It took some time to be diagnosed with MCAS. It took two different allergists to finally come to this conclusion. I was a mystery for a while but the MCAS was a diagnosis the docs were hearing more and more about. I began to research on my own as well. It was a good day when I was told ‘This is what is wrong with you and why you keep ending up in the ER.’ The very best thing I have taken is an H1 and H2. For seven years my ‘system’ seemed under control. I was taking Xyzal (H1) and Xantac (H2). Then Xantac was recalled. Xyzal also began giving me a hangover. All antihistamines do. I stopped suddenly and have tried to use a different combo as needed: my H1 can be Benadryl, Zyrtec, or Allegra and my H2 is Pepcid. Nothing has ever worked as well as that first combo years ago. My allergists warned against me using the H2 meds long term. So I typically use Benadryl and Pepcid as needed. I watch my diet closely, try to avoid stress, try to avoid being in the heat too long, and use a low dose of prednisone if I need help in clearing up hives (this is not very often). MCAS is like hypothyroidism in that they are a curse to have. After 9 years, I’ve settled into a pattern, a lifestyle, where I can usually keep my histamine level low enough that I won’t have an attack. Usually.

To stop the mast cells from over producing inflammation mediators like histamine it’s helpful to know the underlying causes of what’s causing them to be overactive in the first place. Do you know what the underlying causes are?

Diaries of what you eat, meds taken etc help. I have been on many elimination diets etc. I kept lists, documented when symptoms were worse and looked over the lists monthly to see trends. I identified cellulose as a major trigger. Once I identified my major triggers, I try to avoid them. Being a veteran, my health care can be shoddy. The va was assigning me new primary care dr every 6 months. It really set back trying to find diagnosis and continued treatment.