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Posting after couple years reading here, allergic to eating and pretty down (Read 2434 times)
Heather P
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I'm grateful to be here.

Posts: 3
Los Angeles
Posting after couple years reading here, allergic to eating and pretty down
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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May we all feel better soon,
Heather
 
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