Australians And New Zealanders Hellooooooo :)

[Mysh]

Georgie thanks for the link - I will join up but I think I need a yahoo ID first by the look of it?

I'm about to head off to work so I'll check it on it tonight. I've woken up with the worst flu like symptoms today - no sign of it yesterday and unfortunately this is the busiest day on my calendar. I'm a sales rep and this promotion comes up every 6 weeks...........I'm dreading it!!

[georgie]

Georgie thanks for the link - I will join up but I think I need a yahoo ID first by the look of it?

Yes - hope you have time to think of one by now Hope you had a good day. Flu in summer sounds terrible !

[amber]

I react to trace amounts of gluten. If the label has wheat listed I don't touch it as I have reactions before. Natural flavours can have gluten - especially if they are brought into Australia already processed. I have been caught by some processed foods that way - even if labelled gluten-free . It is the fine print you need to read. Unless I make it myself from basic ingredients I can't trust it.

Have you read the celiac.com list ?

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

That list is interesting but not totally relevant to Australia as we have different labelling and food producing laws to the U.S.A. What I am saying is that if a product is labelled as gluten free than it has been tested gluten free. Even if there are trace amounts of gluten when tested they are not allowed to label it gluten free. This happened with Vegie Chips. They were gluten free by ingredient but when they were tested by the relevant authorities they found trace amounts of gluten. Therefore they were not allowed to label them gluten free and had to label them low gluten. The problem was fixed and they are now premitted to label the vegie chips gluten free again. Imported products must abide by Australian labelling laws though there are some imported products that I would be less likely to trust as the Australian food testing authorities have not tested the product. Of course there may be times when a product has been tested gluten free but later on a trace amount of gluten gets into the product.

As you are extremely sensitive than of course you would be extra wary of what you are purchasing. It is probably better to stick with products that have the fewest amount of ingredients as possible or make it from scratch as you said. Many coeliacs still purchase products that are gluten free by ingredient but say 'may contain traces of wheat' but obviously for those who are very sensitive it far better not to.

[georgie]

What I am saying is that if a product is labelled as gluten free than it has been tested gluten free.

That's strange - as I know I have reacted to some brands that are labelled as gluten-free. Is there any way for us to know if they have been tested or not ? Like the Heart Tick of approval for low fat foods ??

Imported products must abide by Australian labelling laws though there are some imported products that I would be less likely to trust as the Australian food testing authorities have not tested the product.

I will check again to see if they were made in Australia or imported. I suspect I am just extra sensitive and need to be very careful of some brands.

[teemaree]

I am wondering if any other aussies have the same problem as me?......

And that is getting your blood tests results?...............

My doctor did do a very comprehensive blood test on me, checking everything....

He told me they found that my thyroid is not functioning , that my blood was high in copper, but the levels of zinc were very very low...that I am swamped in estrogen , I asked about my B levels... he said they are very very low extreamly low...he said that the tests show I cannot tolerate gluten or grains... that my auto immune system is fighting my body....

He said he can't place me on a multivitamin regeim as yet, because my body won't tolerate it, he said we have to go slow and steady, and introduce each vitamin bit by bit over time... for two months he just wants me taking zinc, plus my normal gluten free, dairy free soy free diet, and then he will check the levels again to introduce further vitamins

What I am wondering is......................... What the blood tests levels on different things are?...

All I have to go by is what he told me... no numbers to check anything...

I rang their office afterwards and asked if I could have a copy of my blood test, because I was asked what numbers am I showing?.... and I have no idea?......

So could I please have a copy of the blood test.... I was told that the doctor has to give permission... and if I am allowed , they will email it to me... Well they didn't emailed it....So I am guessing he wouldn't let me have them?

I am wondering if it is common pratice here for patients not to get copies of their blood works... and how do I find out just how low these results are?...........

I'm kind of feeling frustrated here.....

Everyone else seems to get their results and know the numbers ... I have no idea what so ever...

I don't know how deep in a danger zone I am.... or even if I am really in a danger zone?.........

[mushroom]

I am wondering if it is common pratice here for patients not to get copies of their blood works... and how do I find out just how low these results are?...........

I'm kind of feeling frustrated here.....

We tend to follow Aussie practices fairly closely here. I have absolutely no problems getting anything I want, including letters from specialists sent to my PCP. Call your govt. health department, whatever it is called there, and find out what their policy is, and try to get it changed if it is negative A patient has a right to know these things--it is our lives, and they are not God. AND we pay for them with our taxes and/or income.

