Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Australians And New Zealanders Hellooooooo :)

Aussie Peg

Recommended Posts

Di2011 Enthusiast
Di2011
Posted

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!!!!!!!!!!))

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 997
  • Created
  • Last Reply
Di2011 Enthusiast
Di2011
Posted

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 Explorer
anabananakins
Posted

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 Explorer
Saz
Posted

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 Explorer
anabananakins
Posted

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 Explorer
Saz
Posted

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 Proficient
mushroom
Posted

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. :P

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


anabananakins Explorer
anabananakins
Posted

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 Explorer
rosetapper23
Posted

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 Explorer
Saz
Posted

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 Enthusiast
beebs
Posted

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 Explorer
Saz
Posted

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 Proficient
mushroom
Posted

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 :ph34r: 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. :rolleyes:

beebs Enthusiast
beebs
Posted

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 Explorer
Saz
Posted

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 Explorer
anabananakins
Posted

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 Explorer
anabananakins
Posted

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 Enthusiast
beebs
Posted

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 Enthusiast
beebs
Posted

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 Explorer
anabananakins
Posted

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 Explorer
Saz
Posted

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 Explorer
Saz
Posted

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 Enthusiast
beebs
Posted

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 Enthusiast
Di2011
Posted

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

anabananakins Explorer
anabananakins
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,561
    • Most Online (within 30 mins)
      7,748
    Valentino
    Newest Member
    Valentino
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.