Posted 25 October 2012 - 08:30 PM
Pretty rashy, I know! Plus for some reason, in these pictures I am retaining water, so these are not pretty.
Prednisone seems to keep me from retaining water, so my ankles look a little better today.
Now you know why my sign on is Really Good Scratcher!
Posted 27 October 2012 - 07:49 AM
Posted 27 October 2012 - 09:53 AM
The steroids are why your tests keep turning up negative. And once you go gluten-free then tests will turn up neg. Is it THAT important for you to have an "official" dx? Especially seeing as how you've seen how badly docs misdiagnose it?
I'm sorry but IMHO, I do not think you will be getting completely clear of the rash without outbreaks for quite some time. You say this is how your skin has looked for 3 years. If that is an indication ; then I believe you have it BAD. Those antibodies aren't likely to get out of your skin anytime soon. I really, really, HOPE I'm dead wrong about that but you need to be prepared for the long haul hon.
Stop fighting it. Embrace it. You CAN live without gluten!
Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012
Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.
Sept. 2013 adding back dairy in small quantities & thus trialing iodine
Posted 28 October 2012 - 07:15 AM
Posted 28 October 2012 - 08:48 AM
Mine came 2 years after going gluten-free, I think I had cc from my breakfast cereal. After giving the cereal up it went away but took about 3-5 months to get rid of 99% of it. In Sept I started eating 1-2 mini Lorna Doones a week and the rash is now back but nowhere near as severe as before.
Yes, the itching is the worst and you get adept fast at being a "really good scratcher." Felt like I was digging into my bones.
Three years is a long time to suffer with this I take it you haven't been "officially diagnosed" either, what do your doctors say?
11/2012 tested positve for 1 of the 2 celiac genes
Posted 28 October 2012 - 09:30 AM
I thought it would be helpful to have the Celiac's diagnosis from the docs just for official records. I guess that's not needed for anything except for sceptics that can't believe gluten intolerance is a real thing.
I can make my own chicken stock or broth, and I can probably make my own beef broth too.
I am a great cook, and can follow recipe's really well. I am a great experimental cook. Just ask my hubby. He always tells me how good a dish I make, but he'll know he may never get it again because it was recipe #3257 and I won't remember how to do it again! LOL! I can adjust. I can learn to cook gluten free. I am just going through the initial phase of change right now.
Posted 28 October 2012 - 10:39 AM
You can definitely do it successfully without an official diagnosis, as long as you trust your own knowledge that gluten is poison for you. I am self-diagnosed, and I certainly don't cheat. Of course, half my family has celiac, and accidental glutenings make me ill, so it was easy for me to be sure I had it. I don't particularly trust doctors anyway.
There are restaurants you can trust, too. You'll get the hang of it. It is hard and overwhelming at first, but your health is worth it.
Wishing you healing and an easy transition!
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