Mack the Knife

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Everything posted by Mack the Knife

  1. I was diagnosed with coeliac 6 months ago. Since then I have been following a strict gluten free diet but haven't improved much. I've also developed a recurring rash on my scalp which I suspect might be DH. About the time I was diagnosed I started getting numb fingertips on my left hand. This has worsened over time. Now I get varying degrees of numbness in my left hand fingers extending up the side of the hand and arm to the elbow. I've also started getting occasional numbness on my right hand's fingers and the toes of both feet - but not as badly as my left hand. I've also been getting joint pain occasionally in my knees that co-incides with the toes numbness. My extremities have always been prone to getting very cold. But this last month I've had two occurrences of all my fingertips going completely numb and bone white. Except under he finger nails which went dark purply/black. It freaked me out because it looked like frostbite for no apparent reason. I went to see my doctor and specialist and it turns out I have something called Raynaud's Phenomenon which is an autoimmune disease that affects the blood flow to the the body's extremities, ie fingers and toes. My specialist says it has strong links to coeliac like a lot of other auto-immune disorders and that getting coeliac probably triggered it.'s_phenomenon Does anyone else have this? I've been googling pictures of it and I've convinced myself that my digits are going to become gangrenous and need to be amputated. The internet is a dangerous thing.
  2. Hi Sammykins. I have blood test and biopsy proven Coeliac disease - and I don't have either the DQ2 or DQ8 gene. So it is possible. But if you are off gluten and feeling better then you should stay off gluten. It's not worth making yourself sick again just for a definite diagnosis.
  4. Australian Coeliac disease expert Dr Jason Tye-Din is interviewed in this radio show. His interview starts at about 24:25 mins.
  5. Dr Jason Tye-Din (a world-leading Coeliac disease specialist) and Dr Sue Shepherd (a dietician who specialises in Coeliac disease) are interviewed on the Australian radio station 3AW. feed://
  6. Mack the Knife

    Wheat In Nz And Australia Has No Affect On Me

    I'm from Australia too and I have no idea why you didn't react to the wheat here in Australia. We certainly have a high rate of Coeliac disease here. In fact our diagnosis rate is higher than the U.S.. Australia has a massive wheat industry, so you were probably eating wheat that was grown in Australia - not the usual GM patented wheat grain that you might be eating in the U.S.. But Australian wheat isn't anything special, and is certainly still chock full of gluten and may well be genetically modified as well.
  7. Mack the Knife

    How Many Of Us Assume A Gfd Will Fix It?

    It took me more than two and a half years on a very strict gluten free diet before I really started to feel better. Some people just take a while to heal. My specialist says it is not uncommon. The one thing I probably should have done differently was be a bit kinder to my intestines while they were healing. I should have ditched coffee and alcohol and stuck to things that were easy to digest. I think an SCD diet is probably not a bad idea for a while.
  8. Orgran bread mix can be made as vegan bread. I've tried it that way and it is quite nice. But it does taste better when you add the egg and milk powder. I think that Silly Yaks bread is vegan but you need to check that because I'm not certain.
  9. I have posted this link in the Publicity and Publications forum but I just realised that it probably belongs in this forum. Sorry for the double posting. This is an interesting video of a public lecture about the latest advances in coeliac disease research that was held in Melbourne Australia last month. Some of the world's leading experts on coeliac disease talk about their research.
  10. I'm not sure about the gene thing. Genes come in pairs so nobody has just the HLA DQ2 gene (except for a few people who are double DQ2). The researchers are saying that the vaccine will benefit 90+% of celiacs so I think this means that you just have to have the DQ2 gene and it may not matter what the other gene is. I am one of those rare celiacs who doesn't have either the DQ2 or DQ8 gene so I am not holding out a lot of hope that the vaccine will ever benefit me personally. It's still pretty exciting though!
  11. Article from The Age April 10 2012 Cereal Offender
  12. The MCG in Melbourne has gluten free pies and the members area has gluten free beer. they also have a Spud Bar which has lots of gluten free options. Rod Laver Arena sells gluten free pies during the Australian Open.
  13. Mack the Knife

    First Time On Plane Celiac

    There used to be a few health food shops in Melbourne that carried a very limited range of Lara Bars. But they all seem to have stopped selling them recently. I wasn't a fan to be honest. They were very dense and sticky. I always need to drink a litre of water after eating one to wash it down. I eat Carman's Fruit Deluxe muesli bars which you can get at most supermarkets in the regular muesli bar aisle. They're labelled gluten free and are the same price as regular muesli bars. Plus they are delicious. I'm not a fan of Trio bars either. I tried one and it tasted like bubble gum which just seemed wrong.
  14. Yeah. I think you should let your daughters go trick and treating - and then they can come home exchange their loot with you for an equal amount of gluten free candy. Then you can keep the candy they can't eat and give it away next Halloween. Maybe give you daughter some gluten free candy to take with her though so she's not tempted to cheat during the evening.
  15. Mack the Knife

    Burger Joint - Gluten Free Buns - Same Toaster?

    What about Deeks? That gluten free bakery in Canberra. Do they do burgers? I believe that Burger Fuel and Lord of the Fries both offer gluten free buns now. I don't know about their cc awareness though.
  16. Mack the Knife

    Burger Joint - Gluten Free Buns - Same Toaster?

