Just diagnosed with MCAS, but is this normal?

Tryptase and 24hr urine are only “positive” in 15% of MCAS sufferers. Plus - you have to be in a flare for tests to be “positive.”

mine figured it out by elimination of a lot of other things and then a colonoscopy/endoscopy that ultimately led to a definite yes.

Yes I’m sure they didn’t test me for anything. My doctor said he was sure that I had MCAS based on all the questions and e scratch test. I’m taking antihistamine pills and is healing a little tiny bit

They should test 24hr urine for histamine metabolites, blood serum tryptase, and prostaglandins. I was told to take lots of otc antihistamines for a month to see if any symptoms improved.

Usually skin MCAS diagnosis involves skin biopsy. Are you sure they didn’t take a skin sample for biopsy?

My allergist had me do a 24 hour urine collection as well as blood work and allergy tests. That’s how I was diagnosed. His treatment has been helping me so much. I’m surprised you didn’t get blood work or urine collection.

Are they treating you? Because the good docs treat you without testing. The functional doctor who diagnosed me only did a few tests as the mediator tests are not always conclusive and are expensive. I didn’t actually do the other tests until over 6 months later which came back normal. My blood histamine level was my only test that came back abnormal at 110 and now it’s a 8.4. Normal range is under 1.4 I think.