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Hi!  I had posted an inquiry sometime ago about whether to go through with
a biopsy to determine whether I have CD or not.  A couple of days ago
another list member posed a similar question.  We shared the responses we
received, and while I have still not made up my mind, I would like to share
them with you (in no particular order) FYI and because I have more questions.
 
PRO BIOPSY:
 
* confirmation may be necessary to help individual stay on gf diet;
 
* to determine severity of condition (whether cd sensitive, allergic,
  intolerant, or full-blown or "classic CD");
* keep records -- never know when there would be a need for them --
  particularly relevant for lifelong conditions like CD.
 
ANTI BIOPSY:
 
* have to go off gf diet for some time (2-3 weeks) with resultant negative
  health effects;
* long recovery period after going off diet;
* possible negative health effects of biopsy (invasive procedure);
* lack of agreement among medical professionals (and individual variation)
  about time patient needs to stay off gf diet;
* ambiguous results of biopsies;
* gf diets can help conditions other than CD, therefore even if results are
  negative, individual's dietary behavior should not be affected (so why
  bother?);
* expense ($800 someone said);
* skepticism about doctor's motives in promoting diagnostic tests ("to make
  money", "for 'insurance purposes' (i.e.:  for the protection of the doctor,
  not the patient)";
 
MISC:
* gluten challenge and biopsy can be done at any time (so no hurry);
* very interesting variation in responses by gender:  IN GENERAL, women were
  more likely to be pro biopsy and men anti.  (very few responses of courses,
  makes it impossible to draw any valid inferences, but it makes me wonder...)
 
I was very surprised to discover that only one of my concerns (severity of
condition) was addressed by the responses.  Not one person suggested the
increased risk of birth defects (sp. autism), cancer (of the colon), or
osteoporosis as reasons to determine whether one actually has CD or not!
 
Does anyone have any ideas why this might be?  Is the risk so low as to be
insignificant?  Question for those you with autistic children or children
with other problems like ADD (or medical practitioners/researchers or anyone
else with ideas):  If you had known about the CD connection before you had
children, would you have planned your families differently (e.g., adoption?);
are there any precautions/interventions that can be taken during pregnancy to
avert/minimize problems and birth defects in the child (I DO NOT MEAN
ABORTION!)?  What about osteoporosis and cancer?  Doesn't knowledge of the
condition enable us to deal with these concerns as intelligently as possible?
 
I am leaving tomorrow afternoon for a 2 week trip during which time I hope
to catch up on my readings (mostly all of the cd info from this list) and
make up my mind about the biopsy, so I would appreciate quick responses
so that I can take your experience, ideas, suggestions into consideration.
My apologies for the short notice and thanks in advance for your help!
 
Shashi
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