I’ve been talking to my doctor. The histamine intolerance has not been getting any better, although it does tend to lighten up when I’m very, very strict with my diet. But we’re looking into the possibility — which is probably a strong bet — that I have mast cell activation disorder (MCAD). It wouldn’t be a surprise, given one of my nieces has mastocytosis, my mother had serious food allergies that were anaphylactic, one of my sisters has conditions very similar to my own, and her daughter — different niece — has children who have some pretty severe food allergies. Mast cell conditions have a tendency to run hereditary in some families. (Mastocytosis is a rare orphan disease that’s a mast cell condition much worse than either histamine intolerance or MCAD. Histamine Intolerance is on the lower spectrum of mast cell issues, MCAD more in the middle, mastocytosis well on the high side)
If it’s determined that I do have MCAD, there’s really no cure — you just have to manage it. We’re going to try me on a drug that is a mast cell stabilizer. That’s being compounded at the pharmacy right now, and I’m hoping to see some relief from it. Plus, it would just be nice to know what I’m dealing with. My gut says this is probably what I’m facing. I’m not looking for sympathy or advice (please, really–no unsolicited advice, because this is so specific and depends so much on individual reactions). I’m just chatting because I’ve talked to you guys over the years about the food allergies and the Histamine Intolerance and this is one more step along the line.
If it IS MCAS, I’ll be blogging more about it because it’s not a very well known condition and whenever I can spread the word on things like this, I am happy to do so.