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Many, Christine <[log in to unmask]>
Date:
Tue, 7 May 2002 15:58:19 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

I had mentioned in my previous email - "All Grains summary", that I would
that I would elaborate on my condition. I am not sure how many people do
this...but I am for 2 reasons...1)There may be others whom I can help based
on what I know about my other disease...2)To meet others who have both
diseases.

Again, I have only found out that I have Celiac a couple of weeks ago. I
have done a lot of reading through the email that comes in every day, and I
have visited countless web-sites...the stories that I have read...the
problems so many of you have faced with Doctors...it is/was SO familiar to
me. I was initially worried when I found out I have Celiac. I thought, "Oh
great, another disease. Now I have to learn about it, and what kind of crap
am I going to go through with Dr's...worse yet, the people that I have to
deal with or encounter?" I didn't know what to expect. But I quickly learned
that the experiences were no different then what I was already accustomed
to. And I learned that I have 2 diseases that do not get the proper
recognition that they should/need. And I learned that there are wonderful
people out there who work together, and educate eachother...that there is
this "underground" network of support and sharing. It made things so much
easier for me.

So, what do I have...Chronic Lyme Disease...And what I wanted to share is
this. So many of the symptoms are the same...I had to look back, and I
realized that the Lyme infection must have triggered the Celiac...and these
two have been holding hands in my body for the past 21 years. I was lucky to
find a dr.(Lyme)who helped about 10 years ago...but never thought to look
for Celiac...as a matter of fact, the Celiac dianosis was a complete
surprise...but boy did it explain alot -- about our whole family on my
Mothers' mothers' side too. For years I had these awful rashes on my scalp &
behind my ears & in various places on my body...I have since figured that
out (DH). After the testing that I have recently received...no blood test
nor biopsy's...Things began to fall into place. Having had the Celiac
uncontrolled all of these years, my problems are now all pain and joint
degeneration. If I have gluten (now that I have been GF), all of the muscle
cramps, aches & pains, the tingling and feeling of loss of circulation, the
hyper-sensitivity, fatigue...all comes back the next day. At least that's
how it has been so far. I still have the Chronic Pain...but it is deeper.
Ultimately, the Celiac seems to have magnified the Lyme.

Now I fully understand this to be a Celiac group...but the weather is
getting nice...Spring & Summer is on the way...so many of you seem to be
doing so well with controlling your CD...please protect yourself from
LD...you know that doctors are not knowledgable about CD...believe me, the
information about LD that most dr's have is not what it should be...LD is
very down played, and there is way too much wrong info...Folks, there is no
cure & tests are highly inaccurate...I would hate for any of you to have to
be burdened with this disease too...because you will have to go through the
rigamarole all over again.

Hopefully I have shortened things enough to explain my case w/out
overstepping my bounds...

Also, if there is anyone who does have both...I would really love to hear
from you, and find out what you are doing to deal with both diseases.

I will leave with that...thanks to all for their time & information

Christine

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