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Subject:
From:
Valerie WELLS <[log in to unmask]>
Reply To:
Valerie WELLS <[log in to unmask]>
Date:
Fri, 21 Sep 2007 17:06:25 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

My Dearly Beloved Listmates,

Oh dear, Val's on her soap box again.  Delete now if you're not in the mood! 
  Here goes....

Some of you folks may have gotten well from what your wonderful doctors have 
done for you, but if you're like me, you've often been disappointed by 
medical doctors.*  I was not diagnosed by a doctor.  I was self diagnosed 
after discussing my symptoms w/ other sick people on a fibromyalgia support 
list on the internet & observing my responses to various dietary 
manipulations.  [My tests for celiac disease came out negative.]  The 
doctors had misdiagnosed me for over 10 years prior to this.  And, after my 
self diagnosis, even though I went to many doctors for help with the many 
complications that were keeping me ill, what I found myself doing was 
spending my time & money explaining to the doctors what had or hadn't helped 
me.  They should have been paying ME for the information I shared!

I was thinking this through the other night & it dawned on me that for at 
least 10 years, I have not received a single solitary treatment, 
intervention, prescription, suggestion, hint, etc. from a single visit to a 
medical doctor that has done a single thing to directly improve my health!  
[Well, one treatment from a holistic MD was very helpful, but I won't go 
into that now.  See below.*]  Yet, I've recovered from a horrid death spiral 
that I seemed trapped in for years.  So where did my help come from?  YOU 
GUYS!  Many thanks for this list & it's sponsors.

I think the internet is what has made it possible for many people like me to 
get well.  At the time of my self diagnosis 7 years ago, I wouldn't have 
found the information I needed to get well at a public library or book 
store.  In fact, when I first discovered that I must be a celiac, I went to 
my local libray & asked for books on celiac disease.  The librarian searched 
the whole Tacoma Public Library system & couldn't find a single book.  An 
attendant overheard her & suggested she search for "gluten." She came up 
with Bette Haggman's cook books.  I was greatful for Bette & her cook books, 
but what I was looking for was REAL medical information about this disease 
and how to overcome it's many complications. The GF diet alone wasn't enough 
for my full recovery.  Even after going GF, I was still very ill.  No doctor 
had been able to supply me with anything that helped.  It was other patients 
on THIS LIST as well as various books, and both non profit and commercial 
websites that supplied me with the information I needed to recover.  [Just 
because it's commercial doesn't mean it can't be trusted.]  But, even the 
many helpful books I've purchased & read were suggested by you, my fellow 
list mates.  God bless you all!

Thankfully there's now a lot more on the library & book store shelves to 
help, but only 7 years ago, this disease was still largely unheard of except 
in little discussion groups on the internet.

Whoever controls the dissimination of information controls the world! [A 
far-fetched humble opinion statement that, of course, can't be proven.  
LOL!]  Right now, it's the pharmaceutical & the giant food processing 
industries that control most of the information that comes to the public 
through many medical doctors* and major media: TV, magazines, newspapers, 
radio, much of the internet, etc.  But the free exchange of information 
between the patients over the internet is still free.  And to me this 
exchange is more valuable than all other sources combined.

Valerie in Tacoma

* To be fair I should explain:
(1) I am NOT anti doctor.  Don't misunderstand me, we need medical doctors, 
even if many are misinformed about the finer details of our crazy disease.  
I'm not totally nuts!  There are many, many instances when people NEED to 
see a medical doctor.  And I'm a strong believer in regular medical care & 
check ups, etc.
(2) one helpful intervention from a naturopathic physician -- food allergy 
testing & the recommendation of HCl + pepsin -- but these interventions were 
first recommended to me from fellow list mates.
(3) another helpful intervention that a holistic MD prescribed is natural 
hormone replacement, sometimes called bio-identical hormones (triple 
estrogen & progesterone).  But I sought out this MD for this prescription 
after reading about it in a book that was recommended by a fellow celiac 
listmate!  So there!  HAH!

*Support summarization of posts, reply to the SENDER not the CELIAC List*
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