I really should be cleaning my house, but...
As you know I've been starting to read through the book that Dr. Castells edited, "Anaphylaxis and Hypersensitivity Disorders." Since the chapters are written by different authors, it really gives you a sense of how much is unknown about mast cell disorders and how much the researchers disagree about certain points!!
For example... there's an entire chapter about "idiopathic anaphylaxis." The basic premise is: give them some steroids and EpiPens and send them on their way... this disorder has a "good prognosis." Drives me crazy!!! It does NOT take into account just how disabling IA can be... or how much you can improve your quality of life through medications (other than steroids) plus lifestyle changes. We know better!
Anyway... other chapters treat the topic of IA in a very different way. For example, the first chapter on the definition of anaphylaxis (written by Phil Lieberman) recognizes three basic categories:
- Anaphylaxis due to exogenously administered agents (e.g. drugs and foods... I would also include radiocontrast)
- Anaphylaxis due to physical factors (exercise, cold, heat, sunlight)
- Idiopathic anaphylaxis
In this case, "idiopathic" doesn't really mean "I don't know"... it just means anaphylaxis triggered by some unknown factor inside the body. This could be estrogen, progesterone, FceRI antibodies, complement, bradykinin, thombin, a combination of these factors... there are many clues, but there is still so much research to be done! I say that my mast cell disorder is autoimmune (so does my hematologist), but in truth... nobody has studied the role of FceRI antibodies in systemic allergic reactions (anaphylaxis), only in chronic urticaria. There was ONE experiment... involving 10 people... and because they didn't find what they were looking for, they gave up.
Anyway... I feel better about the idea of "idiopathic anaphylaxis" now
I just wish they would get rid of the word "idiopathic." To regular, clinical doctors the word "idiopathic" sounds like "no big deal." Totally WRONG, but you have to educate them on why it IS a big deal... it gets very tiring and frustrating.
Heather