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beebs

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Everything posted by beebs

  1. Your symptoms absolutely could be celiac. Are you in the states or somewhere else? The reason I ask is because over here in Oz you can get the genes test bulk billed but you can't in the states and I believe its very pricey. Do you actually eat gluten? If you don't the tests will come back negative regardless of if you are Celiac if you are gluten free...
  2. I know - it just drives me mad that I can't get a diag. I know its not the be all and end all. And its in my family and I have the gene and my symptoms are so severe it really couldn't be an intolerance...but its feels like unfinished business!! Ya know? Maybe I need to get a hobby!!
  3. This is taken from freedom foods website "We
  4. I rang the Celiac clinic in Melbourne the other day and they were saying they are working to change the way diagnosis is made as well. You would have to have a very high reading on the bloods though. I don't meet those 5 criteria due to screw ups with testing and Drs - none of it my fault and if it had been done properly I have no doubt I would have been...
  5. Well - that was kind of my point..what I meant was - either be gluten free - or don't, don't try and have it both ways. I am willing to pay extra for gluten free products....as someone else pointed out here in Australia it is only considered gluten free if it is 3ppm or less. And that is fine for me. Expensive maybe - but we just eat heaps of rice and potatoes...
  6. I've had pleurisy related to other autoimmune diseases. It sounds as if it could be that - I'm not sure if its to do with glutening though...good luck
  7. Hi there, I haven't had to put my kids on a challenge yet - they are both gluten free and doing heaps better without an official diagnosis. I have thought about it...and I might do it - but I'm not sure. One of the things that makes me think about not doing it is the high false negative rates in kids even when consuming gluten! To be honest I had a nightmare...
  8. Although I did read in the Coeliac magazine they are currently testing 20ppm on a study group - it looks like we are heading in the same direction. I can see why people are getting scared and upset about this - it must be hard when you are the few who are very sensitive. I am not super sensitive - but I have severe reactions to eating gluten which can...
  9. Oh - another thing, if you keep eating gluten you could trigger another autoimmune disease, and the rest of them cannot be controlled by diet alone. I have two confirmed and another one that I'm undergoing tests for. They are just awful and the medication is poison -ugh!
  10. Its interesting - because I was just saying to my mother the other day - in a way my severe reactions are a blessing. I don't think I would do the diet if I didn't get really ill with it. I'm one of those - 'it'll all be ok' people. I guess maybe read some of the stats on gluten consumption - depending on which study you read celiacs who don't follow...
  11. Really? ? Deadly nightshade? Arsenic? Digitalis? Fine in moderation my foot!
  12. There is also a vaccine that is currently being tested - but its years away as well Open Original Shared Link
  13. I don't get D - but I was glutened about a week and a half ago now and I still have some symptoms - I had GERD so bad that I couldn't swallow for days - agonising and nothing was working...I felt like Homer Simpson "just working the turkey down" But yeah - it can take me a couple of weeks to come good again!
  14. Yeah - it comes in waves - like contractions...I'd talk to your GI about your reaction though, just so he/she knows whats going on etc
  15. Those tests have a notorious false negative rate. Seriously - you should be having a a biopsy with your symptoms regardless of what the test says. IBS is a non diagnosis - its like a "we have no idea, so we'll call it IBS type thing" You should ask to be referred to a GI. Ring the coeliac society in your state and ask who they recommend in your area.
  16. i've tried the sausage rolls, pizza things and meat pies. Not a great fan to be honest!
  17. I get extreme reactions to eating gluten as well. It doesn't sound exactly the same - but I get itransient intussusception, I've had it 5 times and its very similar to being in labour. Agonising isn t the word - It's so bad I can't talk. Anyhow - if it *is* that then yes- its dangerous and you need to let your specialist know. It can be life threatening...
  18. Ack! That sounds horrendous! I cant afford to get glutened! I'd be eating meat and veg if I was over there. Its good to know about the bobs mill stuff as they sell it here and I was going to buy it!!
  19. They did the same thing for me too- ended up being a pancake type thing - although they did taste good. Ive got the donuts in the pantry so I'll let you know. Did you mean the 'patties' lamingtons anna? If so they are delish- heated up in the microwave - you'd never know they weren't wheat!
  20. Wow- I never realised how lucky we are in OZ until this post. Everything that is made in Australia has to state if it has wheat, barely, rye or is processed on any of those lines. It also has to have "may contain gluten" if there is any chance of it. It must be so difficult to sort through all that stuff over there
  21. I have a swollen one on the left side of my neck - it can be due to autoimmune diseases - things like lupus etc. I'm not sure about celiac -but mine hasn't gone down and I've been gluten-free for almost a year now...
  22. Omigod - I used to work in a place like that in Canberra - the Carotel!
  23. I guess I know now to 'trust my instincts' for years I had Drs basically treating me like a hypochondriac- now all those bizarre symptoms make sense and I know I'm not crazy!
  24. It seems to be a very specific pain - like they point right at their belly button - it can get quite severe as well to the point where they can't walk -sometimes its just an ache. There is no real way to tell unless they have a biopsy - but if she has a tummy pain and you give her gaviscon or mylanta or something like that and it resolves - then yes it could...
  25. I answewed my own question... I accidently got glutened yesterday and ended up getting intussusception again...ugh.
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