<<Disclaimer: Verify this information before applying it to your situation.>>
Thanks to all who responded. Here’s the conclusion:
Sero-negative celiac disease exists, and it is common. Be
sure your total IgA serum is tested, if you have IgA
deficiency, your blood tests will come back negative. If
you are on a GF diet already (even for only a week or two)
your bloodwork will likely show negative. (Again: I'd
question bulemia, anorexia, or subconscious avoidance of
gluten as a possible reason for false-negatives).
Congrats to those who are living the GF lifestyle and
don't need a doctor to tell them to do it. If your
symptoms go away on a GF diet... well that is the ultimate
test. Much more foolproof than Prometheus (or any lab) or
the scope.
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My husband has CD yet his blood serology was negative.
Prior to going GF this year, he had chronic diarrhea since
childhood, short stature, elevated liver enzymes, bloated
stomach, body fat located primarily around the middle,
tons of food allergies/ sensitivities, irritability, and
many other symptoms. After a friend's urgings, we had him
tested by Prometheus in January 2005. His blood serology
from Prometheus came back negative ("inconclusive") but he
does have one of the genetic markers for CD. He went ahead
& switched to the GF and became a new person....His
diarrhea is much improved and almost completely gone. His
stomach aches and sensitive skin are much improved. He's
less irritable & has more energy. His stomach is not as
bloated. His allergies are better. Actually, there are too
many other improvements to list them all.
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My son had all negative blood work, he is IgA deficient so
that explains some. His IgG were negative though too. But
because he has a Aunt with coeliac and he had such changes
when withdrawal of gluten, being very well within 1 month
then so unwell on the gluten challenge, the doctor agreed
to do the biopsy. His blood work was negative after a 2
month challenge. He was biopsied and had increased
Intraepithelial lymphocytes and thus potential coeliac....
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was 52 years old when diagnosed by biopsy. Bloodwork was
negative. My family was tested by endoscopy also, as the
GI said if my coeliac did not show in blood, nor would the
rest of the family.
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Yes, I am absolutely sure I have celiac disease, but my
HLA results came back as "normal" and the
gastroenterologist basically brushed off my concerns about
the result and I also felt that I wasn't to be bothering
him. I certainly wouldn't be following a strict gluten
free diet if I didn't know first-hand what a difference it
makes, not to mention that I have peri-osteo and many
other obvious signs of malabsorption. Unfortunately I was
advised by my GP back in 1989 to simply start following a
gluten free diet and was never biopsied, so I was counting
on these new tests to verify what I know in my "gut" to be
true.
-----
My bloodwork came back with one positive marker and one
negative marker. My biopsy was negative for CD so the
doctor diagnosed Gluten Sensitivity. I also have the
stomach problems but not to the extent you are describing.
The good news is the gluten free diet is working and I
feel better. Vitamins help tremendously.
-----
we had that problem with my grandson - one blood test came
back positive but then he was sent to the "GI specialist"
& they could not find anything. Although he has failure to
grow & I knew he had celiac. After much badgering my
daughter in law put him & herself & the other two kids on
the GF diet. My grandson grew 1 3/4 inches within 4 weeks.
My son who I knew had celiac from infancy refuses to
acknowledge it or support the diet for my grandson. He has
been a pain about the whole thing. Although he is very
careful to make sure my food is GF. The GI specialist said
that if my DIL put him on hte gluten free diest & he grew
that would mean that he had celiac...
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I tested negative for Celiac, although my TTG was very
high normal and close to the positive diagnosis. I stay
gluten free because the symptoms appear immediately if I
do ingest. I cannot even attempt to do any kind of
challenge as it took me a year to recover from 3 weeks
into a 6 week challenge. I gave up because I could not
function at all--and I also get the peripheral neuropathy
and terrible "rash" on my back which was also botched when
biopsied. I am one of probably many who have tested
negative for celiac... It seems to me that there is no
standard for celiac testing among the HMO labs and they
don't specialize in this testing. I could be wrong. This
seems to be my problem, as I can't seem to get cooperation
from docs to send me to a specialist, but this is not
something I pursue anymore. I'm content with my self
diagnosis.
-----
My blood test was negative, but the endoscopy said I had
it. I was definitely not a happy camper.
-----
And....more doctors must be aware to order a total serum
IgA level......many celiacs are IgA deficient and
therefore will not test positive on celiac blood testing.
This was true in our family....4 people bloodtested
negative, but based on symptoms were biopsied by Dr. Green
at Columbia and biopsies were positive. It's not so very
rare.
-----
I had positives on blood tests, inconclusive on biopsy,
(my naturopath messed up an didn't tell me I needed to be
on gluten to get results that would be representative, and
I didn't have the so-called genes) Well, my Gastro stated
that 5% of people do not have the gene, and he states that
I have celiac disease. Go figure. On the other hand, my
brother died of intestinal lymphoma, I have been anemic
all of my life, have infertility, am of short stature, and
have all of the symptoms of celiac, including digestive,
as well as neurologically based.
-----
I was diagnosed with celiac disease by biopsy. When they
did the blood tests, I came back negative. Probably for
the same reason. I was having problems holding anything
down. However, when the went in to check for a stomach
ulcer and any other reason for the symptoms I was having
they found that my intestines showed the damage to the
villi that they needed in order to make the diagnoses of
celiac disease. My intestines were damaged so badly that I
have still not made a complete recovery to my villi, which
I have had a biopsy at the five year mark and still showed
some damage, but alot of healing from my original
biopsy...
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My blood tests were negative (borderline anti-gliadin; tTG
wasn't on the market yet) 6 years ago, but I sure had
symptoms. An endoscopy, with the Dr. sending the biopsies
to a pathologist with expertise in malabsorption
disorders, showed Celiac Disease. Within 2 days of going
strictly gluten-free, my symptoms disappeared.
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