<<Disclaimer: Verify this information before applying it to your situation.>>
Thank you to all who replied to my posting. As well as getting answers to
the question,
I wanted her to see what help is available to us on this wonderful site!!!!
Thank you. Kay
I was in the same position as your friend. I changed GPs and my new doctor
is celiac himself, so recognized the symptoms. According to the Celiac
Association of Canada and the Guten Intolerance Group of NA, you have to
have been eating gluten regularly to get a positive result on a blood test.
They recommend 6 slices a day for 6 weeks. My GP wasn't prepared to do that
amount of damage to me, so sent me for genetic testing. This doesn't
confirm one is celiac, but if the gene isn't present, one can't be. I had
one of the genes and together with my great improvement GF, this was taken
as a firm diagnosis.
I would be very surprised if she got a positive biopsy if she is GF for the
same reason as the blood test, so it sounds as if she is celiac if she
improved so much. Only one other thing to consider and this is whether she
is wheat sensitive rather than celiac.
In my case, I hadn't been on wheat for 10 years, but was getting residual
gluten in other foods, like rye bread, stock cubes etc. So I got a false
negative on my blood test, but when I got the remaining gluten out of my
diet, the result was incredible.
I would also look to see if she has any of the conditions that usually come
from celiac. I had osteopenia, thyroid problems, anemia as well as
digestive problems.
I hope things for well for her, Jane
One must be eating gluten liberally for the blood tests to be accurate.
Doing the regular blood antibody tests would be a waste of time and money at
this point. Sorry.
Janet Rinehart, Chairman
Houston Celiac Support Group
www.houstonceliacs.org
The blood test would probably not confirm if she has been GF. However, if
she is feeling better on the diet and whatever symptoms she had have
greatly improved, then she might decide to stay with the diet for her
general well feeling. However, she should probably have some type of
blood work or testing done to make sure there is not other underlying
factors. A GF diet can improve the symptoms of other autoimmune diseases
and she should not take a chance on not treating something else if need be.
On Nov 23, 2007, at 2:25 PM, katherine merrill wrote:
will you summarize? I'd like to know the answer too -- though in my
experience the answer is a resounding NO! If she's been gluten free for
eight months I don't think there's any way she'll get an accurate blood
test.
Thank you!
Do not forget that if the blood tests are negative, they have only a 75%
chance of being right. And of course if the endoscopy is done just a little
bit from the right section it can be incorrect also.
How long has she been gluten free? It took me several years (3) of gluten
free eating for my blood test to register no reaction.
Betty
Once gluten free, you cannot get an accurate diagnosis. She must resume
eating gluten to get a good result. If she feels better GF, just stay that
way. RC
================================
There is NO blood test that determines whether or not a person has celiac
disease. The only way to tell for sure is for an endoscopic examination with
a biopsy. Just the visual examination alone is not enough.
People with high antibody levels are suspected to have CD. In my case, my
levels were elevated - but not highly so, and the results were equivocal - ,
I was sick, and the biopsy proved CD.
After 8 months of being GF, it is likely that even if your had CD it would
be virtually undetectable even with a biopsy.
Hope this helps,
Vic-Sunnyvale, CA
I seriously doubt she'll get positive blood results. I had only been GF
for a about 5 months & my blood work came out negative. My very gluten
sensitive eldest son had only been GF for a few weeks & his blood work came
back negative. My gluten sensitive youngest son had never gone GF & his
blood tests also came back negative. Both my eldest & youngest sons and
have learned through bitter & painful experience that we MUST remain
vigilant about the the GF diet to remain healthy.
So there you have it! Tell you friend to listen to her body & forget about
pleasing her stupid doctor!
Valerie
I was in the same situation and very unwilling to go back on a gluten diet
for even a day. So I opted for genetic testing instead. If your friend
decides on this route make sure it is at a lab that tests for the other HLA
DQ genes besides the two for CD. Fortunately I did (Entrolab), since I had
two of the other HLA DQ's which are positive for gluten sensitivity. Hope
this helps. It's
nice to vertify that gluten is really the problem.
After 8 mos. GF, it is very unlikely blood work would confirm someone as
celiac. If the diet is carefully followed, antibodies would have
decreased/disappeared after 8 mos. and the blood tests would be useless as
would a repeat biopsy. If there is any doubt about the person who read the
original biopsy slides (if obtained while person was eating gluten) , they
could be requested and forwarded to one of the celiac labs for confirmation.
I am not sure of the fee for this but it might be helpful.
Carol
At this point, her blood work would be negative because she has been eating
GF. Her biopsy would, most likely, by negative, too. She would need to
take the 'gluten challenge' (eating gluten everyday for at least two months)
and then be re-tested.
Pat Minnigh
www.celiacsonline.com
Hi,
Blood tests won't be accurate, as she has been GF for too long. Her
intestines have healed.
Regards,
Mireille, co-host of: http://forums.delphiforums.com/celiac/start
Hi,
My understanding is that if someone is on a GF diet, a bloodtest will not be
accurate to check for celiac.You have to be eating gluten. If your friend
is feeling better, then I would stick with the GF diet.
Since she has been gluten free for 8 months there might not be any
antibodies in her blood. She will not know if antibodies do not exist
because she is now gluten free with celiac or never had celiac therefore
there were never any antibodies in her system.
On Nov 23, 2007, at 2:25 PM, katherine merrill wrote:
The blood tests in the best of circumstances are not very accurate and
especially since she has been gluten free. I wouldn't even bother having
one.
The stool tests by mail through Enterolab would be much more accurate.
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