[AussieJade]

Hi All

Havent been on this site for a while - but thought id pop back in so our North American friends could help me out on a trip im going on

Ive been a coeliac for over 10 years - as has my mum and bro - so makes life easier at home

And im from Victoria

xx

[teemaree]

We tend to follow Aussie practices fairly closely here. I have absolutely no problems getting anything I want, including letters from specialists sent to my PCP. Call your govt. health department, whatever it is called there, and find out what their policy is, and try to get it changed if it is negative A patient has a right to know these things--it is our lives, and they are not God. AND we pay for them with our taxes and/or income.

Thanks Mushroom..............Well apparently the doctor mustn't want me to have the blood tests...

because they still haven't emailed them too me...

Under the privacy rights, I am allowed to have a copy of the report, A solicitor friend of mine, who actually defends doctors, told me that am in my rights, I may have to pay for a photo copy of the report, but I am well withing my rights to have it....

So that's how the law stands on it....

I can understand that doctors may not want a patient to misinterept things in it.... But all I really want is some real indication to the levels of certains things... to see how low they are?... and look into being able improve my vitamin levels with things I eat.

Did anyone else have this kind of trouble getting hold of their blood tests results?

It's clear that Mushroom didn't have any problems in obtaining records...

Maybe I need to email them and ask again.... So they have to reply to the email?

[georgie]

Did anyone else have this kind of trouble getting hold of their blood tests results?

I have a great Dr and she prints everything immediately while I am still there at her desk. Its not hard - its on the screen and she presses "print". No photocopying costs or anything ..... You have a legal right to all your records - so just ring them up and insist on it. You may have to pay for copying costs now - but remember in future to not leave the consult without them

[mushroom]

I have a great Dr and she prints everything immediately while I am still there at her desk.

That's what mine does too!. It's great.

[nutralady2001]

Hi All

Havent been on this site for a while - but thought id pop back in so our North American friends could help me out on a trip im going on

Ive been a coeliac for over 10 years - as has my mum and bro - so makes life easier at home

And im from Victoria

xx

Hi Jade.................... hope you have a great time!!

[nutralady2001]

Thanks Mushroom..............Well apparently the doctor mustn't want me to have the blood tests...

because they still haven't emailed them too me...

Under the privacy rights, I am allowed to have a copy of the report, A solicitor friend of mine, who actually defends doctors, told me that am in my rights, I may have to pay for a photo copy of the report, but I am well withing my rights to have it....

So that's how the law stands on it....

I can understand that doctors may not want a patient to misinterept things in it.... But all I really want is some real indication to the levels of certains things... to see how low they are?... and look into being able improve my vitamin levels with things I eat.

Did anyone else have this kind of trouble getting hold of their blood tests results?

It's clear that Mushroom didn't have any problems in obtaining records...

Maybe I need to email them and ask again.... So they have to reply to the email?

I have absolutely no problems getting copies of all my tests, one click of the mouse and it's done !

[UnhappyCoeliac]

anyone had suspect gluten-free pizza at la porchetta? I am very suspicious after last night

[amber]

anyone had suspect gluten-free pizza at la porchetta? I am very suspicious after last night

I didn't realise that La Porchetta did gluten free pizza. Which La Porchetta was it? I have heard that some let you can in your own base and they will make it for you using their toppings. What topping did you have? Did you use your own base? Cross contamination can happen unless they put it on it's own tray in the pizza oven.

Have you joined the Victorian Coeliac Society? I would suggest that you do as they will help you with information and advice. Also they have a great start workshop that you can go to which gives you lots of info re. labelling, going out to eat etc. They provide lists of restaurants that are gluten friendly and take away choices.

[Quasior]

Hi,

I'm an Australian, homeschooling, coeliac, and waiting to find out about my children to see if they are too....

I live in Tassie. I have been recently diagnosed, I was wrongly diagnosed about 10 years ago as IBS.

Now I have been living gluten-free for the last 6 weeks. I was accidently glutened on the weekend and only just

recovered from that. Other than that I'm really improving, lots of good news, still brain fogged and

tired, but hey no IBS now (excepting my glutening). That cleared up so quick!

My only regret is the last decade of suffering the symptoms which led to getting other stuff like asthma

thyroids etc. I've heard people go through a greiving process, disbelief/anger/denial - I got to bypass

all that in favour of relief and vindication.