    The bun is the most easily solved problem. Grill'd use a conveyer belt toaster (which is always COVERED in crumbs - so they just need to put your bun on a piece of baking paper when they put it through. I don't think the meats will be a problem there. Most of the veggie burgers contain gluten so maybe check that they don't cook them on the same grill as the meat. It's the toppings that are the big problem. Maybe talk to the manager at your local store and discuss the cc issue.
  17. Mack the Knife

    Burger Joint - Gluten Free Buns - Same Toaster?

    Grill'd have no idea about cc. Stay far, far away from them. Not only do they us the same toaster, but they also use the same spatulas to spread the toppings on gluten-free and non-gluten-free buns and double dip continually. They also hold the non-gluten-free buns over the toppings containers while they spread them. I've seen them do this and watched in horror as big chunks of toasted bun fell into the toppings. Where in Australia are you? I'm in Melbourne and I get my burgers from either SACS or Black Ruby. Both places are 100% gluten free and their burgers are good. I don't think I'd trust anywhere else.
  18. Don't forget that The Irresistible Gluten Free Fod Show is on next month. They always have a big range of products. I'm going to go and sample food until I make myself sick. Last year they had gluten free Wagon Wheels. Fantastic!!!!
  19. I'm in a similar situation. I've been on a strict gluten free diet for 18 months and I'm still feeling sick. I am really careful to the point of paranoia so I'm pretty sure I am eating completely gluten free. My levels were 120 when I was diagnosed and have dropped to 81. But now they're not budging. I'm going in for a scope soon to check what's going on in my intestines. I think your son should do the same. It's such an easy procedure and getting more info about your son's health is worth the minor inconvenience.
  20. Only about 50% of adults have complete intestinal healing after 2 years on a gluten free diet. But you should be showing definite improvement by now.
  21. It usually takes 3-6 months for blood tests to come back as normal after starting a gluten free diet. Sometimes it can take up to a year but kids do generally recover faster than adults. But I wouldn't worry about three days. Just put him back on gluten until you finish the testing.
  22. I went to NZ earlier this year for the Asia Pacific Outgames in Wellington and it was awesome. Australia is pretty good at gluten free but NZ is even better. I had no problems eating out gluten free. Most cafes had gluten free bread options (even in the small towns) and I was even able to get gluten free pancakes at a few places. The gluten free options were a little bit more expensive but not outrageous. There is a high awareness of Coeliac disease in NZ so staff are pretty good at most places. You'll be able to buy all your gluten free essentials at regular supermarkets and Burger Fuel has gluten free options. Feel free to pack food though. As long as it is packaged, unopened food you shouldn't have any trouble getting it through customs.
  23. Mack the Knife

    I Need Help From Other Aussies! :(

    Are you at a private school? It sounds like it. They're probably worried that you are going to mess up their academic pass rate. No. They definitely can't expel you for being sick. Especially not if you have an official diagnosis. Have you been getting medical certificates for the days you have been absent? Probably not if there have been a lot of them. You should ask your doctor or specialist to write an offical letter to give to the school explaining that your frequent absences have a real medical reason. In the meantime, you need to call your state branch of the Coeliac Society and have a chat to them. They are very helpful and will have helped others in your situation deal with the same problem.
  24. This has happened to me too. My Ttg was 120 when I was diagnosed with a positive biopsy. I got tested again after 12 months on a strict gluten free diet and it had only dropped to 75. Now after 18 months it has crept back up to 81. Apparently it is not unusual for it to take a while for levels to return to normal but 18 months is too long. So I am jumping through all the medical hoops to figure out what is wrong and trying to figure out if I could still be getting gluten from somewhere (I live in a gluten free household). The most common reason for levels not going down is ongoing gluten intake (accidental or deliberate). Has your son had a follow up biopsy yet?
  25. Mack the Knife


    I've been on a strict gluten free diet for 18 months now and I'm still getting sick on a regular basis. My latest blood test came back strongly positive for Coeliac disease so it seems like the problem is that I am getting exposed to gluten somehow rather than some other food intolerance. I am very careful about what I eat. However I do eat out a lot. So for the last few weeks I haven't eaten out at all - and I've gotten sicker. So now i think that there must be something at home that I am eating on a regular basis that is making me sick. SO I've been going through my kitchen trying to figure out the problem. I live in Australia where we have extremely strict food labelling laws (products labelled gluten free must test < 3ppm and wheat/barely/rye/oats must be declared on labels). So it is unlikely that products that are labelled gluten free are making me ill. I figure it must be something that is gluten free by ingredient but is contaminated during processing. I don't eat much processed foods. But I do like to cook and I use a lot of single ingredient spices. So I went through all my spices and turned up a few packets that say in very fine print, "May contain gluten due to shared equipment". So I rang all the major spice companies and they all process their single ingredient spices on the same equipment they use to make their seasonings (which contain wheat starch and wheaten cornflour). They all say they wash the equipment between different products but who knows how controlled that process is. So my question is... would that be enough to make me sick or am I being paranoid? Could I be eating enough minute amounts of gluten for it to have a cumulative effect? I don't get very sick but I do feel low level crap a lot of the time and something is definitely keeping my antibodies active