Australians And New Zealanders Hellooooooo :)

[Di2011]

I can't handle sals (salicylates) so the berry ones aren't an option for me. I probably shouldn't even have the apple & cinnamon (due to higher sals in any dried fruit). Since my DH appears to flare with accummulative sals I only have the Crunchola probably once a week, twice at most. It seems to be still working for me whilst my DH is greatly improving ((finally!!!!!!!!!!))

[Di2011]

Do you know of any DH experienced dermatologists in Canberra or Sydney (Australia)?

I live in Canberra but would go to any in the region including up to Sydney.

Ta

BTW I've posted this in "doctors" forum also - no need to reply to both as I'll check them both.

[anabananakins]

I'm undiagnosed too - but I know its not intolerance, do you think maybe you were just one of the 15% false negatives? I never trust those tests anymore, I only had the bloods done, went gluten free with the knowledge that I was going to do a challenge - I was really, really looking forward to it, my first stop KFC chips with gravy and chicken salt - haha! Then ate gluten about 6 weeks later and ended up in hospital!

Yeah - same= porridge loses its sparkle when it costs that much - the whole point of it is its a cheap staple!

I've had doctors wonder about that Beebs, when I describe my long term symptoms and how they cleared up, it's puzzling and quite a few have said they'd be sure I was celiac if it weren't for the negatives (and some have pointed out the false negatives too). I gave it the best shot I could though, 4 months of eating masses of gluten before I was tested and they did the gene testing too and I didn't have the ones they look for so that was that, really. I tell people that medical science is still catching up as no one denies how much I improved gluten free, I don't get any grief over being undiagnosed. Being of english/irish descent I was surpised I didn't even have the genes, I don't know enough about the gene side of things to know if the ones I do have are perhaps associated with the neuro symptoms they are still researching. The reason I went strictly gluten free was because I'd been failing the romberg test for ages and when I started reading up on gluten ataxia it really scared me. My GP did some neuro tests on me before I went gluten free and so I could prove to her that I'd gotten better in that regard (the stomach stuff was more subjective and I think harder for her to accept with cause/effect). Anyway, as an australian who had doctors pretty aware of celiac and gluten intolerance and who still didn't get a diagnosis (but doesn't get any grief about being gluten free), my heart goes out to people whose doctors aren't even remotely aware.

LOl about the KFC. I was regretting yesterday that I didn't have a cheese burger in my final pigging out weekend!

ETA Diandliam, sorry, I don't. But glad to hear your DH is improving!! Also Freedom foods have been on special in woolies this week, I thought of you all when I saw the packets of cereal! (I resisted though as I'm trying to stay low carb for weight loss and my cereal-love is Chex from the US and I think it's better if I keep my cereal supplies accross the pacific and only eat what I can eat there or bring home :-)

[Saz]

For those of you who got negative results on the blood tests, did you also fail an edoscopy? Many years ago they used to say that the endoscopy was the truiest way to diagnose Coeliac. The technology incovled in testing has greatly improved but I heard of people who test negative to the blood test but positive to the endoscopy. It will only diagnose Coeliac, not other types of gluten itolerance.

Hope it doesn't like I'm having a go at anyone, just making a suggestion. Doctors can sometimes be a bit useless and don't always suggest all the options.

[anabananakins]

Saz, I didn't have one. I thought about insisting on it (I'd been reading/posting here before my testing) but by that point I was desperate to get off the gluten again and I don't think it would've been easy to get a referral for one and was tired of arguing with doctors. When my gene testing came back negative that was it, really. I'd already indicated to my doctor that I planned to go gluten free whatever the outcome and she supported that. Had I had the gene(s) she would've ordered the endoscopy, but it wasn't necessary for my compliance. I knew gluten was horrible for me and I resolved to behave as if I had celiac disease, an official diagnosis (or not) wouldn't change that. I was over blood tests, doctors and waiting and ready to move on with my life.

[Saz]

Can definetly understand that. If not eating gluten makes you well then it doesn't matter if it is official or not.

I was really to young to understand when I was diagnosed what it really meant. I think though for me if I was going through diagnoses now, I would want something to say the allergy was postive (whatever it was). Even if not having something meant I felt better, I would still find it hard to acept without a "name". Although for me this is mostly from an experience I've had dealing with another condition, nothing to do with allergy.

I guess for me been able to name something is my way of coping.

This probably doesn't make much sense. As I said if avoiding gluten makes you well then that's the best thing.

[mushroom]

I was never tested at all. For me, knowing that I had all the symptoms (Including other AI conditions), took the cure and got better means to me that I have celiac. To heck with their darned tests that they never thought to offer me.

[anabananakins]

Shroomie, it sucks that no one ever thought to offer you the tests, could've saved you so much pain

Saz, I totally get needing a name for it. I think had I not been reading/posting here during the months I was getting ready to go gluten free, I wouldn't have been successful, I wouldn't have stuck to it. There was a lot of encouragment to accept that the tests weren't always accurate and that a good trial was the best way to go. Once I felt better, I could stick with it. I wish I had a diagnosis so I could force my mother to get tested. But I have worn her down over the years since my answer to all the world's evils is "gluten" and she's really lowered her intake and feels much better for it. But she won't go gluten free and I haven't convinced her to take the test either.

