Mast Cell Activation Syndrome: What treatments help you?

She has not had any treatment to-date. It is not systematic. She is a physician (not practicing) herself.

I am sorry.

Have you found anyone yet in So Cal? I thought I did in Encino, but he keeps hedging on getting me either Xolair or IVIG that he recommended, so I'm getting no where and question his actual knowledge. Where did you get Xolair injection? I'd at least like to try, I'm miserable every day. I have likely comorbid conditions like POTS and connective tissue disorders.
I was at Mayo, Rochester for GI issues 4 years ago, I didn't think they treated MCAD, only mastocytosis, a different diagnosis.

Hi rhawk314,
I know the post is older but may be helpful to some.
I used to look like continents were all over my body. Not fun. I found a post on inspire that recommended “Vital Nutrients Aller-C” for Mast Cell and angioedema. Well I looked it up on Amazon and read all reviews and felt this would really help. And it did!! I also use and have learned what foods to avoid through this app: Food Intolerances by Baliza. It has a strawberry 🍓 on front of app in the apple store.

DNA / Heritage- I forget one or the other Sweden or Switzerland:
https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
Watching the diet and Aller-C changed my life.
Hugs to all

Thank you, rhawk314! I will check it out immediately. In the meantime, an update!

With DAO enzyme I am now back to eating anything and everything! I was blessed with almost immediate results rather than the typical 60 days. And the improvements just kept on building!

I've even ceased taking my H2 Blocker which depletes the body of choline. Deficient choline can be the root cause of dementia!

Now? Just one Claritin in the morning and 2 DAO capsules with every meal. Yes, I'm still taking herbal antihistamines, too.

Sooooo grateful and just had to offer hope to others!

What is the brand and name of DAO your taking

What dr is at the Mayo clinic for MCAS.....I was told they are not taking anymore MCAS patients

Hi @dmearney There are a number of doctors who treat Mast Cell Activation Syndrome (MCAS) at each of the Mayo Campuses. Demand for appointments sometimes exceeds the openings available but you won’t know until you try.

Here is a link to the Mayo appointment page where you can find the numbers for the campus most convenient for you. It starts with a simple phone call.
http://mayocl.in/1mtmR63
~~~
Also, you might want to check out this informational article from Mayo regarding systemic mastocytosis. Symptoms, diagnosis and treatments…on the very last page is a list of specialists who treat this.
https://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/symptoms-causes/syc-20352859
Have you been diagnosed with MCAS?

I too have been told by several sources that Mayo MN refuses to see MCAS pts. I see nothing posted specifying any Mayo MN dr diagnosing or treating MCAS. I had thought Mayo's mission was to see, care for anyone. I see nothing here at odds w/ what's been reported to me beyond empty assertions.

You're right that there are no posts here naming specific Mayo experts treating MCAS. That's because of Mayo Clinic's unique team approach to care. Mayo Clinic doctors from several medical specialties work together to provide the best care possible. The team may include specialists in allergic diseases, hematology, dermatology, gastroenterology, pediatrics, neurology, endocrinology and pathology.

Mayo Clinic has more requests for appointments than available openings and unfortunately cannot see everyone.

@zzzzzzzzzz have you called Mayo Clinic yourself to request an appointment?

Is ashwaganda safe for mcas, have you heard of others use it with no problems?