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

Hello group

I received 51 responses from this group in answer to my post   Endoscopy
Necessary? Thank you to all who responded. 21 of the people who
responded stated that they felt that a endoscopy is necessary regardless
of the results of the blood screening. Some of the reasons given I found
especially interesting as alot of them had very little to do with
finding out what is wrong with you and alot to do with whether or not
you would stick to your diet if you didn't have a definite diagnosis and
getting your doctor to believe and listen to you. There are medical
reasons for the testing also pointed out such as, checking to see how
much damage is done and monitoring the damage to make sure that it is
healing.

31 of the people who responded felt that a endoscopy wouldn't be
necessary if the blood screening came back positive but a few of them
stated that a endoscopy wouldn't hurt and would help to confirm the
results of the blood screening.

I hope that nobody minds, but I felt it is important for me to post some
of the responses that I got concerning this issue. Many have asked for
me to summarize so I have included a few of the responses and opinions
that I feel may be of interest to the group. Most of these are personal
opinions and experiences but after all...that is part of what we are
here for...to hear the personal experiences and thoughts of others who
have been through it.

Thank you all so much
Irene Young
South River.Ont.Can

"I still believe i have celiac, but since i have no proof, i need to
re-think it every time a new problem/symptom appeares (people with
celiac have usually other problems too)"

"I just returned from the 9th International Conference on Celiac Disease
held in Baltimore. The opinion of the many experts who spoke there was
quite clear that a biopsy is necessary. To be sure, the NEW blood tests
- EMA (endomysial antibody) and tTG (tissue transglutaminase
autoantibody) - might possibly be even more sensitive than the biopsy.
The speakers, however, felt that a biopsy is necessary (1) to prove the
diagnosis and (2) to see the extent of intestinal damage before the
gluten-free diet. Sometimes, the response to the diet is not clear and
the biopsy (1)reassures the physician that he hasn't made the wrong
diagnosis and (2) provides a baseline for comparison if future biopsies
are needed."

"For you to make the decision to go gluten-free for the rest of your
life?   Only you need to be convinced.  But without  a positive biopsy
you will never  get the attention/respect you need/deserve from your
doctors.  You are free to make subjective decisons (feeling better or
worse is subjective), but  everybody else will demand objective
criteria.  Get the endoscopy."

"Yes, please have the endoscopy.  To go on the diet for your whole life
it is  so important for you to know for sure.  Also, it is important
that you be  counted officially as having Celiac disease."

"The gold standard for diagnosis is still biopsy, but I would recommend
you get the test first.  The advantage of having a biopsy is that their
is no  doubt that you have the disease, and it is documented.  This is
very helpful,  as Dr's tend to blow you off if you don't have a
diagnosis down on paper that  has been proven."

"My background on CD testing has told me that a biopsy will often not
provide  a positive result in a person who is a Celiac, i.e., a false
negative result  is reported. This is because the site where the sample
was taken has not yet  been damaged. In my case, I believe that my gut
was so damaged that I did not have this problem. I now have been advised
that the only real positve test for CD is the blood testing routine, and
where it is done correctly there is no chance for a  false negative. You
do not even have to do a gluten challenge."

"It's my understanding that the blood test give you a 90% conclusion
either way the endoscopy makes it 100%. The procedure is no big deal."

"Personally, with your symptoms, I'd forgo the endoscopy.  It is a
money-making procedure for the doctor and whether it shows damage or
flattening of the microvilli, still will not change you need to
eliminate gluten from your diet anyway.  As for blood tests, Dr. Michael
FIne in Dallas, Texas has kits you can order such as the stool test,
saliva or cheek cell test for the celiac gene, etc. "

"If you have the blood test and it is high on IgA antigliadin
antibodies, the endoscopy should not be necessary. If it is high on IgG
antigliadin antibodies and low on IgA, an endoscopy is necessary. Celiac
disease often destroys the cells that manufacture IgA antibodies, and as
a consequence, a low IgA count  is inconclusive. I would go for the
least invasive test first (the blood test) and cancel the endoscopy if
the IgA level can provide an accurate diagnosis."

"If you know that you feel better by staying offf of gluten then you
could  forgo the endoscopy.  However i have found out that I get better
responses  from all of my doctors when I can say that I am a
biopsy-confirmed celiac. I  have had to demand bone density scans,
Thyroid tests, and vitamin b-12 shots.  I think if I did not have the
biopsy confirmation I wouldn't have had enough credibility with the docs
( even with it I still have a hard time getting them to listen)  The
biopsy is really not hard to go through. "

"It would depend on whether you need validation for anything other than
personal reasons. Everyone wishes some form of personal validation so
they can say "See, it wasn't all in my head. Something is really wrong
with me."The fact that they miss so many (I was one) by messing up the
tests presents
the possibility that you could come up negative, and then be treated as
a head case from there on. Tehn again, if they do it properly, and you
come up positive, they cannot ignore it any further."