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Date: | Sat, 4 Apr 1998 01:09:27 -0500 |
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<<Disclaimer: Verify this information before applying it to your situation.>>
Hello everyone, I posted the other day about my bout with adenocarcinoma
of the duodenum (yes this was a cancerous tumor) and how I was still
getting a burning in my skin (feels like salt water running through
it). My skin also is starting to break out in weltz which I had all my
life (dermagraphia) they said was going from the hot to cold
temperatures. My scalp is being affected with sores. Well now I know I
am still getting gluten because in one of the support groups shopping
guides they list milky way LITES as being okay. A while back I bought a
bag, checked the ingredients and they looked fine. Recently I bought
another bag threw them in the cupboard and have half the bag eaten and
just now noticed there is malt in them. I have also eaten honey baked
ham at my sister's on the holidays. Either I am not being strict enough
but I would like to hear from someone 100% gluten free because I need
more instruction. I have this terrible fear in me now that this cancer
is going to come back. I told the dermatologist at a top medical
institution that I must have DH. He gave me some nizoral shampoo and
fluocinol .01% solution and it is not helping. He said "DH is too rare
and he isn't going to test me." (Yet I can get a rare cancer and celiac
disease.) I am so angry inside because of some doctors who aren't aware
of what's going on with this disease. All I have are doctors who think
that I have an anxiety problem. Thanks for all of your support in
listening. It's really too bad there is a well-known documented disease
and patients have to treat themselves. I also would like to mention
that NORD (National Organization for Rare Disorders) has a wonderful
celiac packet that explains the medical disease very well. We should
consider making them aware of these problems so maybe they could
publicize it more.
Elaine/Ohio
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