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From:
Moira Sheehan <[log in to unmask]>
Reply To:
Moira Sheehan <[log in to unmask]>
Date:
Mon, 16 Jan 2006 13:23:33 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

To Whom it May Concern and please forward to Ms. Truss,
 
For those of us with biopsy diagnosed Celiac Disease, I take great umbrage
from the news of her commentary in the book "Talk to the Hand".  First and
foremost, the title of the book connotes a lack of regard for the situation
in which most CD patients find themselves.  Through no fault of our own, but
only a genetic predisposition and a triggering event, we face a lifetime of
dietary avoidance in order to maintain some semblance of health.  For those
who were diagnosed too late and have suffered permanent physical damage from
this disease, it is still a life long commitment to a diet in order not
incur additional physical harm.  Personally I feel fortunate to have a
treatment for this disease that only requires a dietary change though I was
undiagnosed for approximately 16 years and do not know what the long term
damage has been and will be.
 
"I now can't abide many, many things, and am actually always on the lookout
for more things to find completely unacceptable. Whenever I hear of someone
being 'gluten intolerant' or 'lactose intolerant', for example, I feel I've
been missing out. I want to be gluten intolerant too. 

I mean, how much longer do we have to put up with that gluten crap?"

How dare she?  For shame!  Before we carry out the sentence she desires: a
life of Gluten Intolerance, I would like to send her pictures of me when I
was 15 years old, was 4 feet, 4 inches tall and weighed 70 pounds.  (These
memories were brought back painfully this past weekend when I was visiting
family and my soon to be 6 year old niece informed me that she was now 4
feet 5 inches tall.)  I would like her to nurse me through an episode of
accidental gluten ingestion.  I would like her to witness the hours of
vomiting while I am not being able to rise from the bathroom floor.  I would
like her to then witness the 2 to 3 days of my concomitant diarrhea.  I
would like to see her witness the 'knowing' glances of those who have not
seen the consequences Celiacs face when we tell them that no, I can't use
the butter you do because you have used it on other pieces of bread made
with wheat because I will get sick.  I would like her to experience a visit
with relatives, a trip to a hotel, a cruise, camping trip, a simple dinner
out while not knowing if she could trust the tiniest morsel she placed in
her mouth.  If she can witness these and still stand up to her statements, I
will give her a written apology.  I doubt that would happen.
 
"...gluten crap..."  Oh my, this displays a lack of sensitivity that defies
all sensibilities.  Apparently she did not do her research.  I have done so.
Please look at the following websites for more information.
http://www.nlm.nih.gov/medlineplus/celiacdisease.html
http://cpmcnet.columbia.edu/dept/gi/celiac.html
There are so many more.  I encourage Ms. Truss to spend some time
researching the diagnoses of those she chooses to disparage.
 
In summary, we can surmise that there are people out there who state they
have a gluten intolerance without a diagnosis.  In fact they do exist.
However, CD was not recognized in this country until recently and we were
diagnosed as being or having: malingerers, psychosomatic illnesses, poor
dietary histories to explain low weights, unexplained gastrointestinal
infections, unexplained bacterial infections, anemia, Munchausen's syndrome
and the list goes on.  Please do us the service of acknowledging this
DISEASE and recognize it is not a chosen CONDITION. 
 
Could there be something else to explain the undiagnosed?  You tell me after
you have done some research on history and current medical knowledge.
 
I ask that you provide a written retraction for the untoward statements in
this book.  It is the least you can do. 
 
Regards,
Moira Sheehan, MS

 


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