alexis yildir

I am finally getting around to finding out if I truly have CD and my doctor
has given me an order to do a blood test basically at my discretion and
convenience. How long should I consume gluten and in what quantities? I am
not really looking forward to this as I have coonvinced myself over the
years that gluten is a 'bad thing' but I have never had really severe
reactions - at most light diarrhea and what must be a comparatively light
case of DH.

I am doing this because being completely GF is very inconvenient for my
extended family. I suspect that if I were to discover that I do not have CD
that I will still limit/avoid gluten just because it is usually the earmark
of over-processed and under-nourishing quasi-ersatz food...

Thanks for advice, particularly from those who have been through this.

Alexis in Winnipeg

don wiss

You have to consume enough to be as sick as you were before you went gluten-free.


That gives you an alternative. Eat enough gluten to get a DH breakout and
have a dermatologist biopsy it.

Or read Dangerous Grains and read about all the other disorders connected to gluten.


Not me then. No way would I eat gluten again just to get a diagnosis.

Don <donwiss at panix.com>.

pb

Like Don, there's no way I would eat gluten to get a diagnosis. If you
do get tests and it/they are positive, there isn't any such thing as
limiting gluten. It's 100% gluten free for the rest of your life.
P

jon francis

Alexis ,

When I asked our support group leader how long I should be on gluten before
I got tested, what she told me was surprising. She said the latest studies
are showing that you must be consuming the equivalent of two slices of bread
every day for three months in order for the test to be accurate. That was
NOT what I wanted to hear, but on the other hand it would be really bad to
get a false negative test result.

Jody Francis

annemarie

Like the others said you need to be eating gluten, plenty of gluten to have
a blood test.
Then if you get a positive result you need to be 100% gluten free for life.
I am sure it would be much more inconvenient for the extended family to have
you die, so your home should be gluten free too to avoid contamination.
More on that if you get a positive result.
Living a gluten free life in the beginning is a hassle, then you get used to
it and only feel irritated when others do not respect your needs, esp
restaurants. So eat up, and have it soon, or give up completely.

jhem

For Alexis AND you Jody, skip the blood test at this stage and get the gene
test. Doesn't require you to make yourself sick eating gluten before it's
performed and is quick and easy.

If the test is positive, then you _might_ want to consider getting the blood
test performed. If it's negative, then there's no reason to have it done or
stop eating gluten.

--
Regards,

James

emma thackery

When I had my blood tests done, the doctor said I did not need to be
eating gluten at all. So I assume it varies with the type of test, no?
I wasn't eating any gluten (at least none that I knew about) and I
tested positive.

annemarie

You were just lucky then and there was still an immune response. Your
doctor gave you the wrong advice though. Many doctors are rather uninformed
about this condition unfortunately. I heard a statistic once that the
average diagnosis time from onset of symptoms in the US was 11 years!!!!!!
People get diagnosed usually as having IBS. People die for lack of
diagnosis. IMHO everybody presenting IBS symptoms should automatically have
a celiac blood test.

emma thackery

Happy holidays! There are several different blood tests for celiac said
my doctor. Because of information I found online, I asked her about
this specifically *before* they did the blood tests. She said this
particular test is new and does not require that one eat gluten for the
test to be accurate whereas the other tests do. The test that I had was
a Tissue Transgluaminase Antibody, IGA. A weak positive is in the range
of 20-30. My test was 51. I'd really like to know if she is wrong
about the gluten-eating part. Are you specifically familiar with this
test?

..

annemarie

My understanding (not an expert of course) is that for a blood test to pick
up an antibody (your test) there has to be something that triggers the
antibody response.
There is a genetic test that I know little about, this tests if you have
inherited the gene that can lead to celiac disease. For a blood test that
is looking for antibodies (the bodies response to infection/disease etc, in
this case the body reacts to gluten) there has to be a trigger. However if
you were severly affected by gluten the residual effect can last for months.
For some people however being gluten free for only a week or so can mean
that they have a false negative.