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beebs

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Everything posted by beebs

  1. beebs
    My son asks if things are "Glueden free" and then if I say no he'll say "yuucckk, I don't like it then" I wish I knew this trick back when he used to have tantrums in the sweets isle!
  2. beebs
    That is crazy Saz! The one in Sydney was completely gluten free and it was free to get in!!
  3. beebs
    No, she was telling people even before going gluten free to not get the blood test. No one is saying do a challenge. We are talking about chronically ill children as well - so what if it isn't even anything to do with celiac - or what if its celiac and something else? My son had a borderline celiac tests - he is much much better gluten free - but it has become...
  4. beebs
    I went to the gluten free expo and taste tested until I could no more. Otherwise I just peruse the gluten-free isles and try whatever strikes my fancy. I'm currently in Sydney but about to move to the central west NSW.
  5. beebs
    Hate that! I just had an argument with someone today who says that her whole family has coeliac but none of them has been tested (along with a myriad of other medical complaints)- then she tells people on the internet just to go gluten free without testing. Drives me mad. Its like she wants her family to be coeliac. Whereas my family have been in sickness...
  6. beebs
    I've been watching your posts with interests - due to having two children going through much the same thing - but also because your daughter has i/s and so do I...its really very rare - so it perk my interest straight away. I promise you - far often than not you cannot see the damage to the villli with the naked eye - it hardly ever happens. So they will...
  7. beebs
    I have a really bad affliction, I can't lie...or even fib ever, my mother thought it was the best thing ever when I was a teenager - she knew about everything at all times!!
  8. beebs
    Its really up to you what you prefer to do. Is a diagnosis important to you? It is to me and I didn't get one, I wish I'd just had the biopsy when I had the chance. But there are lots of people on here who are comfortable knowing that gluten affects them badly. If you decide not to and think that you can do a gluten challenge at a later date, just be...
  9. beebs
    Most formulas are gluten free (in Oz - not sure where you are) so I wonder if there is even gluten in it? Ring the company and see. Also - do you have any other reason to suspect DH? It isn't chickenpox or something -they are fluid fill blisters as well...
  10. beebs
    Getting a diagnosis. All my specialists, my kids GI (who is a world renowned celiac specialist) and my GP all agree that I couldn't not have celiac, but because of the stupid rules on diag here I can't be diagnosed!! I hate that, drives me insane. Because when I'm in hospital and stuff its all like "I need gluten free" blah blah "haven't got an official diag...
  11. beebs
    Water was the absolute worst thing for my GERD, it got to the point where I had to swallow and re-swallow again and again just to get one mouthful down. Also having a tablespoon of vinegar when you have an attack. Not sure how effective it is but my DH swears by it and I have heard others say it works as well. Not malt obviously. Yeah - sounds like you...
  12. beebs
    I have read that it is not possible for you to feel it immediately because it takes a little for the immune response, the paed GI also said the same thing the other day, but I also know from this site that there are lots that don't match up with what the medical community say and believe. So maybe they are wrong on this too? I personally have reactions start...
  13. beebs
    Yeah - I love Atom. I feel like a normal customer there!!
  14. beebs
    Ok, thanks Apparently there is an interesting study on GI that has come out of Melbourne, Aust - our Paed GI recommended I read it, but I have forgotten his name. I'll link it if I can find it!
  15. beebs
    We haven't done the challenge yet - but before we went gluten-free my son was sooooo picky - it was a nightmare. Now that he is gluten-free its all changed around.
  16. beebs
    This is for your little girl right? Honestly - the blood tests have a very high false neg in children. So even if its neg it means nothing, and any GI worth their salt will know that and do an endo no matter what the bloods say.
  17. beebs
    Ohh sorry!! I misread! Maybe this new way of testing (Gliadin straight on to biopsy) will help us one day!!
  18. beebs
    Although I believe that if you have gluten intolerance as opposed to Celiac you are at no higher risk of other autoimmune diseases, is that true?
  19. beebs
    Hi guys, Can those who have gluten intolerance please tell me your symptoms -I am trying to work out the difference as I am undiagnosed and am probably going to remain that way (not by choice). So I am trying to work out which is more likely. Thank you!!
  20. beebs
    I personally think he should have the biopsy first. I didn't and went gluten free with the intention of doing a gluten challenge later - now my symptoms are so severe when I ingest gluten that I end up in emergency. So I am in diagosis limbo - I just wish I had done it earlier.
  21. beebs
    Wow - what a roller coaster. I hope they find out what is going on for your poor little guy. TB can come back neg even when positive, it can be very difficult to diagnose sometimes.
  22. beebs
    My GP said that they spent an entire 7 minutes on coeliac disease throughout their entire medical degree. So that explains normal drs - but you'd think that GI's would know more. My mum's GI was convinced she had bowel cancer and only that the registrar on the day of her biopsy thought to take some extra biopsies to check for Coeliac that it was found. Otherwise...
  23. beebs
    Straight away he doesn't sound like he knows anything about celiac and parents with autoimmune diseases and stuff ( I have a few too). Have you a coeliac society where you are? Ring them and ask for the best Paed GI that they can recommend- then get a referral from your Dr. The first Paed we took my eldest too told me he had toddler d and that there was nothing...
  24. beebs
    Why don't you get a scope now to see if the damage has healed and then do a gluten challenge and then another scope to see if there is damage - that way you'd know for sure if it was celiac.
  25. beebs
    Nope - blood test showing false negatives are common. I would absolutely suspect coeliac first in your sons case - especially with your family history. In fact my kids Paed GI told me today that he had a teenage patient who was negative on the bloods and then negative on the endo biopsy. He was still sick and losing weight and eventually they got him...
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