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Niks

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Everything posted by Niks

  1. Niks
    Hello there I don't want to scare you, but have you had him tested for these symptoms? This does not sound Celiac related, but more like Autism. I really hope you can get some tests for your boy and get him some help. Good luck! xxxx
  2. Niks
    GFinDC - Thank you! The problem is Jaime has no diagnosis of Crohn's! They can't 'rule it out' but haven't seen any active crohn's on any scopes. There are a meters of small intestine that can't be seen on scopes so it is extrememly frustrating! She has previously been on fortisip compact when she hasn't been tolerating solids but as she stands right...
  3. Niks
    She has been dreadful. Admitted for fluids and IV antisickness 3 times over last 2 weeks. Also once for kidney stones!! She's never had kidney stones before!! She also has a UTI poor thing. She's losing weight rapidly and not keeping any solid food down. Luckily at the moment she is keeping clear fluids down, but this is hit and miss! Next GI appointment...
  4. Niks
    Thank you GFinDC They got to terminal ileum, but couldn't see any problems! They did say they'd do a pillcam next, I really hope they do as I am convinced her problems are in her small bowel! xx
  5. Niks
    Thanks Mommida! Good advice xx
  6. Niks
    Just a quick update. J has had a really tough month. She is really struggling walking any distance and on one occasion we had to even hire a wheelchair as her pain levels were just so bad she couldn't straighten up and walking was impossible. Her GP has given her morphine patches, which has taken the edge off, but still really struggling. Last Tuesday...
  7. Niks
    Thank you! I have just looked this up and I am not sure if she has ever been tested for this. It is something I will check next week with GI.
  8. Niks
    Got hold of GI today. He wants her to stop Iron Supplements and is getting her to have an Iron Infusion instead, he is worried that it will make constipation worse, although that isn't a problem at the moment! He wants full bloods done and possible Sigmoidoscopy, he has made an appointment for her next Tuesday at Gastro Clinic, so will discuss again...
  9. Niks
    Thanks again GFinDC. Her GP has prescribed Prednisolone again and the bleeding is much worse and she is fainting pretty much everytime she has a BM. GRRRR. We can't get hold of hospital so she really doesn't know whether or not to start steroids.
  10. Niks
    GFinDC - Thank you for all your input here. My concern is that she has more than coeliac disease and things just seem to be getting worse for her. I am a member of crohnsforum.com ! And yes they are amazing people with lots of experience and ideas. I came here because I was thinking there maybe something we were missing with the Coeliac Disease. When...
  11. Niks
    Always Learning, thank you for this. She did have B12 jabs back in March. This must have boosted levels, so my guess is that they are dropping again. I think we need to talk to GI about this and see what he thinks. She had really bad symptoms when it was really low and is not showing any of them yet!
  12. Niks
    Thank you all for your advice and thoughts. . Her thyroidTSH is normal 1.0 (0.35 - 6.9 normal) Ferritin only 12 (30-300 normal) B12 normal 262 I have googled and researched a lot and I really don't think that just a low ferritin level would cause the fainting? She has iron supplements, will get her to take them with Orange Juice (thanks Becca...
  13. Niks
    I remember one stool test, but not sure what that was testing for in hospital, this was way back x
  14. Niks
    Thank you Becca. She generally doesn't eat processed food. Her GP called her this morning, she has low ferritin levels, he is going to prescribe some iron. I guess that could something to do with her constant tiredness and fainting!
  15. Niks
    She was fine absolutely no problems Stanleymonkey! It all started at 15 years. Really hope you have a good GI to investigate for you. We haven't had the best day. She woke up around 4am in agony. By 10am even worse. GP sent her to A&E. Obs and blood tests all fine. (Still haven't had tyroid and B12 back as taken at our local hospital!!) ...
  16. Niks
    Thanks Stanleymonkey. This is my gut instinct. Crohn's makes more sense to me! AlwaysLearning - Thank you for all this too! I am keen to see what is going on with her B12 and her Thyroid levels. I am wondering if she should add B12 supplements. Thank you everyone for your advice!
  17. Niks
    Thank you! I think as she is bleeding and still fainting she needs to at least try! Now to convince her! Her new medication is actually getting her bowels moving which is better and has decreased the amount of time she is vomiting. My take on it is, if her bowels aren't moving things through then it has to come out somewhere, hence her persistent...
  18. Niks
    Turningleaf - thank you! Her B12 was 67 earlier in the year. I hope it hasn't dropped so much again! Jepacar - If it was me, I think I would too. Unfortunately because the gluten free diet has done nothing for her symptoms, she is not wanting to even try dairy free .. Her GI has pretty much told her it wouldn't be dairy or any other food intolerance...
  19. Niks
    J is 19. We live in the UK. She started with abdo pains and initially at 15 was sent down the gynae route! Nothing was ever found At that time after having her appendix out (was fine), endometriosis ruled out. Bowel looked inflamed on laparoscopy. Bowels at that time were not causing her a problem. First signs of any problems last June was rectal...
  20. Niks
    Thanks mommy2krj. Basically they are saying they don't know! Initially steroids worked, so possibly Inflammatory Bowel Disease. In March though her MRE scan was clear. She had however been on steroids for 6 months on and off. My gut instinct is that it isn't just coeliacs. Her diagnosis right now (which changes with the wind)! is Coeliacs Disease...
  21. Niks
    Thank you Mindwarp We are pretty sure there's no cross contamination. We have nothing at all with wheat or gluten in at home and her last biopsy in March, after 3 months completely gluten free was clear. Yet her symptoms worse than ever. Would dairy intolerance cause rectal bleeding? It is all very confusing. I was so relieved with Coeliac diagnosis...
  22. Niks
    I guess I have posted this in the wrong place if 400 people have viewed and still no replies? Could someone please help me out here? Where should I post? Thank you
  23. Niks
    Hi My daughter was diagnosed in December with Coeliacs Disease. Prior to this,(June - October 2012) her symptoms were severe abdo pain, Bloody, mucoussy loose stools, 28 lb weight loss. Persistent vomiting. Initially they thought Crohn's disease, so put her on steroids, which did calm down all symptoms. She had CT Scan, which showed some thickening...
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