Advice appreciated!
Hi all, just thought I'd post this here for any sort of advice.
INCREDIBLY long story short, I am 99% certain that I have an allergy, MAYBE even anaphylactic reaction to gluten(i say this because of how intensely sick it makes me very quickly. I know untreated anaphylaxis ends up, usually, in dying, which is why I only say maybe). I developed this about 5 years ago. I am incredibly certain it is just gluten that causes these reactions, I had done several at home experiments with written notes when I first noticed my issues. I had been tested for celiac about 6 months after developing it, where I was told to eat gluten for over a week intentionally in prep for the blood test, and it came back negative. I wasn't given much guidance from my doctor after that, so I ended up just eating a GF diet for the past 5 years. All of my symptoms I had before were gone, and only returned within MINUTES of eating gluten, eg, passing out/fainting, puking, can't breathe, confused, unable to move, weakness, etc.
My doctor now is saying that one of the only options for me is to do an oral challenge/food trial. I haven't had an incident in well over a year because of how careful I am around food, and I'm concerned that if I do this test, it will impact me more than usual because I have gone so long without exposure to it. I REALLY don't want to do this because of how sick it makes me, but I know I need a diagnosis. Is there any way to avoid this? Has anyone had a similar situation? My doctors dont seem to be interested in my case unless I do this. They think that it can only be celiac, and since I don't have that, they don't believe me as I've never gone to emergency services during a reaction (bad, I know. Shame on me).
I know I should just suck it up and do it, that's the logical move. I wonder if it would appear on a skin pin prick test? I dont know man. I just dread the idea of intentionally harming my health in order to potentially get a diagnosis :-( any words of advice slash understanding will be greatly appreciated.
(Additional info; I like in UK so the NHS is my health care. Idk if that changes anything)
Thanks guys