It must be a really different experience going gluten free as a child or younger adult. I was 33 and by that age, my friends and I were all moaning all the time about how old and crap we felt, so finding something that made me feel great excited everyone (whereas when I was 20 and felt like crap, they didn't understand!).

[rosetapper23]

Happy Mum's Day to all of you wonderful mothers Down Under! I know that you're celebrating your Mother's Day today, while we in the U.S. will be doing so tomorrow.

My daughter, who lives in Sydney, sent me some of your lovely Butterfingers shortbread cookies and Haigh's chocolates, so I'm thoroughly enjoying my entire weekend! You have no idea how lucky you are do have such heavenly gluten-free products. I mean, gluten-free shortbread made of real butter??! Just about everything here that is a baked, gluten-free product is filled with chemicals and hydrogenated fats.

I hope you're all enjoying a fabulous day!!

[Saz]

It must be a really different experience going gluten free as a child or younger adult. I was 33 and by that age, my friends and I were all moaning all the time about how old and crap we felt, so finding something that made me feel great excited everyone (whereas when I was 20 and felt like crap, they didn't understand!).

Yea, in some ways I wish I hadn't been diagnosed until I was older. I'd always been alowed to cheat very very rare ocassions, I was never sensitive. Anyway when I got to about 15 I started to wonder what a lot of things tasted like, so I started cheating regularly. This was about 10 years ago before a lot of the nice or replacements foods we have now. Sometimes I'd go overboard and get ill but proberley due to been a bit immature I would just be good for week instead of all the time.

If it makes you feel any better I'm almost 25 and feel old and crap, especially when I hear teenagers speaking. I was never part of the "in" crowd but was hoping to at least make it to 30 before I felt "old".

[beebs]

For those of you who got negative results on the blood tests, did you also fail an edoscopy? Many years ago they used to say that the endoscopy was the truiest way to diagnose Coeliac. The technology incovled in testing has greatly improved but I heard of people who test negative to the blood test but positive to the endoscopy. It will only diagnose Coeliac, not other types of gluten itolerance.

Hope it doesn't like I'm having a go at anyone, just making a suggestion. Doctors can sometimes be a bit useless and don't always suggest all the options.

I was booked in for an endo, and then a few days before I found out I was pregnant. I was secretly thrilled as I was so scared to have one. I went gluten free - with the purpose of doing the challenge later ( higher rate of miscarriage etc is undiag coealics etc) phew. But now its all catching up with me - I have has some really bad symptoms lately and now the think that all those years of undiagnosed coeliac have caused some long term damage in my ospophegus and guts, doh, so now I have to have a bloody endo anyway. Boohoo - and I still won't get diagnosed. Its not even that I care so much about a diagnosis - but sometimes Its like my own brain is against me. I think maybe it isn't coeliac, I am a very reluctant gluten free person - maybe I am going through all this hassle for no reason. What if it isn't that and I won't ever have a crossaint again because of it etc etc!

[Saz]

Kind of know what you mean. I used to have thoughts along the lines of what if they got my results mixed up. I know that eating a lot of gluteny food makes me ill but still have thought of what if it something else common in gluten foods (dunno what) or if I had one those conditions that meant I could safely have a bit.

[mushroom]

Kind of know what you mean. I used to have thoughts along the lines of what if they got my results mixed up. I know that eating a lot of gluteny food makes me ill but still have thought of what if it something else common in gluten foods (dunno what) or if I had one those conditions that meant I could safely have a bit.

Be careful of what you wish for I have a severe lectin intolerance. Lectins are found in gluten foods along with gliadins - they are also found in dairy, nightshades, legumes, corn, soy, citrus, I am fortunate to not be intolerant to the dairy lectins, but I am to all the others. So for example no beans, peas, potatoes, tomatoes, lemons, Mexican food, Thai or other spicy food (chili is a nightshade) - no ethnic cuisine at all, really. I don't miss the soy though, just have a hard time avoiding it because as y'all know it hides in the shadows and jumps out at you.

[beebs]

Oh my god, I just had the best ever gluten-free bread experience. I went to a cafe in town that has a separate Coeliac menu. wahoo. Anyhow - I ordered a cajun chicken burger - it came with toatsed bread and at first I was a little disappointed - that didn't last long. This bread was AMAZING. So like the real thing that I was seriously worried I would get really ill really quickly. But no, its gluten free - I asked where it was from and for anyone lucky enough to live near Bathurst its made by Beck

s bakery on George st in Bathurst. I am in heaven.

[Saz]

Think I have posted about this before but a lot of Woolworths marinated meats are gluten-free, even the ones that they don't label. They have a new range that includes cottage pie, lamb cassorole and beef stew, some of them are ok for us. Of course you can make your own but sometimes you just don't have time or it's helpful to know what is ok have when explaining to people what they can make for dinner. Especially since buying the one marked as gluten-free will often be much more expensive, even if it's just got fairly reugular ingredients in it.

