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Welcome! >> Introduce Yourself/Share Your Story >> Posting after couple years reading here, allergic to eating and pretty down http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1477798220 Message started by Heather P on 10/29/16 at 16:30:20 |
Title: Posting after couple years reading here, allergic to eating and pretty down Post by Heather P on 10/29/16 at 16:30:20 I have been reading here a couple years now. I had actually read every post at one point. But I've been shy about writing my story. Basically, I was born with this (just got bone marrow test recently but I'm probably MCAD) and have been having reactions since I was a baby. Finally got diagnosed about 3 years ago now. Had my first Masto Storm from eating Fettuccine Alfredo with Chicken and Garlic Bread. Changed my life forever. My entire abdomen burned and then I went on to have 45 symptoms for about 7 months and got back to "normal" after a year. But I could only eat about 25 foods which down to 18 later. When people felt bad for me I would say "I'm good, there are people who have this who can only eat 2 foods or no foods". I was more sensitive than ever and had reactions but with a doctor's help and meds I got pretty normal. I see Dr. Chin in Long Beach. I live in the San Fernando Valley so it is a drive but worth it. I am on H1, H2, and Leukotriene blockers along with Cromolyn Sodium. I was doing really well. Had reactions but nothing too bad and would recover if I rested up after a benedryl IV for which I had a standing order. Could work and go out and pretty much be normal-ish. Then 4 months ago I decided to try getting even better by taking Quercetin. I had 6 hours of diarrhea. Got a benedryl infusion. Was still sick. Went for another benedryl infusion and broke out in hives. That happened a few more times and with the dye-free tablet which was always my emergency helper...so now I am allergic to benedryl. But the worst part is that I have been allergic to all eating now ever since that day. Been in the hospital several times. I am on an IV (can't do full TPN because I am allergic to it) and after not eating for 2.5 months I could only sleep for 45 mins at a time and my brain was definitely not running properly, slow thinking and panicky. So I tried eating and now I can sleep and think better....but I get a reaction every time I eat so I feel sick most of the time. Well, that is about all I can write now. There is, of course, much more to tell but that is the basic story. I am looking at selling everything and living with relatives for a while. If anyone knows of a good roommate or living situation in LA or California even...please let me know. I sort of need a miracle situation as most places that are cheap enough are too loud and smelly for me to tolerate. I look forward to hearing from some of you all and getting to be a more active member of this community. Thanks for reading, Heather |
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