<<Disclaimer: Verify this information before applying it to your situation.>>
 
>My blood test results came back negative too.  Thus, my biopsy was
>cancelled.
...................................
 
Hi to everyone on the list
 
I am delurking because I find this thread really compelling.  I am gluten
intolerant.  I know this based on the profound difference that not eating
gluten has had on my health.  Over the last year I nearly died from constant
diarrhea, profound weight loss, and body wide reactions to seemingly
everything I tried to eat.  So, on the advise of a kind soul on this list
and my primary doc I stopped all gluten. (and as it turns out -- soy and
lactose) Three seperate reintroductions of gluten caused severe symptoms. My
original GI doc at Kaiser gave me a presumptive diagnosis of Celiac based on
this.  My newer GI wants to rely on the small bowel biopsy and antibody
tests which were done when I had been completely off (and I mean completely)
gluten for almost four months.  They were, of course, negative.  This GI doc
does not want to be confused by the facts.  She is positive that if I had
Celiac that these test would be positive. (sigh!)
 
I can understand the frustration at wanting your medical record to reflect
your correct diagnosis and I can well understand why you want a resolution
to do you or don't you...
 
For me, the issue is clear.  My GI doctor is a dope.  I cannot eat gluten.
Maybe it is because I watched
too many cartoons, maybe it is because I came across just the right kind of
virus, bacteria or toxin and it damaged my gut, or maybe I have Celiac
Disease.  Given the state of my health care provider's education I may never
know, but one thing is for sure: this GI doc can believe what ever she wants
to -- I am not going to eat something I know will make me sick.
 
Maybe I am better able to cope with medical uncertainty because I have had
to deal with being diagnosed with Chronic Fatigue Syndrome for a number of
years.  CFS is almost the ultimate of tenuous diagnosis.  Most people who
carry this diagnosis do share a strong commonality of symptoms and these
symptoms can be very disabling and devastating, but that is all that defines
this thing called CFS: symptoms. There are no lab tests - there is (are) no
proven cause - and although there are drugs to suppress some of the symptoms
it is mostly a case of learning to live with it and around it as best you
can. There is a huge amount of physician ignorance about patients who
present with these symptoms.  I can understand a little healthy skepticism
on the part of the doctor, but when all the usual suspects have been ruled
out and you still have a patient who gets up every day for months (or years)
feeling like they have a terrible case of the flu -- it is NOT, in most
cases,  time to pack them off to the psychiatrist to see why they believe
they are ill.
I count myself as very fortunate because I have a good primary who has never
once inferred that I am maybe a little nuts.
 
Anyway -- I will get off the soapbox now with this final comment: It would
be a grand thing if tomorrow all doctors woke up wise, compassionate, and
completely current --  but it not likely to happen.  In the meantime, I am
going to honor my own wisdom and do what is right for me.
 
Marilyn
 
         Marilyn Melnicoe
       [log in to unmask]
               California