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Thank you for all the replies I have received over the last week
concerning my deliberation over getting a biopsy.
I received about 30 replies to my query, all of them were pertinent and
interesting, and my only regret is not having the time to reply to you
all personally.
I will however summarize the results of this unofficial survey (the
number of concerned people who took the time to write to me is
surprising, so it was almost a survey). Almost all of the information
below has been appropriated from the people who sent me mail. I have
tried to answer as many questions as possible, while keeping the
information topical, and trying not to repeat the FAQ.
On the topic of the Biopsy
--------------------------
Many people suggested I should probably just continue on a GF diet,
since I had already won most of the battle by resigning myself to a
gluten free diet for life. Further more, there is nothing that a
biopsy can provide me with personally. Since I have the symptoms, and
I respond to the treatment, then whatever the result of the biopsy, I
would still have to be on a GF diet.
However, a few people mentioned that in some countries (NZ, and Great
Britain) you can get GF flour on prescription, in addition to certain
tax concessions, for being on a GF diet if you have been officially
diagnosed by a positive biopsy.
Unfortunately for me, Australia does not cater for celiacs that well.
We get the tax concessions, but not the prescription flour. This
doesn't really worry me, since meat fruit and vegetables are
inexpensive, and I don't really like the GF bread.
Another thing Australia doesn't do too well is cover the costs of
diagnostic techniques. My private health insurance doesn't like paying
out money for diagnostic techniques, I expect goldbricking would cost
them too much money otherwise. Public health care has the same policy.
So unless the disease is life threatening, diagnostic procedures must
be paid for entirely out of the patients pocket.
I also received a brief account of a person who was written up as
"officially" diagnosed as a celiac by their doctor after responding
favorably to a GF diet. I expect this was due to more serious symptoms
(diabetes) improving while on a GF diet, so this avenue is not likely
to be open to me.
The greatest concern expressed from the people who have had a biopsy
was that I would have to go on a gluten challenge for several months,
and that it may not be worthwhile at this point (having been GF for
months) getting the diagnosis.
As far as the pain involved in the biopsy, I have been assured it is
minimal. Many people did not even remember the procedure, even though
they were awake for the whole thing.
On the flip side. Someone suggested that my doctor felt threatened by
my superior knowledge of the disease, and responded by demanding I
submit to a biopsy. Quite likely, considering I was on the wrong side
of the desk to be doing the lecturing!
I have decided not to get the biopsy done, primarily due to the
daunting prospect of the gluten challenge, but the cost of the
procedure (being in Australia) also worries me, since I will see no
returns on this investment. I would be sicker and poorer for the
biopsy, and little the wiser.
For those who asked about my symptoms
-------------------------------------
My symptoms are; immediate severe heartburn and bloating, followed by
"fuzzy mindedness" shortly after, then about 12-24 hours later I have
gas pains, constipation, then finally diarrhea. I also suffered from
sleeping difficulties, and a need for more sleep than normal. I used
to have severe joint pain in the knees, and a graininess of the scalp.
I also used to suffer from shortness of breath, and I was beginning to
have a reaction to milk before I went GF. Most of these symptoms have
disappeared entirely, all have improved.
About GF bread being made in the same kitchen as Wheat based bread
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Most people who responded to my question about GF bread being made in
the same oven as regular bread indicated that the greater risk of
contamination would be via utensils, surfaces, and even the air inside
the bakery area. It can take up to 24 hours for flour dust to settle
out of the air. Everybody who wrote about this concern thought the
bread would be dangerous to eat.
Some respondents enquired about which store to purchase gluten free
bread from. The answer to that is Woolworth's, but since I live in
Australia that information is of little use to you.
Thanks to you all for being part of my support network.
Galen Rutledge
_________________________________________________
"The reasonable man adapts himself to the world;
the unreasonable man persists in trying to adapt the world to himself.
Therefore, all progress depends on the unreasonable man."
--- George Bernard Shaw.
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