<<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.