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beebs

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Everything posted by beebs

  1. beebs
    I was going to mention Sjogren's too. There is a correlation between Celiac and Sjogren's. I have lots of sjogren's symptoms but negative bloods. But lots of sjogren's sufferer's have negative bloods - about 30% if I remember correctly. It would explain the joint pain as well as its a connective tissue autoimmune diseases - they call it a cousin of lupus...
  2. beebs
    Well - so he had Marsh 2 changes which isn't sufficient for a diagnosis apparently. Only Stage 3 or 4 are. But at stage 2 its considered suggestive. Not to mention that his grandma is confirmed celiac and I am almost certainly celiac but with no biopsy. He is two years old and on nexium for probably the rest of his life if we can't figure out what is wrong...
  3. beebs
    Unfortunately Celiac being an autoimmune disease means that anyone who has it is predisposed to get other autoimmune diseases. I have lots of connective tissue type issues and see a rheumy because of it. One of the things that stands out to me in your post is the constant chest pain. I get that and its pleurisy and can be related to other autoimmune diseases...
  4. beebs
    Holy cow. Which means that that I can't really rely on those biopsy results at all because only 3 samples were taken! Doh! Thanks!
  5. beebs
    I had some of the same symptoms - GERD, consi, sudden lactose intolerance for 3 months and then it went away, constant painful nose and mouth ulcers, bad foot cramps and I also had elevated ESR and CRP rates all the time for what seemed like no reason - also elevated liver function and elevated bilirubin. I'd be asking for a celiac panel and genes test...
  6. beebs
    Two of my kids have had biopsies done. One tested borderline for coeliac and the other negative - they both have long histories of malabsorption syndrome, severe anemia, both have GERD Gastritis and one has all kinds of inflammation that showed up in the biopsy (the one who tested borderline) they both have steatorrhea. I just found out only 3 samples where...
  7. beebs
    I was talking to the Coeliac society here in Oz about this very thing the other day - basically they are very close to a vaccine - 5 years maybe less, only those who are officially diagnosed will be elligible for it....I haven't got an official diag - doh!!!! I think people should keep that thought in their mind when deciding on an official diag vs gluten...
  8. beebs
    I'm a total gluten lover as well. It gets easier I promise..also gluten-free food is getting better and better. Re your son and needles - my kids have had heaps of blood tests at this stage, we have a numbing patch over here in Oz called EMLA, not sure if you can get it in the US but I assume you can - probably under a different name. Anyhow you just put...
  9. beebs
    The Planet organic oats are labelled gluten free - so I assume they must be??? Who can afford $9 for 500g though! Ugh!
  10. beebs
    Hi there, I'm from Sydney but we are relocating to regional NSW soon:)
  11. beebs
    Its a tough one - I'm not sure wether to take a chance and just go for a biopsy and hope it shows up something. I have been gluten-free for 8 months.
  12. beebs
    I was just wondering if it is possible that after 7 months gluten-free that a scope would still pick up damage to the villi? Or is that far to long ? Cheers,
  13. beebs
    Yes - I have heard the above. I was questioning my Dr wether I should a challenge or not. She thinks not but I kept harping on about it. I just said to her that I wouldn't want to risk intersussception again and she said that it may not happen if I got glutentend again now because my intestines would have healed in the 7 months gluten-free.....that may be...
  14. beebs
    Does lipstick have gluten in it? I had no idea!
  15. beebs
    Sounds like Angular cheilitis, I used to get them all the time - so stingy. They absolutely can be a sign of celiac and can happen due to deficiencies like anemia, B2 and Zinc.
  16. beebs
    Sydneysiders. I have found another safe restaurant for us. My other Coeliac friend took me there on friday - they are just lovely, great service, really helpful and they have a large choice of gluten free - but of course don't forget to mention that you are gluten-free:) Its called Tulsi and its Indian - really special though - not like all the Indian...
  17. beebs
    I used to get them all the time, in my nose too - sooo painful!
  18. beebs
    I agree about getting tested first. I did what you want to do, went gluten free with full intentions of doing a challenge and getting tested at a later date. I have eaten gluten once since then and ended up in hospital. I actually can never eat gluten ever again so I doubt I will ever get a proper diagnosis. Not saying you really need one - but it is rather...
  19. beebs
    Yeah re country life...it smells like the ocean when you toast it...ugh Although I have heard they are changing their recipe - so fingers crossed. I will try it. Its so hard making bread all of the time...
  20. beebs
    I was told by a Dr 3 years ago that I was negative for the celiac genes and my celiac blood panel was negative therefore I couldn't be celiac. I have progressively gotten worse and worse and as some people on this site know I have had Intersusseption 4 times - its considered life threatening and it happened the last time I ate gluten after being gluten free...
  21. beebs
    Have you heard of others? I haven't but I know they are out there because there have been studies done...It makes it scary to be honest. I am going out to dinner tonight and I am starting to feel nervous about it already....the whole accidental glutening thing..ugh!
  22. beebs
    I dunno what its like where you are, but here in Australia our Coeliac society say that Oats cannot be guaranteed gluten free and to not eat them ever. Its to do with the growing and storing of oats and wheat together etc. I would get rid of the oats - its amazing how quickly people adjust to rolled rice porridge. Or lately I have been making a rice breakfast...
  23. beebs
    yeah same - just waiting on my connective tissue disease results to see if they actually show up anything this time ...this autoimmune stuff is sooo horrid - I hate it
  24. beebs
    I have found two new snack bars that are gluten-free in woolies the other day. THey are divine - and neither have any sugar added. One is the new Go Natural "soft Eating" bars - the choc, almond and raspberry one is gorgeous and the other are Emma & Tom's raw fruit n nut bars, the cacao and orange one is yummoooo!
  25. beebs
    Thanks so much for the review. I'm always looking for good places in Sydney:)
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