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    • CommentAuthorVaxxine
    • CommentTime6 days ago
     
    This is my first post. I've been reading threads here for a few years. The info here has helped me recover in ways I never expected. So first, a HUGE thank-you to all the members who shared their life stories and challenges. We've never met, but you've changed my life profoundly.

    I am diagnosed with MCAD (mast cell activation disease) and primarily react to salicylates. It took me about 2 years after my diagnosis to narrow down the exact trigger of my reactions.

    Many accounts I read here describe mast cell degranulation, resulting from (common) mast cell triggers. The situations describe my life to a T. It feels like looking into a mirror. If you're a member without a diagnosis and searching for possible answers, having a few simple tests for MCAD run may be a good idea. There are stabilizing medications available that seriously help. Maybe you can find some relief. It's worth a shot, anyway.

    There's a great website called Mast Attack with a series of articles about the tests (blood and urine), and info to take to your doctor. Of course, there's info about the symptoms and medications, too.

    After eating only chicken, butter, cream and salt for 18 months, I finally started a mast cell stabilizing Rx called Ketotifen. I feel so much better, and I just started adding back new foods. Thrilling!! It's been life-changing for me. Maybe it can help you, too.

    I don't think links are allowed here (?) but I keep a public Google doc journal of my experience, updated daily here: bit.ly (slash) ketotifen. Sometimes it comes up in a search. Try searching for "Ketotifen Experiment"

    Godspeed.
    • CommentAuthorlindyd
    • CommentTime2 days ago edited
     
    Hi vaxxine
    I have been taking ketotifen (zaditen) for a number of years now..it has been a life saver and has allowed me to return to a semi normal life. I am much less reactive and and have added back quite a few foods that I couldn't eat.
    If you do a search on this forum you will find a lot about ketotifen and probably many of my posts from years ago!
    I am pleased to hear it is helping you too. I'll take a look at your blog when I get some spare time.
    Lindy xx