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javic

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Everything posted by javic

  1. javic
    For those who suffer from mood or behavioural effects after eating gluten, how long after eating gluten does your mood start to change? Also, what kind of mood symptoms are they and how long do they last? My son is coeliac and has only mood/behavioural symptoms and I'm curious how it affects others with similar symptoms.
  2. javic
    My son is 4 and just had a gastroscopy to test for celiac and we haven't got the results back yet so he is still eating gluten as always. In the past couple of months, he started up with some really difficult behaviour. He screams and growls and will hit or pinch or scratch. He makes unprovoked attacks on his little sister. We noticed that when he was not...
  3. javic
    Cave mum, i see you got a diagnosis for your son. I wonder why the first biopsy didn't show damage. My son had his gastroscopy on the 10th. They said they did not see definite celiac and would have to wait for the biopsy results. He had some bleeding at the biopsy sites and had to stay in for another 6 hours afterwards, was not allowed to eat until 1pm...
  4. javic
    Thanks for your thoughts. It convinced me to get her tested so we went today. She was very upset but it was over in a minute or two and we'll get a better idea now. Very glad to have done it.
  5. javic
    By the way, Merry Christmas all!
  6. javic
    My daughter has just turned two this month. Her brother has just been diagnosed with celiac so we got a gene test for my daughter (via cheek swab) and turned out she is homozygous for the dq2 gene (has two of the celiac gene). Now that I am aware of it, I've realised she may have some symptoms of celiac. Around 5 months of age she started waking in...
  7. javic
    My 4 yr old son had elevated gluten antibodies in his blood and in scheduled for an endoscopy/biopsy on the 10th of Jan. I decided to get my daughter tested for the gene (via cheek swab aka buccal smear). They found that she has 2 of the DQ2 gene which, according to the internet, means she has 1/3 chance of developing celiac. We plan to go gluten...
  8. javic
    I'm interested in finding a resort that is completely gluten free. I heard about one on the radio but when I did a search on Google I could not find anything. Does anyone know of any gluten free resorts anywhere in the world? Or have any idea of a travel agent or other place that might be able to help me find one? Thanks!
  9. javic
    How are the stomach aches going now? Have you had your antibody levels tested again since diagnosis? Have they gone down? I was reading something about refractory celiac disease - I believe this means that the symptoms will not go away even on a gfd. Very rare mind you. More likely to be additional intolerance. Have you worked it out yet?
  10. javic
    Christine, thanks so much for your reply. The point about the treatment options really made sense. I emailed a man involved in the research for development of the celiac vaccine and he was so wonderful replying to me in great detail and offering further help. He brought up the point about the treatment options only being available to diagnosed celiacs. He...
  11. javic
    I spoke to the gastroenterologist today and she convinced me to go ahead with it. She mentioned that, if the tests were misleading then there could be something else going on other than celiac and that if the endoscopy ruled out celiac then we'd know to look elsewhere for the issue. Also, true enough, if we did not have a 100% confirmed diagnosis then we...
  12. javic
    No one in my family is diagnosed but my mum has been off gluten for 15 years - self diagnosed because the doctors were useless in helping her. No gluten-free trial done yet as we only just got blood tests and were told to keep him on gluten for the endo. The results were: AGA IgG >100 (positive > 30) T-glutaminase 9 (positive > 8) I don...
  13. javic
    My 4 yr old son had high positive antibodies in his blood test. The gastroenterologist wants to do the endoscopy. They sent me out info and, of course, it mentioned "risk of death". I'm so scared! I just can't imagine putting my son through it. And what does it really achieve?! Surely, there are other ways to test for celiac? And if he has issues with gluten...
  14. javic
    Sorry, I should have made it clear. My son has tested positive for celiac on a blood test a couple of weeks ago. We have not had an endoscopy yet. I noticed my sons behaviour change quite dramatically when he was two. He slowed down a lot. Went from running everywhere to walking and then, over time, wanting to be carried. And then recently I noticed his...
  15. javic
    My son was really advanced with gross motor skills when he was tiny. He walked at 9 months. Just before he turned 4 they tested his gross motor skills and he was behind. Could not stand on one leg or do tandem step. Also, I noticed he can no longer catch a football - this was something he was able to do a year ago, but now he has real trouble with it. Could...
  16. javic
    My son had a high positive blood test for celiac. We went to a gastroenterologist on Thursday who said we need to do the endoscopy and biopsy. The only date she had available this year is when we will be overseas. It will take another 6 weeks for her to have a free spot. He does not have any pain, diarrhea, vomiting or rash from gluten. He barely has...
  17. javic
    Are there any more folks with stories like these? My son is 4yo and has just had a positive blood test com so hoping his grumpiness and aggressiveness will vanish.
  18. javic
    Thanks very much Nicole. The Dr did do tests for many vitamins. His folate and b12 were over the normal range. Vitamin d was one point below normal. Everything else was in the very normal range. I do want to go gluten free ASAP but now managed to get an appointment to see a pediatric gastroenterologist next thursday. So I wonder if we should wait until...
  19. javic
    Okay so the test results showed really high AGA IgG. It was >100 and positive range was >30. The T-glutaminase was 9 and positive is >8. I was given a referral to a gastroenterologist but when I called they said she is not taking new patients. Options, I think, are gene test or endoscopy/biopsy. But not sure why we need to bother with that...
  20. javic
    Just called the doctor's office again to try to get the results but don't think the receptionist was able to give them out. She changed our appointment until tomorrow instead so hopefully will know soon. One more question though - my son can be quite obsessed with eating bready type products. Is this common with celiac? I figured it was quite normal for...
  21. javic
    My son recently had a blood test for celiac and today I called the Dr's surgery to see if results were in. The receptionist informed me that the test for celiac was "slightly abnormal" and made a non-urgent appointment for us with the doctor next Monday. I am now really wanting to know what this means - I don't want to wait until monday to work out what...
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