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Testing And Stevens Johnson Syndrome

Isabella

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Isabella Rookie
Isabella
Posted

Hi everyone!

First of all, I have been hesitant in asking my questions in that they may bring on fear to those of us with allergies and skin reactions. Three years ago, I burned my face charred black from antibiotics I took. Now i have become severely chemically sensitive and have reacted to every medication over the counter and prescription since my Stevens Johnson Syndrome reaction. Presenty, I am going through round two of the celiac testing since my gastroenterologist wasn't satified with the tests my neurologist ordered. I need to have a colonoscopy and perhaps a scope done from my mouth into my small intestine. My risk of having another burn type reaction is high, and I want to have these tests done without any anesthesia or medication. Has anyone else done it like this before? I do have an incredible story I do want to tell, although, I wish to wait until I get my results. For the life of me, I can not ever put anymore chemicals on myself. My fear is too great. My skin and eyes and throat are severely sensitive. If someone sprays windex 40' away, it causes me to lose my sight for a lengthy period of time and my face feels like I am going through a house fire anywhere from a day to weeks. Please tell me any ideas you may have for me to get testing done. I am even into alternatives such as hypnotherapy and meditation for the scopes.

I wish you all to feel well soon,

AKA as Isabella

PLEASE look up the Stevens Johnson Syndrome Foundation for more information as the pictures of celiac rashes I have seen often remind me of SJS, and many of us have skin sensitivities. It is good for all of us to be aware of different kinds of skin reactions. Like celiac, SJS is NOT an ALLERGY to medication, it is an immune mediated response. I reacted from sulfa/benzoyl peroxide/clindomycin. I am NOT allergic to sulfa. feel free to email me if you have any questions.

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eKatherine Rookie
eKatherine
Posted

Your GI is not satisfied with the tests your neurologist ran and wants to repeat them? I think that for you, the risks outweigh the possible benefits. Are you gluten-free?

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hi, Isabella,

I have had 2 scopes done (fro GERD, way before I had any suspicion of celiac, so they didn't look for it), both without sedatives by my request. I tend to over-react to all medications (though nothing like what you went through, at least not yet!), and I figured that I'd rather deal with 5 minutes of discomfort than a day or 2 of feeling lousy.

They did spray the back of my throat with a topical anasthetic, which helped greatly, as I have a tremendous gag reflex. I don't know if you would be able to have that or not.

I brought a celiac disease player with headphones and some of my favorite music to listen to, although watching the TV monitor was so interesting, I forgot to listen to my celiac disease>

I had trouble both times with producing a lot of saliva, which made me feel (falsely) as though I cuoldn't breathe. The second time, I discussed this in advance with the doc, who told me to signal her if this was happening, and they'd suction it out of my mouth for me. They did, and that really helped, too.

Good luck--please keep us posted, although if I were in your shoes, I don't know that I'd bother with an endo, I'd just stay off gluten no matter what.

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