Hi. What is the reason that you are having an endoscopy and colonoscopy? Is it to look for things other than mast cell disease?  I ask because that is not normal testing when looking for mast cell disease. I have had both tests but that is when I had never even heard of mast cells and my doctors had no clue that mast cell disease even existed. So, they were just testing anything they could think of. Once I got to doctors who knew about mast cell disease, they focused on blood tests, my symptoms, my reactions to histamine blocker meds, and eventually a bone marrow biopsy. They never suggested endoscopy or colonoscopy testing.

There are specific places from which doctors extract bone marrow, the most common for diagnosing mast cells would be on the iliac crest, the hip bone in the back.  I'm not sure why, but that's the usual place.  Yes, they can go into a spot that doesn't have a lot of mast cells if they aren't spread throughout a bone.  Conversely, they can aspirate clusters of mast cells which are not typical of their presence in other places in the bones.

So, a bone marrow biopsy is one factor considered when making a diagnosis.  Obviously, if there's a finding of abnormal mast cells and/or an abnormal number and/or clusters of mast cells, it might verify the suspicion of mast cell disease.  Other factors and test results will be included in a diagnosis, such as tryptase and other things tested in the blood.  There are several diseases that need to be ruled out, too.

Good luck!  I hope all goes well with testing and you get some answers.

Hi, I got a bone marrow bx a month ago. I asked my doctor why it is taking so long for the results. She finally called the pathologist after still showing "pending" and on my prompting. She says there are no mast cells in my bone marrow?? But my tryptase is 32. She has ruled out cutaneous an SM. I suggested could it be isolated in the stomach since I initially responded to H2 blockers? I suggested a biopsy of my stomach mucosa to diagnose. I may have MSAS.