So, here is my question – is there any other testing we need to be doing right now? I sort of feel that the testing is likely to be normal and the symptoms are what we need to be looking at but docs have to do the testing. Very frustrating – the doctor and nurse both seemed to feel that I should be over-the-moon happy because my daughter most likely doesn’t have masto. Ummm, great. But, if she has all of the same symptoms and you won’t treat her and she remains miserable… Well, forgive me for not thinking that is awesome!
Thanks for all of your help, Dr. D – Emily’s life has improved so much since we found your theory. We will head into 2012 with hope, something we really did not have a year ago!
Hi Beth, so sorry I missed this question! Most, but not all allergists are puzzled by mast cell disorders. It doesn’t help that the protocol keeps changing!! In mast cell activation syndrome mediator (-), all of the labwork can come out normal, but it the patient has symptoms (she does) and she responds to treatment (she does), then she should be treated just like a mediator (+) patient. The tests they’ll want to run (you got tryptase, that’s good) is also IgE, prostaglandin D2, and a urine-methyl-histamine — after an episode if possible. A (+) response on any of those will put her in either the mastocytosis category or MCAS mediator (+) category (and she gets a free pass to a mast cell specialist). Dr. Castells says that some of the sickest patients, though, are mediator (-)! They just need to do more research… I hope this helps! 🙂