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beebs

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Everything posted by beebs

  1. beebs
    Some of us are from countries where we have medicare/NHS and they still won't diag without a biopsy. Actually here you need a biopsy no matter what. The paed GI was saying today that it takes so long for anything to change in the medical community - partly because noone ever agrees about anything. I wonder how long it'll be before we start seeing the new...
  2. beebs
    I go to a highly recommended GI who is a celiac specialist and has done loads of studies etc. Anyhow - in the beginning he even made us do all that stuff like parachoc and all those stool softeners for the kids, he kept saying " he was almost sure it wasn't gluten related" because of the negative bloods - I think he was just ruling everything out. Now he...
  3. beebs
    Two things jump out at me ; a) I have never heard of a test where you go off gluten for a week and then introduce gluten capsules. This seems very very odd to me - as it takes some people years on a gluten-free diet to see the difference. Some people take months and some days. Seriously - a week is nothing in terms of gluten-free diet. Tests are...
  4. beebs
    Not so much emotional scars- but I am angry that there is a big possibility that all the other autoimmune stuff I have going on which showed up in the last few years are as a result of eating gluten when I shouldn't have been. I sometimes think it isn't fair - and if I had only known, if someone had tried to find out what was wrong with me (drs) then I wouldn...
  5. beebs
    Yeah - that would really. really annoy me too. And I was a vego for 10 years! It is nowhere near the same at all in any way shape or form!
  6. beebs
    4) - Lost count. I remember about 12 years ago being given an epi pen because they thought I had an allergy to MSG 5) First day! One of my symptoms was severe GERD which I was medicated for for years. Removing gluten has meant I have never had GERD medication since - that was almost a year ago! One of my other symptoms is Intussusception, I...
  7. beebs
    Nothing to do with Super sensitives but because you have bakery experience maybe you should get a job at deeks - grain free bakery/cafe in Canberra. Open Original Shared Link
  8. beebs
    Yeah - I reckon after testing is done, even if its negative then try the gluten-free diet - I am not one who usually thinks everyone should do it willy nilly, but there is a connection between transient i/s and celiac. And the testing can be false negative - especially in kids.
  9. beebs
    The tests are notorious for giving false negatives to children anyway. So even if it showed nothing I would still hope they would be giving her a biopsy. Good luck - I hope that you get some answers!
  10. beebs

    ARCHIVED Blood Type

    beebs replied to cat3883's topic in Coping with Celiac Disease

    O positive I think? Which is the common one? Hazel eyes/brown hair, Irish descent
  11. beebs
    Hi Kate, Wow- is it your daughter!? Sounds like it absolutely could be celiac causing transient i/s - the problem with that is that Drs don't know anything about celiac anyway and they know even less about the connection between transient i/s and celiac. Anyway you can find a Celiac specialist in your area? Where are you? States or somewhere else? Make...
  12. beebs
    Because mine is transient (at this point) it has so far resolved on its own - who knows how long that will continue to happen? That in itself is extremely rare - usually you end up in emergency surgery having parts of you bowel removed- that is the far more common scenario. However Transient I/S is the one that is associated with celiac. Remaining gluten...
  13. beebs
    I eat snickers all the time and have never had a problem, I'm not super sensitive or anything.
  14. beebs
    I get transient i/s from gluten ingestion. I have had it 5 times since 2009 at first I didn't connect it to gluten at all. But then I went gluten free for other symptoms and 6 weeks into the diet I went to a restaurant and broke the diet, within 2 hours I was projectile vomiting and then the agonising pain started - My mum took me down to hospital but because...
  15. beebs
    Yeah- even if it isn't gluten related there is obviously something going on there. They always try and pass the buck with the ole "Toddler diarreha" call. So irritating!
  16. beebs
    Oh goodness. I admit I used to be one of those ignorant awful people. My mother was diagnosed after years (probably about 40) of sickness that just got worse and worse and she ended up dropping half her body weigh - she looked like she was in a famine. Anyhow - I remember saying to her one time that I wouldn't care if gluten made me sick - I would never give...
  17. beebs
    When they did the bloods did they check for deficiencies? I had lots of trouble getting anyone to take my little one seriously - had a Paed tell me there was nothing wrong when he was so iron deficient he couldn't breathe and developed a heart murmur. I then started researching and found the best Paed GI who knew heaps about Celiac. And lucky for me he was...
  18. beebs
    Yeah, GERD was a big problem for me, had it badly for years and years to the point the acid would bubble up in my esophagus and I couldn't swallow, stomach ulcers etc. Was taking medication everyday for it. And the day I went gluten free was the day my acid stopped and I've never needed medication since (unless I get glutened) ....who knew it would be so...
  19. beebs
    What about this new way to test - I wonder if its available to us here/in the states/UK etc? Where they do the biopsy and put gliadin on the biopsy therefore cutting out the need for a challenge. I really think we ought to start pushing for this!
  20. beebs
    I accidently ingested some of my wheat containing facial night moisturiser the other night:( Honest mistake - I accidently got it on my lips and then licked my lips and thought - eww - what is that, that tastes gross!
  21. beebs
    BRILLIANT - this is so fantastic. I hope they start using it here and soon!
  22. beebs
    I tried that heating pads, nifedapine and evening primrose oil. The LC said our attatchment was perfect, used to go and see her every couple of days and she was flummoxed. But I had it really bad even when I wasn't bfing - so I think that just made it worse. I used to think it was normal - it was only when I went to see the rheumy did I find out that not...
  23. beebs
    At the risk of TMI, I have severe nipple vasospasm (that was my first clue that anything was wrong autoimmune wise) and after my first child was born and trying to feed for 3 months in agony a lactation consultant referred me to a rheumy which is where all the autoimmune stuff started to click together. Also after this baby I developed a bad infection that...
  24. beebs
    Oh my god - all this time I have been using night moisturiser that has wheat in it....I had no idea that I should be avoiding it!
  25. beebs
    Hey Skylark, that is why I asked - because I had read something that said the same thing. And now they are saying the same thing about high allergen foods - introduce nuts, eggs etc at 4 months and there is something like a 60% Reduction in anaphalaxis! He isn't breastfed - due to my autoimmne diseases I can't. So already he is on the backfoot in terms...
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