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beebs

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Everything posted by beebs

  1. beebs
    The worst part is - my GI even though he is the one who knows I get intersussception wants me to do a gluten challenge - he isn't a celiac specialist type person... I'm not going to do it though. I think he wants to do it as a kind of study or something???? My GP is like "Just don't do it - it isn't worth it!" I haven't been officially diagnosed you...
  2. beebs
    If I eat a tiny bit of gluten - I get stomach acid that bubbles up in my throat and I can't swallow, then this kind of mucus thing where it just comes up and won't stop for hours. Its foul - and I have had it in cafes and stuff - so embarrassing. If I eat lots of gluten (which I will never ever do ever again) I get intersussception. They explain it like...
  3. beebs
    I have a feeling he may have meant to do it - forgot to ask for it and then though that I probably didn't have it anyway so said it was negative?? I have a rheumatologist - have done for 5 years - negative bloods but deffo connective tissue type stuff going on - it is never simple with me -boo
  4. beebs
    The plot thickens - I asked my old GP for my genes tests that he preformed years ago and it comes to light that he didn't test me - he told me he did. He told me specifically that I was negative for the genes (separately from the coeliac blood panel that he also showed me at the same time) so that I couldn't be celiac. And every specialist since has believed...
  5. beebs
    pomegranate Cafe King Street Newtown and Cafe 2042 also on King street are both good. Pizza Picasso are great in terms of labelling (there are only 2 ingredients we can't eat assuming you get the gluten-free bas that is!) And Chedhi Thai on King Street has a separate gluten free menu. There is quite a bit Newtown way as you can see!
  6. beebs
    The house became gluten free when I and two of my children went gluten free. My husband and other child just had to suck it up - so to speak. Why can't he just enjoy gluten when away from the house? There is just too much risk for cross contamination for my liking...
  7. beebs
    Have you talked to your Dr about your pain? It sounds much like mine - comes in waves...it feels colicky, I've been in labour and my pain is almost (but not quite) as bad. And its like having contractions lasts 2-3 hours- anyway - my GI thinks its transient intussusception - and yes - it can be caused celiac, there have been a few studies done about it, but...
  8. beebs
    Haha - yes - good point IrishHeart!! I've been gluten free for too long now for testing - the only way to test would be to do a gluten challenge and that could kill me so I guess I'll never really know- although of course I strongly suspect with my family history etcc. Thanks for the replies everyone!
  9. beebs
    I don't live in the US so don't have the insurance thing - but I think my Dr wants me to do a gluten challenge because he is a bit of a gluten denier..he probably isn't the best specialist for me to have - he had my mother convinced that she had bowel cancer and she went for an endo/colo and on the day the Dr doing the tests took some biopsies for Celiac...
  10. beebs
    I had extremely severe GERD for years...really bad and was medicated but still eating a packet of tums a day and still getting it all the time. It felt like a heart attack and caused Jaw pain. Anyhow - when I went Gluten free my GERD was gone within a day. No kidding. I have to have an endo to check for damage to the Esophagus, but it is amazing the difference...
  11. beebs
    I am still on my never ending quest to find out what is wrong with me. I know I react badly to gluten and I am pretty certain its celiac. I have been diagnosed severe gluten intolerance due to going gluten free before biopsy - A little background is; My mother is Celiac and my sons biopsy was borderline. I tested negative on the genes test and negative...
  12. beebs
    Thanks for your reply. Might just take him to the GP to get his bloods done - thanks! His specialist can take up to 10 days to call back! Yeah -he has those nice chewy vitamin tablets that taste like lollies. He has come off a 3 month course of ferro liquid about 3 months ago and here we are again. If we pack him full of iron then he seems ok - but...
  13. beebs
    HI guys, I just have a few question about your kids and Anaemia. I am pretty sure that my 4 year old is becoming anaemic again. The Paed GI (who is a celiac specialist) still doesn't know what is wrong with him - if he is celiac he is testing negative on every test (his younger brother just came up borderline on his endo). Crohn's has been mentioned....
  14. beebs
    I am a number and figures girl too. I came back negative on the genes test, and was supposed to have an endoscopy but was put off due to pregnancy. I went gluten free because it can be dangerous in pregnancy and thought I'd do a gluten challenge after and then get the biopsy.Anyhow last weekend I ate gluten after being gluten free for 4 weeks and I got sooo...
  15. beebs
    I won't be doing a gluten challenge - I am too scared to eat gluten agian
  16. beebs
    I know I guess I just thought it might help my kids get a diag of something. I had my 18 month old results back today. Non diagnostic from a celiac point of view - but he does have increased lymphoplasmacytic lamina propria inflammation in the villi - which the Paed GI said can happen in Celiac before the Villi gets damaged? He also had GERD, Eosophagitis...
  17. beebs
    Yeah - there is absolutely a difference on the diet. I think I am just going to go gluten free and forget about the endo- gluten hurts too much! Thanks for your help!
  18. beebs
    Okay - I am in a big dilemma here. Because they do want to do an endo. It was put off because of my pregnancy - but by the time I give birth and am well enough I will have been gluten free for 6 months - thats long enough for a negative to show even if there was damage isn't it? There are a couple of reasons they want to do it - they think that my esophagus...
  19. beebs
    Oh yeah - I went straight to the hospital to make sure it wasn't pre term labour. They said whatever it was it was not that. Please don't take this the wrong way- but I am glad I am not the only one. This gluten stuff is so full on confusing and hard to diagnose. Drives me insane! Thanks for your replies.
  20. beebs
    I would be going to the hospital for that mate. rectal bleeding can be dangerous.
  21. beebs
    I am not diagnosed with anything at this point and I am 24 weeks pregnant and after talking to some of the wonderful people on this site I decided to go gluten free so that I didn't harm the baby. I have a history of connective tissue disorder (not sure which one)GORD, I have dramatic weight loss, my mother is Celiac my grandfather was diagnosed with bowel...
  22. beebs
    Thanks for your reply ravenwoodglass! He's been gluten free for 3 weeks and has put on .4kg, He had not put on any weight before that for over a year. I noticed in a previous thread that your DD had gastritis as her primary symptom of celiac. Wow! I had no idea that could be the case - but could explain why DS has gastritis with no bugs present and...
  23. beebs
    I am shocked - I have to say, the thought that my 4 year old could ever have anything else has not crossed my mind. My mother is celiac, I have problems with Gluten and am awaiting a biopsy. We received his biopsy results today and I am flummoxed - I have no idea what is going on and neither does his Paed GI. Anyone any good at medical speak? ...
  24. beebs
    Hmm - now that you point it out...I rang the the other day to ask them a question about the gluten challenge for a baby. They didn't know. Then they said he should have the genes test because if he didn't have the two common genes then he could be ruled out as having coeliac. Even I know that isn't true!
  25. beebs
    Honestly, we had a Paed who told me there was nothing "wrong" with my son who was 3 at the time and that he had "toddler diarrhea". He became so severely aneamic he developed a heart murmur - it was a very scary time, he could not stand up, he could not eat, he just lay crying on the couch for months, it was awful to watch. So basically we started seeing...
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