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beebs

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Everything posted by beebs

  1. beebs
    Nope - I still want a diagnosis. I mean- lets face it Gluten intolerance is treated like lactose intolerance by the general public - no matter how bad it makes you feel. Some people have life threatening reactions to eating gluten one time - ravenwood - myself, and when I say things like "Gluten makes me sick, gluten intolerance, gluten free" I can see how...
  2. beebs
    I would just like to point out this thread that couldn't have come at a better time - this woman had two negative biopsies and has just had a positive one 6 weeks ago! They are NOT reliable, its not black and white at all. Much like the ASD spectrum, not black and white!! I had negative bloods - I haven't had an endo but the Paed GI said there...
  3. beebs
    I dunno sandsurfgirl - we have a thing here (Australia) called medicare here where you get 80% back and then it goes up to 90% once you reach a threshold and our taxes aren't much higher than yours at all.
  4. beebs
    And the polenta! For goodness Sake! I mean - macro do a whole gluten free range - can't they just process all the gluten free on the same lines and all the none gluten free on the other lines - I mean really! Arrghhh!
  5. beebs
    My son had/has tummy pain- having said that it did show up as inflammation in the intestines, to be honest - everyone feels everything to do with this stupid disease differently. It can also take quite a long while to heal. Some people feel better instantly and others it takes years. I hope its not that for you guys, but 11 days is fairly recent. I'd give...
  6. beebs
    Apparently its 300! We have to be bigger and better than all the other diseases! Haha!
  7. beebs
    I had two stomach ulcers as well - no bugs or H Pylori or anything. Severe GERD, haven't had any issues like that since going gluten free.
  8. beebs

    ARCHIVED Maybe-Celiac

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

    If you don't keep eating gluten your tests will probably come back negative even if you are Celiac. Honestly- it is up to you. Do you need a diagnosis? Or would you rather just go gluten free if it makes you feel better? Personally I want a diagnosis - but I will most likely never get one - because I went gluten free with the thought of getting tested later...
  9. beebs
    Ps- if you didn't eat it for a month and then ate it and got sick that would mean that you have a problem with gluten. Maybe point out how common Celiac is - that it is badly under diagnosed (about 80% of celiacs have no idea they have it), that you have autoimmune diseases in the family - tell them its just a blood test to start. And that you will continue...
  10. beebs
    No, thats not correct. Just because she doesn't have Celiac does not mean you can't of inherited the specific genes from her. And even if she did have it, it doesn't mean that you would also have it. Complicated right? She has crohn's which is an autoimmune disease - the fact that there is autoimmune disease in your family means you have a higher chance of...
  11. beebs
    Hi Katie, If you want a diagnosis then you need to keep eating gluten as bad as it is. Otherwise your tests will come back negative wether you are Celiac or not. I cannot believe - with your symptoms that you haven't had an Endo. Do you have a GI? If not you need one, ring your Coeliac society and ask for their recommendations as to who is the best in...
  12. beebs
    The bloods alone have a up to a 40% false negative rate in children under 5 and around 15% false negative in adults, and the damage it the intestines is often patchy - so can be missed in the biopsy samples. That is actually common knowlege among Celiac specialists and in pretty much every medical journal.Negative test does not always mean you are not celiac...
  13. beebs
    It could be Gastritis/ inflammation/too much stomach acid/too little stomach acid, which can all be cause by celiac. My son had very bad tummy pains from Gastritis - it took a year of PPIs and a gluten-free diet to resolve. He has been medication free for about 2 weeks - so far so good. Stress can cause you to produce more stomach acid which in turn can...
  14. beebs
    Which is totally the right thing - she should be looking at all avenues for her illness. I think though, because it takes some of us years and years and many, many tests and loads of doctors to arrive at our diagnosis (or lack thereof) it's worth keeping in mind that sometimes tests come back negative even for celiacs. If you are one of the the "had...
  15. beebs
    I agree about getting tested for everything, I think sometimes alot of people tend to think its gluten because it might be easier than the alternatives - ie Crohn's etc. I still need a biopsy at some point - which of course will show up nothing in terms of Celiac as I am gluten free, but to rule everything else out as well. When my 5 year old went to...
  16. beebs
    I was talking to my Paed GI who is a world renowned celiac specialist, and he told me a story of a patient of his who had negative bloods and a negative biopsy. He was still sick awhile later so they got him to swallow a camera capsule to look further down and they found heaps of damage. You just cant get down that far with an endo. This kid absolutely has...
  17. beebs
    I had recurrent middle ear infections, perforated ear drums. I haven't had one since going gluten free last december. Which is so unusual for me! I also have heaps of the same symptoms as you. It It is possible to have false negative blood tests for celiac, also gluten intolerance won't show up in blood up work. But yeah - I have basically everything except...
  18. beebs
    Burning pain sounds like it could be your gastritis - which can absolutely be caused by celiac, my son had chronic gastritis - which he was on medication on for almost a year plus gluten free for that whole time and its only just come good now. So 11 months gluten free and medicated.. Sometimes it would get so bad he would be screaming and he couldn't walk...
  19. beebs
    I have anger too, I was told there was no way I could have celiac because I didn't have the genes, I only found out a few months ago that the test was never done And I do have the genes - but I have already gone gluten free and my symptoms are so severe I can't ever eat gluten again. My kids Paed GI (who is a celiac specialist) says there is no way in heck...
  20. beebs

    ARCHIVED Odd Symptoms

    beebs replied to K8ling's topic in Coping with Celiac Disease

    They are common side affects - and the should subside, but they do say it can take a couple of months to settle down. Nice huh??
  21. beebs
    What kind of pain is it? Sharp.Dull/ burning. On a scale of 1 to10 how bad? Is it similar to labour? Does it wax and wane or is it there all the time. When you say its related to stooling what do you mean? That you feel better after a BM etc etc?
  22. beebs
    Have they done an ultrasound? It really sounds like you need one!
  23. beebs
    yes- badly affect your teeth and gums if its sjogren's. Hope that it isn't!
  24. beebs
    Yeah- I've been getting it - from a reputable place that is an associate of the coeliac society = and I have never been contaminated - Now I just have to work out am I really not being contaminated - or am I one of those people who don't show symptoms to small amounts!!
  25. beebs
    I don't know about the US skylark - but here in Australia oats are a big no no, even the gluten free one. Its to do with how they are grown and stored here (co-grown and stored with wheat). Maybe it the same for OP??
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