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continued from Part 1
My situation is similar.  I realized gluten was making
me sick (migraines, etc.), then found the listserv,
then found Enterolab, which confirmed what I was
experiencing (and also diagnosed my family).
By the time I thoroughly understood the conventional
diagnosis method (blood tests and biopsy), I had been
gluten-free long enough to make the blood tests
invalid if they were negative.  I didn't want to
undergo an unnecessary biopsy, either.  
My solution has been to find doctors who are current
on the literature and research in this field, and have
a respect for my experience and ability to evaluate my
own reactions.  Fortunately, I've found both a GP and
a gastroenterologist who are able to do just that;
perhaps you can, too.

I never had a a biopsy, my son did. They missed the celiac disease on the biopsy. He took Dr. Fine's tests 2 yrs later and he not only has the gene but he is sensitive to yeast. So much for biopsies. I have been a celiac for 29 yrs and I know that I cannot eat gluten or I suffer for it. 
The Entrolab is not accepted in main stream medicine and Dr. Fine is operating out of the mainstream.  Is he correct or not?  You have to decide for yourself.  Your GI is telling what the standards of care are.  Do you need an official diagnosis or will you still stay GF? 


I'm not very knowledgable, but I hadn't heard the endo is outdated.  The problem
may be that if you aren't eating gluten, the endo won't reveal as much damage. 
I think if you are set on not eating gluten again for the rest of your life,
then it doesn't matter either way if you have the biopsy.  I would then refuse
it.  You don't have to get any procedure you don't want.


There is so much controversy on this topic.  I am sure you will get those that swear by the stool test and those that will tell you it is crap.

Here is my take.  Dr. Fine has done some wonderful research and based on that developed the stool test.  It you check our Dr. Fine's sight (www.finerhealth.com) you can read about it.  In addition, Dr. Fine has been very proactive about diagnosing CD.  His aggressive (and I mean this in a good way) testing of people has diagnosed a lot of people who have suffered for a long time with no help from a more traditional approach.  Therefore, you have a lot of people who have a very strong faith in Dr. Fine and his methods.

That said, Dr. Fine's test have not been either used or tested outside of his lab.  So, he has a very small following in the medical community.  These doctors, scientists, and researchers want to see the rigorous testing and duplicating of results that go along with most medical processes.  Therefore, most doctors will still rely on the tested standard of blood work followed by biopsy.  

What is best depends on how you and your doctor feel about the different approaches.  

There have been several posts over time about why to biopsy and why not.  The idea being that "if I stop eating gluten and I feel better than should I just leave it at that".  If you search the archives you should be able to find some of these posts.   If you go to the WEB site for the list [log in to unmask] then just click on search the archives and then select celiac you should be all set.

My doctor said a biopsy can be a lot of trauma for the body, and Enterolab
can "deduce" similar information.

The biopsy is looking for damage, damage causes malabsorption.  So
Enterolab's malabsorption results can help you to "guess" if you have much
damage or not.

How much gluten had you been eating prior to getting tested?  If you were
already low or minimal gluten then I would expect the antibody results to be
low.

I had been on minimal gluten for a month when I was tested, and my
antibodies were around 100... so my doc was pretty quick to say Celiac.  :(

If Microscopic Fecal Fat Score:  (I just went and pulled up my Enterolab
results) is what you are looking at for the 561, and I think you are, then I
would be satisified with these results!

>From what you've said, you are predisposed to Celiac Disease (the gene test)
you have noticable intestinal damage, feel better when gluten free, and most
likely had already been cutting back on the gluten before being tested,
which would have thrown off the antibody numbers.

I hope that helps.  I'm sorry to say that I would take the Celiac diagnosis,
and skip the biopsy since it is just going to look at your intestines and
confirm the damage that 561 already says is there.

The endoscopy is a very simple percedure.  I had my second one this morning.
The first two years ago when I was diagnosed. That one made it easier for me
to stick to the diet and understand the need for the diet when I saw the
picture. Todays, was a follow up and it assures me that I am doing very well
on the diet. It also eliminates the worry of any cancer being present.
You don't feel a thing, nothing to do before having it except not to eat or
drink after midnight. Very easy.
"Celiac" by definition means you have damaged intestines.
You can be very gluten intolerant and still not have
damaged intestines -- and if you are GF for awhile,
you won't have damaged intestines anymore either.

So the biopsy might be useful to see what shape your
upper intestine is in, but it may be healed by now.
My GP said about the same thing, but I read "Dangerous
Grains" and their take is: if you react to gluten, it
will make you sick, but the sickness you get may
be Celiac, or it may be cancer, or it may be MS. Celiac
is only one possibility of, say, 126 different diseases
that might be gluten-related.

Biopsies are NOT outdated and are the best way for a doctor to diagose CD and see how bad the damage to your intestinal vili is.

A biopsy provides a benchmark in case you do not respond to the diet or it 
problems develop in the future.  Unfortunately, you can't predict that won't 
happen.  If it does, however, comparing a second biopsy to the first will 
allow the doctors to determine if the villi has recovered (good job on diet, 
but something else is causing the problem) or if the villi doesn't look any 
better (need to check your diet for hiddenn gluten OR diagnosis is wrong and 
they need to look for a new one.) Without a benchmark, it will take longer & 
be harder to find the problem.  

If damage is severe on the first biopsy, you can expect a longer response 
time and possibly incomplete healing.  Easier to be patient when you know 
more patience will be needed.  For those who had been sick for a long time 
prior to diagnosis, there is always the risk for cancer, easier to evalute 
risk with tissue sample but impossible to determine from blood tests.

If you don't get get it now, there is no way to go back and get it later.

Small bowel biopsy/endoscopy is relatively easy...Fast the previous evening & 
done with an amnesia-type anesthesia on an outpatient basis.  Need to have 
someone drive you since  you will have levels of drugs in your body after 
test.  I've accompanied a friend a couple of times...he always woke up 
wondering when they were going to begin.  Much easier than when I had my 
throat sprayed and had to sit on the edge of the table in from of a 
fluroscope so they would see where to thread the blind scope to get one 
tissue sample 21+ years ago ...Technology is wonderful!

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