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

Thanks to all who replied.  Maybe I'll get better at this as time goes
on. When I wrote my request, in my mind I was thinking ALL negative
blood tests, but I didn't say that, so I got a mixture of replies but
mostly I got the information I wanted.  I will print the summary for my
GI doc.  We are all still learning.


1.  This is true of all the four diagnosed celiacs in our family.
I am celiac, 2 of my 3 adult daughters and 1 granddaughter.

All blood tests--the four antibody determinations and the tTg.  We all
have low levels of circulating IgA (this is a separate blood test and
was suggested when there were persistant symptoms and negative blood
tests for celiac) and were told this invalidates the tests except for
the IgG.  The doctors don't have an explanation of why this test was not
positive.  My granddaughter's brother also has low circulating IgA
levels but his biopsy was negative and he has no symptoms of celiac.

Biopsies were done by Dr. Fasano in Md. on the children and Dr. Green of
NYC on the adults, so I believe the biopsy results were valid.

All improved on a strict GF diet, especially the child who grew,
developed a healthy appetite and is no longer anemic.

2.  My son had the basic blood test done for celiac disease. IgG, IgA
and about 4 others I can't remember, they were all negative. The doctor
told us that you can have a false negative result, he did a biopsy and
found Celiac Disease, no doubt. My son has been gluten free for almost a
year and has grow 3 inches and gained 7 lbs. I am a believer.

3.  I am a biopsy confirmed celiac with no positive blood results.  Igg
and Iga were both negative.  My GI actually expected that they would be,
since the lab he uses (military) is not experience enough to be do the
test with a high enough accuracy.

4.  I have been diagnosed via biopsy and have negative blood test
results.

Unfortunately, I just move and have no idea where the list of blood
tests is that were taken.  (Literally, they are buried "somewhere" in
storage...  I'm sorry!)  I do know that the normal tests were taken
(iron levels, etc.) plus NUMEROUS others (at least 10 vials of blood
beyond the normal 1 or 2).  I know he tested IGA, IGG, etc. levels as my
sister is IGA deficient and I was paying attention to those.

5.  Are you in the Puget Sound region?

If so, have your doctor call Dr. Michael Mottet at Bremerton Naval
Hospital.

360-473-4206.   He diagnosed my case. He is familiar with the fact that
testing is not perfect.   If Captain Mottet is not available, the
pathologist is here on Oahu and I can have him speak to your doctor.

6.  The serum tests are not at all accurate. And because the
establishment considers the GF diet so harsh, the tests err towards
giving false negatives. Because of this, the possibility is very real.

7.  I am a diagnosed celiac of 6 years with partial blunting of the
villi.   I have had blood tests run a couple of times and all negative,
once through my gastro after being diagnosed.  Also participated in a
blood study through Univ. of Utah.

8.  I am biopsy diagnosed with negative blood tests. I do not have the
results at the office, and it was some time ago that I had the tests
done, so I don't remember the specific ones. I do recall that it was the
typical panel for CD, however, if that helps.

9.  I know that people with IGA deficiency will not test positive on
blood tests for CD

10.   I had the IgG, IgA, and IgA endomysial
done (twice) come back negative (twice) and then a
positive biopsy.  If your doctor doubts, I could give
you the phone number of the gastro who biopsied me.

11.  I had a negative blood test for Celiac but a confirmed endoscopy
that I was Celiac.  Sorry, I do not have my blood test results.  Dr.
Peter Green, a specialist on Celiac, took both the blood test and the
endoscopy.  You can have negative blood tests and positive endoscopy.

12.  i always say, the small intestine is so large and they can only get
to a certain part... i had 3 biopsies and it was the third that finally
nailed it! i had insisted from the begining that i was celiac just based
on how well i did off of gluten, but my nasty doctor made me stay on
gluten for 3 extra years while he got HIS diagnosis. i initially had
chronic inflammation of the small bowel and no damage, but by my 3rd
year.... makes me sick. to top it all off, my insurance changed, i have
a new doctor who now thinks i do not have celiac!! he insists on doing
an endoscope and going back on gluten, i have been off of gluten for 3
years and am also on a whole foods diet since virtually any processed
food makes me ill! anything from the "safe" list makes me sick,
especially any kraft foods item or snickers. so i am off all junk and
only on fresh produce and meats. so is my 4 yr old celiac who never had
a biopsy. she showed enough major symptoms and improvement on the gf
diet for her doctor to diagnose her with out doing invasive things. she
will get the gene test done in a couple of years when we have the cash.
for now she is super healthy, only 2 colds in her life and not eating
the junk all the others kids eat out there! :) about my new
internalist... i told him to take a hike. doctors do not always know
what is best, they do only for their body. i am trying to find another
one. i have all my records and the last endo states celiac blunting...
so why i need to prove it to another doctor, i do not know! i am also a
large woman, so maybe it is the fat prejudice again. it does happen.
good luck. btw,  my blood work was always borderline when i had it done.
i figure, you either have it or you do not.. why make the antibodies for
it if you do not have it? hello!

13.  Yes, I am a person who is a biopsy-diagnosed celiac, but my blood
tests have always been negative.  I had blood tests done first when I
first got really sick with the symptoms that ultimately turned out to be
celiac; and then after I had been on a self-imposed mostly gluten-free
diet for almost a year; and finally again after a 3-month gluten
challenge I went on when I wanted to find out for sure.  They were
always negative.  Still, based on the history that I had carefully
recorded in a food and symptom diary, my doctor (a celiac specialist)
decided to do an endoscopy/biopsy anyway.  He concluded that I was
indeed a celiac--which I was pretty sure of anyway due to my symptoms,
but getting an official diagnosis really psychologically helped me to
become totally strict about my diet.

14.  I had 2 neg blood tests and 1 pos. I believe it was
the igg. Whatever is less specific.

My biopsy was read as neg by my dr.
but when I sent it to university of Maryland they said
it was pos.

I'm sure you will find that there is about a 30%
chance of getting a false neg.

--Thanks again for all this wonderful info.  It certainly is very
interesting and can, hopefully be a good piece to hand to our docs.

Barb

email address:   "Barb Gardner" <[log in to unmask]>