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CELIAC  April 2001, Week 3

CELIAC April 2001, Week 3

Subject:

Part 2: Simple Gene Test

From:

Kathy <[log in to unmask]>

Date:

Tue, 17 Apr 2001 13:11:34 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (129 lines)

<<Disclaimer: Verify this information before applying it to your situation.>>

Here are more replies I received to my post about Dr. Fine's Gene Test,
which can be ordered via the interent at www.finerhealth.com.
Kathy

This is new.  Dr. Fine has been working with celiac and these new tests
for a little while.  But, if you hear him speak (and if you ever get a
chance you should) he says it takes about 10 years for a new method to
gain acceptance within the medical community.  So, that is why instead
of marketing his products and research to doctors he is going directly
to celiacs through his WEB site.  That is not to say he ignores the
medical community,  He was here last year to meet with a group of GI
docs here.


So, it is new, leading edge and may or may not be something your doctor
has accepted yet.

I have no connection with Dr. Fine's group.  I have heard him speak and
I have had several phone conversations related to CD with him and I find
him extrememly knowledgable.


Francie Kelley
Austin, TX

-------------

The gene test will only tell you if you have the celiac genes. I have
seen estimates of the distribution of celiac genes in the general
population (USA) to be as high as 30-percent. Not all persons with
celiac or gluten sensitive genes actually exhibit symptoms. The gene
test is most useful for persons that:

1. have the symptoms but have tested negative in traditional tests;

2. have symptoms similar to celiac disease and want to rule out celiac
disease as the problem;

3. have been on a gf diet for too long to get positive test results (and
are unwilling or unable to do the gluten challenge for the traditional tests);

4. want to test blood relatives that would be unwilling to participate
in a more invasive test (like blood samples or an endoscopy);

5. are already diagnosed but would like to know what genes they have; or

6. would like to test an infant for predisposition to celiac disease
before grains have been introduced in the diet.

Being able to observe actual damage from the disease (e.g., flattened
villi) is still the best indicator.

-------------------------

Kathy, Yes, this is new and good.  Dr. Kenneth Fine has worked in this
field for more than 10 years defining this test.  He was with one of the
best medical teaching univ. in the US for more than 10 years and is now
at another large univ in Dallas.  I used to work at UT Southwestern
(where he developed the test).  However, I did not know him or of his
work at the time.  I didn't have this problem then.  When I became ill I
began searching for answers.  I found his website on the internet and
asked my doc if i could use it instead of the biopsy.  My doc researched
Dr.  Fine's work because my doc still works at the Univ where Dr. Fine
worked.  His work is highly thought of and very accurate although not as
well validated or known of yet.  It is thought that in the future it
will become the "gold standard" for testing.  I used the stool sample as
well as the gene test.  Two different doctors have reviewed the test and
say there is no reason for a biopsy.  The tests were more conclusive and
accurate with a definite diagnosis.  The stool test can show what's
going on before it gets into the blood --

Hope this helps.

Jill

----------------------------------------

I asked the same question of several celiac experts. Their feeling was
that Dr. Fine's research is intriguing, and may lead to some changes in the
future as more coorborative research is done on his work.  For now, the
"gold standard"of diagnosis is still biopsy. However, reading the
archives and other research will show you that many experts feel that a
large percentage of patients are tested with traditional bloods tests
and biopsy and have false negative results. I saw one doc suggest they
are missing 30% of cases.  It seems that until you are very very ill,
you may get a false negative. The stool test from Dr. Fine picks up
gluten antibodies more easily.  Some experts I consulted say those
antibodies may mean something else, not gluten intolerance. (what else?
I don't know!).  Also, we have more research needed on the gene-
evidently we are not sure yet of all the genetic pieces - there may be
some still unknown, so you may have the gene we know about, but not have
celiac as you do not have that missing one. Confusing, isn't it?  My own
experience: 3 other family members have CD.  I had many intestinal
symptoms, but was not losing weight and was working, so I wasn't so ill,
but knew something was not right, and getting steadily less right over
several years. My blood tests were negative, my biopsy was negative. I
did not have a genetic test done.  I did have Dr. Fine's stool test
done, and it was positive for gluten intolerance. I elected the day
after my biopsy to go GF to see what happened. My symptoms abated after
only a few days, and  now after 4 months I feel great. Intestinal
problems and fatigue are gone- and an unexpected side benefit is that my
migraines are almost gone- I have had two in four months, whereas
usually I would have two a week. I'm saving lots of money on migraine
drugs! Now is that the GF diet or is it that I am cooking from scratch
so not getting many preservatives that might have caused migraines?  Who
knows, but I feel great. So the medical establishment does not think I
have gluten intolerance, as my biopsy was negative.  It is clear to me
that I do, however, and Dr. Fine's stool test goes along with what I
have experienced. I do understand the experts saying that they want to
more coorborative research- they are acadamicians, and of course they
want to check and double check everything.  So I hope to see more papers
published on the subject of testing.  In the meantime my own experience
told me what to do. Good luck to you.

--------------------------------------

...Dr.  Fine's testing would be especially useful for a child w/ a
family history of celiac and symptoms since no anesthesia in involved.
Since the cost is comparable to a blood panel for celiac, it could find
celiac quicker without the dramma of drawing blood.  Your doctor will
not be too agreeable on ordering blood tests if insurance won't pay, and
the insurance won't pay for them on a regular basis since they aren't
any more up on the condition than anyone else....If they realized the
cost savings to be had by diagnosing celiac disease, more celiac would
be diagnosed...Right now the drug companies are making the profits by
treating the symptoms...

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