietin (Huh? Never heard of this one. Have to research.)
Theobromine (related to tea? I no longer use organic green/matcha tea in my morning shakes but do take EGCG daily)
Guarana (I know of it's energy boost--unbound caffeine that can be gently metabolized)

Now that I've learned the cognitive downside of OTC and Rx antihistamines, I would dearly love to imitate you. Oh, I do take Stinging Nettle. Will check into Holy Basil and Chinese Skullcap.

I apologize for failing to do my research first to share more meaningful info but wanted to share what I could ASAP.

Final note: Because of you, even with low histamine foods, I am freezing all leftovers IMMEDIATELY!

Wish I could thank you face-to-face! Clicks on a keyboard will have to do.

Hey, rhawk/Robert! Delighted to share what has worked for me.

2 capsules of DAO enzyme with every meal and snack. Even if those meals are low histamine, I do not fail to take that histamine-digesting enzyme.

I take a variety of herbal supplements that have antihistamine benefits. Quercetin (with Bromelain, which helps our bodies digest the antihistamine Quercetin) and Stinging Nettle.

I have been taking OTC antihistamines for decades: Claritin 10 mg (an H1 blocker) and Tagamet 200 mg (an H2 blocker). Famotidine is another OTC H2 blocker.

I also changed my magnesium to a less laxative form. I even changed my calcium supplement to calcium carbonate, known to cause constipation. Now? On average, I'm "normal." What a blessing. Will be looking into magnesium taurate in the future since I recently learned my current magnesium blend has some problematic artificial ingredients. No diarrhea so it's a success but I do my best to eat and drink "clean."

Result? Getting back to normal in terms of diarrhea. Cannot recall the last time I suffered full blown, gushing, watery diarrhea.

Yes, my diet is very restricted but worth the trouble. As I mentioned elsewhere, I do not live "at the table." I want health, vitality, longevity. I want to be able to leave the house, run errands. I want to keep my food and myriad supplements in me long enough to enjoy their benefits. I want to regain a few more pounds.

Feel free to consider all of the above FWIW (for what it's worth).

Final comments: I was diagnosed with cutaneous masto over 40 years ago. Biopsies indicated I was born with 1,000 times the normal number of mast cells in my skin. After the Pfizer double jab about eighteen months ago, my well controlled, strictly cutaneous masto escalated to MCAS. And, indeed, a worldwide study with compilation of data from dozens of countries indicates the Pfizer vaccine was the worst in causing a worldwide dramatic spike in food hypersensitivity. Lucky me!

Forgive my reply, Kurt, where I may have asked again why you must avoid DAO and H1, H2 Blockers. Read you answer above. Lyme Disease is tough to overcome!

#God's Pharmacy First
#Mother Nature Provides

Yes, you must do what is right for YOU!

Hi
Ive had MCAD most of my adult life without a formal diagnosis until recently as a result of getting Covid and having post Covid issues and lots of labs and testing , we were able to get the elevated Tryptase during one of the labs and get that diagnosis.

For me I do best when I avoid complicated foods and medications I dont absolutely need.
Things with more than a few ingredients for foods depending on the day and how much can set off hours to days of misery.
Also staying on H2 blockers , Sodium Cromlyn can help GI issues and if you have respiratory issues Cromlyn Inhalers help but you have to order them via Canada since the US doesnt carry them anymore. Find what works for you and do your best to stick with it. Avoiding things that trigger symptoms is the key , but that can be tough to do sometimes.

Good Luck!

An you ask your friend what treatment Mayo had her in that helped? You can’t eat food, go into hotels or stores because the disinfectant sprays trigger the facial flushing and shortness of breath.

Have you found any help? Check Stanford b/c they have a mast cell activation specialty clinic per another persons post

Where does one get sodium chromalin?