[anabananakins]

I have to have another glucose tolerance test and I realised that it's my first GTT since I went gluten free and I'm not sure about the drink. The ingredients are:

- Dextrose Monohydrate (wheat derivative)

- Carbonated Water

- Glucose

- Food acid (330)

- Flavour, preservative (202, 211)

The brand is GLUCAID.

I cannot find anything useful online about it (though what I have seen seems to indicate the dextrose is gluten free) but the fact they are asking makes me wonder.

Does anyone know? I am *so* not looking forward to this, the last two times I was wiped out for the rest of the day. At least I always seem to have them in winter and I can go home and crawl happily into bed.

[anabananakins]

Oh my god, I just had the best ever gluten-free bread experience. I went to a cafe in town that has a separate Coeliac menu. wahoo. Anyhow - I ordered a cajun chicken burger - it came with toatsed bread and at first I was a little disappointed - that didn't last long. This bread was AMAZING. So like the real thing that I was seriously worried I would get really ill really quickly. But no, its gluten free - I asked where it was from and for anyone lucky enough to live near Bathurst its made by Beck

s bakery on George st in Bathurst. I am in heaven.

I never get to Bathurst anymore unfortunately... is that also where the cafe was or was that in Sydney? It sounds great!

[beebs]

I never get to Bathurst anymore unfortunately... is that also where the cafe was or was that in Sydney? It sounds great!

The cafe is in Bathurst - its called Ellie's and has the biggest coeliac menu you have EVER seen. I seriously almost fainted from excitement. A whole menu where we can eat whatever we want!!

[beebs]

I have to have another glucose tolerance test and I realised that it's my first GTT since I went gluten free and I'm not sure about the drink. The ingredients are:

- Dextrose Monohydrate (wheat derivative)

- Carbonated Water

- Glucose

- Food acid (330)

- Flavour, preservative (202, 211)

The brand is GLUCAID.

I cannot find anything useful online about it (though what I have seen seems to indicate the dextrose is gluten free) but the fact they are asking makes me wonder.

Does anyone know? I am *so* not looking forward to this, the last two times I was wiped out for the rest of the day. At least I always seem to have them in winter and I can go home and crawl happily into bed.

I can't say either way = but I had to do those tests when pregnant, and they made me feel really nauseated - they said that was normal, but I was heaving and stuff, Ring the company to make sure I reckon!

[anabananakins]

Beebs, I'm thinking I might need a weekend in Bathurst, lol. I used to go there all the time - I had family there - but haven't been in years.

The GTT is an awful test, I got very weak and lightheaded, the receptionist kept yelling at me to keep me awake. I'm sorry you were nauseated, that sounds even worse

[Saz]

All of those who can need to rush of to your local Coles and buy the gluten-free English Muffins they have started selling. They are the latest addition to the the Livwell range, which include pita and bread roles. They Muffins are $7 for a pack of 4 but I don't know of anywhere else in the country that sells them. (unless you are lucky enough to be Sydney)

I know I post alot about new products, figure this the place to do it. Have seen lots of good products dissapear over the years, presumbly because they aren't selling well.

As I've stated many times, I hate having to pay so much for everything but at the end of the day I'd rather do that than go with out.

[Saz]

OHHHHH!

Have just looked at the Coles website and it seems that they are also doing Crumpets! Ridonkulusy excited about this. The downside is that I can't seem to find the Bellyhoo pies listed anywhere. Just when it's gotten cold enough to enjoy them!

[beebs]

OHHHHH!

Have just looked at the Coles website and it seems that they are also doing Crumpets! Ridonkulusy excited about this. The downside is that I can't seem to find the Bellyhoo pies listed anywhere. Just when it's gotten cold enough to enjoy them!

Yaya! yay! Yay! I lurve crumpets! They aren't doing bellyhoo anymore at my coles either, majorly upset, I didn't even feel bad paying that price as they are so good!

[Di2011]

One of my rare Sundays I can get to a Coles tomorrow. Will hope to get there tomorrow and let you know:)

[anabananakins]

Ohhhhh, english muffins!!!!! I had them in the UK, they were good! And crumpets!!! I had them cold in the UK which wasn't bad but I couldn't toast them because it was a shared toaster. That's so sad about the bellyhoo pies though I haven't had one in a while (it's really hard to eat low carb when there's all this goodness coming out!) but they were there at coles last time I looked (a week ago maybe?) It would be a shame if they stopped selling them. They were so good they should take the gluten free label off (or rather, make it smaller) and sell them in the regular pie section, give sara lee a run for their money. Would get them more sales because most people would see gluten free and think ugh.

BTW, Douglass Hanley Moir gave me glucodin powder mixed in water as the glucose drink. It tasted like icing sugar and water, lol, the first sip was great but the rest of the cup was pretty gruesome. It's 100% glucose though so didn't have the gluten issue as the pre-made drink they usually give.