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brigitam

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Everything posted by brigitam

  1. my son came back negative on all tests. all my doctors (and we have seen LOTS) has said he is not celiac and most don't believe in gluten intolerance. he has been gluten free for almost 2 years and i still doubt myself without the diagnosis. he is not growing (still under 1st percentile) and has frequent tummy problems- because of accidentally having gluten...
  2. my kids favourite is chicken noodle soup- don't need to add chicken. veggies, flat rice noodles, chicken stock (or veggie stock), sesame oil, oyster sauce, tamari and a bit of sugar.
  3. Before discovering my son was celiac i was told he was small due to a "too healthy diet", which is rubbish because he eats all sorts of foods. He has been gluten free for a year and is smaller than my 4 year old even though he is also 6. I have tried a high fat diet, but found it is really easy to get into bad eating habits. I found myself giving him extra...
  4. This site has great info but I don't know if it is the same in America as it is here in Australia. I would assume it is. Good luck. Brigit Open Original Shared Link
  5. Thanks so much, some great advice. A lot of things that I hadn't thought of like soap and crumbs around the house. I am going to have to give my house a serious overhaul and hope that solves the problem. I have thought of other food intolerances but it really feels like gluten free is enough of a burden for a 5 year old. I hope that is something that I don...
  6. Hi, I need some help. My son aged 5 has been through lots of testing and I have been told he is NOT celiac- despite having dozens of symptoms. I suspect he had his endoscopy test too soon after being back on gluten- hence a false negative- but who knows?! He has been gluten free for about 8 months and up until now going great- growing, fattening up, increased...
  7. Hi all, I just thought I'd post an update for anyone who is interested or in a similar situation and searching for answers.. not that I really have any but... My now 5 year old is very small for his age and has failed to thrive since starting solids. He was born small and had reflux when breastfeeding. He had continual diarrhoea. At 4 it became clear he...
  8. Would you keep her gluten free for a few years and consider testing it when she is old enough to talk about it properly? I am just going through the testing with my son now who is 4. A lot of advice on this forum says trust your instincts and don't worry about the actual diagnosis- especially considering it is difficult to diagnose. I myself wanted to do...
  9. Thank you mushroom and dixiebell for your wise words. It is silly that I have felt the need for doctors conformation on this. We chose to get the endoscopy done incase other things were found and I guess to rule out any doubt that it was celiac. Now we still have doubt and it feels so cruel that we put my son through it. Boxes make things feel clear and easy...
  10. Ok now I am really confused. We had our endoscopy yesterday.. and the doctor said it all looked good. We still have to wait for the lab results but with negative blood work, it seems pretty clear he is not Celiac. So now I have a 4 1/2 year old who is smaller in height and weight than his 3 year old sister. And you can say size doesn't matter but when you...
  11. I have pushed our endoscopy to next week by going through the private system. I didn't want to risk him on a gluten diet for 6 weeks longer than needed no matter the costs. I figure that if the results come back positive it will be money very well spent. He has been on gluten his whole life, and had 2 weeks off a month ago. At the time of the endoscopy...
  12. I did know that they can't legally refuse but it wasn't worth arguing over. The specialist looked through the tests today and he is vitamin d deficient, but other than that all is okay...he is just very small and thin. Regardless he is doing a biopsy in 6 weeks though I was told there is only 5% chance he is Celiac with negative blood results. I don't know...
  13. Thanks Debbie, I haven't got a copy of the blood tests, my ped wouldn't hand them over but I will have the specialist look at them for me on tuesday. My son has been back on gluten for 2 weeks now. His behaviour has been terrible, he is wetting the bed every night (wasn't at all gluten-free), he has had night terrors, he is not eating, has diarrhea, and has...
  14. Thanks for the response. His behaviour over the past few days has been atrocious and I am starting to remember how manic he was as a toddler and how we used to laugh and say he looked like a starving ethiopian and all sorts of other things that make it all just fit. At a birthday party the other day I noticed my friends son who is not yet two was his height...
  15. Thanks for giving the time to respond and give me such great advice. I cried when the doctor said he wasn't celiac because it all seemed to fit so well and my son seemed so much better for it. I will try him on the diet again for at least 3 months and see how he goes... regardless of his diagnosis. I think I already know that he will be better for it and...
  16. Thanks for the reply. Is there another way he can be tested? And if so should I keep him on gluten until further testing or take him off gluten regardless of results or try wheat free? I'm really unsure because I don't want to have him be gluten free if it is not needed. I just read that reflux babies are often celiac too. Is this true because my son suffered...
  17. I am hoping someone may be able to offer me some help. My 4 1/2 year old son is extremely small and skinny for his age. He does not have the disproportionate large stomach that a lot of celiac children have. I have never thought he has had allergies despite constant stomach upsets of some kind or another and what the doctors called a failure to thrive. Recently...
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