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

Thanks to everybody (both Aussies and others) who responded to my
question about my mother being tested further for CD.  I sent her the info and
a contact for the Vic Coeliac Society. She will have a biopsy in a few weeks
time to rule it in or out once and for all.

A summary of the Australian posts is below.

regards

Stephanie (UK)
_____

> I live in Canberra and I had a small bowel biopsy which showed that I had
> CD.  I was covered through private health insurance but I assume Medicare
> would cover it as well.
______

> I recently had some Celiac tests done under Medicare which cost nothing
> as I went to a place called Immediate Health Care in Canberra.  These
> people bulk bill.  I went there because my own doc. refused to test my
> sons for Celiac unless I had a biopsy.  I didn't want to have a biopsy.
> I wanted to go gluten free straight away.  The doc wanted me to wait
> for another month and keep on eating gluten, meanwhile I was getting
> worse.
>
> The first test I had done which alerted my doc to the fact that I might
> have celiac was the gliadin antibody tests - the IgG and the IgA.  Both
> of those showed up in the celiac range.  Then I went gluten free.  At
> the time of being gluten free for a month I had an endomysial and a
> transglutaminase.  The endomysial was negative and the transglutaminase
> showed something, but not enough to say "celiac."
>
> I also had a BIOCHEMISTRY blood test before going GF.  That showed that
> I have iron deficiency anaemia (another sign of celiac).  I think you
> can have a biopsy done under Medicare but the waiting list is a couple
> of months.  To pay for a biopsy costs at least $500.  (I'm not
> concerned about the money, I just didn't want to be poked around
> inside.)
_______

> The tests that I had were,
> Endoscopy and biopsy,
> Anti-endomysal antibodies,
> Anti-gliadin antibodies
> in addition to these my daughter had (and was positive for) enzyme assays on
> the biopsy, for lactase and something else. In Melbourne these are all
> available via St Vincents hospital who have a Coeliac unit.
______

> I'm from Perth and I've had blood tests and and an edoscopy, both of which
> were covered by medicare and both of which came back negative. However, as
> my gastro pointed out to me, you can have negative tests and still be a
> celiac (eg, if they take a biopsy from an area that isn't badly affected),
> and your mum could just be gluten intolerant or wheat allergic. With
> myself, I am highly allergic to wheat and lactose, and I am gluten
> intolerant, which means that if I accidentally (or purposefully, as has
> happened) ingest gluten, I don't necessarily have a bad 'attack', but if I
> continuously eat it my health really deteriorates.
_____

> The standard test here in Aust for CD is a biopsy, but you would be unlikely
> to have a Dr perform it unless blood tests (for antigliadin levels) indicate
> a probability of CD.
>
> The only thing open to your mother, I would suggest, is to get a referral to
> a gastroenterologist.  (Bloods are usually done by a GP).
>
> If there is a family history of CD a gastro may be willing to do a biopsy;
> but the blood tests are usually pretty sensitive in picking up CD.  There is
> quite a strong link between diabetes and CD, which should be borne in mind.
>
> It's worth your mother seeing a gastro, because although she may not have
> CD, there would be a number of other things that could be tested for.  The
> blood tests incidentally, are pretty sensitive, so she should have been
> eating gluten at the time they were done, otherwise they'll show a false
> negative.
>
_____

> Unfortunately the blood test to check for CD is not very reliable. You mum
> should have had an Endoscopy. This is really the only reliable test. An
> endoscopy is done under sedation. A tube with a little camera at the tip is
> placed down the throat and a biopsy is taken of the small intestine or
> maybe the duodenum (i'm not too sure). Gastroenterologists do this test. So
> you mum should ask her GP for a referral to a Gastroenterolog
_____

>  was originally misdiagnosed in 1989 as only being
> lactose and sucrose intolerant but not coeliac.  This was
> because the gastroenterologist only took one sample
> when he did the small bowel biopsy.
>
> Another specialist took a blood sample several years
> later and assured me that it wasn't necessary any more
> to do a biopsy and that CD could be diagnosed by blood.
>
> It came back negative.  I tried another gastroenterologist
> about five years ago and he speculated that I was really
> coeliac but had been misdiagnosed the first time because
> of only one sample being taken.  He said it was necessary
> to take at least seven samples throughout various parts of
> the small bowel.  This time it was proven - four samples
> were positive for CD, three were negative.  He also said
> that the original diagnosis of lactose/sucrose intolerance
> (because of not making the enzymes lactase and sucrase
> that break down lactose and sucrose) usually is an indicator
> of CD.  This is because those enzymes are manufactured
> in the brush border area of the bowel, which is where the
> villi damage is too,  (i.e, the damaged villi impairs the
> production of those enzymes).
>
> I've just added that bit above because I wanted to warn you
> about the misconceptions that some doctors can have about
> bowel disorders.   I was so relieved to find out that I really had
> a tangible diagnosis, not to be treated like a hypochondriac
> any more.  The worry is, though, that if it is left misdiagnosed
> too long, it is very risky for several very serious illnesses as I'm
> sure you're aware.   You didn't mention where your mother is
> living.  I am from Sydney.  My doctor was Prof. Terry Bolin who
> is at the Prince of Wales Hospital Medical Centre, Randwick.
> If she is living elsewhere, perhaps one of the other listees can
> give you a good recommendation, or the nearest Coeliac Society.
>
> By the way, I was overweight and never had diarrhoea.  My main
> symptoms were chronic fatigue, constipation and joint pain.
> A lot of doctors are taught that you must be skinny and have
> foul smelling stools before they should suspect CD.
_____

> i live in melbourne and my daughter was recently diagnosed with celiacs, the
> preliminary diagnosis was obtained by a blood test that checks the anti
> glaidyn levels in the blood. this was then confirmed with a small bowel
> biopsy. it is important that your mother doesn't change her diet to gluten
> free before she has the biopsy, as any damage that the gluten is causing
> will repair quite quickly once she starts the diet. as far as finding a
> medicare way of doing this i'm afraid she will just have to get herself
> refereed to the gastroentorology unit of her local public hospital. this
> would probably be the best thing as if it is not celiacs they will probably
> be able to run any additional testing that may be needed to track down
> exactly what the problem is.
____

> I have been on a GF diet for CD for about 14yrs, 50++ yrs of age, being
> originally diagnosed after much testing including gastroscopy. I recently
> became concerned about my condition and was referred to a Prof Talley at
> our local Hospital(Nepean in NSW). He undertook a further Gastroscopy which
> cost me after paying to see him, anaesthetic etc and after medicare rebates
> about $400. The Blood test is not conclusive.......as you will be aware.
____

> The tests in Australia are Anti-Gliadin Antibodies which tests for the
> antibodies to the gliadin protein in wheat, rye barly and oats.  The test
> that has become available only in the last 12 months to 2 years and is said
> to be the standard by the Coeliac Society is the Anti-Endomysial blood
> test.  I was diagnosed with Anti-Gliadin but now I insist on my family
> members asking for the more recent one.