But, yes, I'm just super looking forward to as full a recovery as possible. I am nervous for my children, though...

Farily sure that some of them have it,

Cheers, Quasior

[nutralady2001]

Welcome ! I was misdiagnosed for over 47 years, probably close to 50, firstly with "mucous colitis" then "IBS" can't get those years back but wish I could go to all the doctors I've seen and wave the test results under their noses

[mushroom]

Welcome ! I was misdiagnosed for over 47 years, probably close to 50, firstly with "mucous colitis" then "IBS" can't get those years back but wish I could go to all the doctors I've seen and wave the test results under their noses

Ya know what? I don't think they would care! Really!!

[nutralady2001]

Ya know what? I don't think they would care! Really!!

Probably not year after year of presenting with symptoms and not one of them suggested any diagnostic testing .Even my diagnosis was "accidental" as I had the scopes because I was severely anaemic and a bowel screening showed blood in both upper and lower GI tracts

[mushroom]

That's really bad, when they have to stumble upon it. You know the old saying about not knowing it if you fell over it; well, this is a little better--not knowing it *until* you fall over it Ya gotta laugh, otherwise it would be so sad

[brazen20au]

i'm waiting on my results (friday i will know). i know it seems funny but i'm desperately hoping that it is celiac disease because i know a change of diet will clear up all these weird and horrible symptoms i have! i have gone gluten-free since my biopsy anyway i was diagnosed with IBS 8 years ago by just walking into a dr's office with pains in my tummy and being told 'you've got ibs' no investigation of any kind.

[mushroom]

i was diagnosed with IBS 8 years ago by just walking into a dr's office with pains in my tummy and being told 'you've got ibs' no investigation of any kind.

That's the way it goes; it certainly doesn't take a medical degree after five years of medical school to say, "You've got IBS" (boom!!! icon here).

If I had $5 for every time I have been told I had IBS I would own my own Pacific Island (not in the Fiji archipelago thank you) and be staying out of the sun (skin cancer you know, I've had a million of them,) under some shady palm tree, sniffing frangipani, drinking drinks (gluten free) from glasses with little umbrellas in them, and generally living the good life (while dealing with all the side effects of celiac because everyone told me I had--wait for it--IBS!! (boom icon again).

[brazen20au]

ridiculous! mind you i do think i have IBS lol (or is it possible for celiac disease symptoms to be flared by stress?) but if i can find another cause to get rid of some / most of my problems i will be very happy!

[mushroom]

My humble opinion is that, yes, we do suffer from what could be described as irritable bowel syndrome, but WHAT is causing the bowel to be so damnably irritable? Once they tell me their opinion on that I might listen. Otherwise, it is just a description of my symptoms, like your skin is red and irritated and he says, "you have a rash." Hello??? "Doctor, it hurts when I do this." Doctor says: "Stop doing that". Is this what we should expect?? Noooo!!! I hold them to a much higher standard. If they don't know they should investigate. (And it would help if their investigation was based on a little more awareness ) In my working days, if I had ever given this kind of response to a client, I would probably have been fired, or at the least reprimanded!

[sophos]

Hi everyone New to these boards, not new to online support though! I am a 33 y.o. woman andlate last year I tried going gluten-free to see if that would help a bunch of symptoms I was having, and it did. Unfortunately I had to stay on gluten for nearly 6 months more while I waited for my endoscopy which turned out "normal" but the ****** dr didn't take enough samples, so eh. I'm back off the gluten now and my gnawing stomach pain, strange carbon-dioxide-tasting burps, scalp sores, and irritable bowel have all calmed down or gone away again.

I also have autoimmune pernicious anemia and hypothyroidism, both of which took some time to get properly diagnosed and treated but B12 injections and NTH (natural thyroid hormone) are slowly fixing me up! I have come to rather distrust most doctors and rely far more on my own research on health. Luckily I have found a great one who isn't patronising or dismissive.

There should be a Nobel Prize for whoever can come up with a gluten-free bread that's got the same texture and yumness as a fresh crusty baguette. I KNOW it's going to make me feel sick but I love(d) bread so much!

[nutralady2001]

Welcome !

Yes I agree about the Nobel Prize I've often said that LOL

I make my own bread using the Sunbeam Quantum bread maker and use Laucke's gluten free bread mix, available in most supermarkets

I also have Hashimoto's Disease/hypothyroidism