Hi Kim!!
Nice to have you back!! Sorry you're still struggling with doctors!! Oh how I hate THE DOCTOR GRIND!
It's a shame your local doctor doesn't want to cooperate. FIND ANOTHER! I know it's not always that easy and after a while it's possible to run out of options, but until you do, keep pushing.
I would also try doing a bit of experimentation with your meds too. You might want to consider upping your zantac to 300mg 2x/day. This is what many of us take and I'm sure if you ask Dr. Afrin what he thinks, since the 150mg may not be enough, he may say go for it. I honestly think that if you were to do another colonoscope, this time with your doctor being even more careful in investigating, it might be possible that there are some MC aggregates there. I was shocked when one of my kids showed that he has a focal point of them in his intestines. His tryptase is only 2.6ng!!!! lower than my own!
According to my doctor, the place where we have the most activity is where those mast cells are gathered. The problem we MCAS patients face is that we can be either clonal or non-clonal which means that there is indeed a defect on the MC, however, the suspicion is that depending upon the defect, you may have the aggregates or they may only be activated. They still don't know yet. So, this may be why there can be an increase in normal MCs or there can be focal area of aggregated MCs. It explains a great deal!
Regardless of which it is, it would still be a good idea to have another colonoscope to see what the picture is. If you can find it, then, that leads to further discussion as to what treatment options are then open.
Hope this helps! And good to have you back! Missed you!
Lisa