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nikki-uk

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Everything posted by nikki-uk

  1. nikki-uk
    Hi Sharon-the ttg is specific to coeliac disease,and you should have had it with the other tests.Without the ttg,your levels of iGg/igA would not really mean much(other than high levels would mean all is not well in your body). However for your son,just testing his tTg levels is a normal way in diagnosed coeliac to see if his antibodies to gluten are...
  2. nikki-uk

    ARCHIVED Toastabags

    nikki-uk replied to a topic in Introduce Yourself / Share Stuff

    Yes, they are brilliant!Have used mine numerous of times.What I like is that you can do a toasted cheese sarnie-which tastes suprisingly good.Invaluble if your going on hols,although I don't think they were designed to stop cross contamination for celiac disease'ers,but they do the job.Washable too!
  3. nikki-uk
    Whitelace girl-why didn't your doc put you on a gluten-free diet if he could tell from the 'scope?Did he take biopsies? Negative bloods do not mean you haven't got coeliac. My husband had negative bloods,but biopsies showed extensive'villous atrophy'. My son used to have thrush in the mouth,-and docs gave him'nystatin'(don't know if you have a different...
  4. nikki-uk
    I know what you mean!I'm a celiac spotter too! But on a serious note,I'm in a similar position to you. My husband was dx with celiac disease 9 months ago.One of my son's has had borderline blood results(constant bowel symptoms),more tests being done.I've put my youngest on a gluten-free diet to see if it will help with dyslexia/behavioural problems(doc...
  5. nikki-uk
    My husband's ttg was 12 which was classed at borderline(biopsy positve though) My son's recent results are7 which again are classed as borderline-but docs are now checking his ferratin levels looking for more signs. The number scored therefore can vary enormously.Would your Dad consider doing a trial gluten-free period to see if he has a positive response...
  6. nikki-uk
    Yes!Before going gluten-free my hubbie used to get them terrible! He would have to get up and change his t-shirt and put a towel on the mattress to lay on.Since going gluten-free it's only happened a couple of times,nowhere near as bad though.
  7. nikki-uk
    My husband used to suffer from bleeding before diagnosis of celiac disease.We now think it was made worse by the 'nsaids' (non-steriodal anti inflammatories)he was taking for rheumatoid arthritis.Avoids them now. There are people out there with chron's and coeliac disease.Once you got one auto-immune disease,your more likely to develop another .Chron's...
  8. nikki-uk
    I sympathise with you,my husband was dx 8 months ago.Previous to this my husband had NEVER thought about what he was eating.He's always been skinny(probably due to undiagnosed celiac disease) and so ate what he wanted. Whereas, I think women tend to put more thought into what they eat,and what they serve their kids,trying to acheive a healthy balanced diet...
  9. nikki-uk
    Thanks for the tip celiac3270,I'm in the uk-shall rush out and buy a knife!
  10. nikki-uk
    This is a site in uk but loads of info-hope it helps www.crohnszone.co.uk
  11. nikki-uk
    I think it would affect a blood test and biopsy as steroids dampen down the 'immune response'. I would ask a medic though-just to be sure
  12. nikki-uk
    I must admit,when my husband finally found out what was wrong,he had very high hopes for the gluten-free diet,especially as he has been ill for many years.It's taking a little longer than we hoped as he's had to go on steroids to aid recovery-but it's in the right direction. My husbands family do not understand the concept of a gluten-free diet-for instance...
  13. nikki-uk
    This is a problem here in the uk as well unfortunately.So disheartening,hospital should be the one place where you should get 'safe' food.Still,you now know what to do if you ever go into hosp again(take your own supplies)
  14. nikki-uk
    It's hard going isn't it, to finally find out why you feel so bad-but to not feel any better with the 'cure'(gluten-free diet). I think I also understand what you mean by all of this is affecting your 'mental attitude'. My husband has been gravely ill with this disease,and he does get very down about it.Since diagnosis in the last 8 months he has been mostly...
  15. nikki-uk
    HI nailehead, my husband has been put on steroids but not primarily to put on weight. My husband has 'refractory' coeliac disease (meaning it's not getting better on a gluten free diet). The steroids are prescribed to dampen down the immune system,by dampening down the immune response,this allows the bowel to heal(hopefully). Of course...
  16. nikki-uk
    My husband had all of your symptoms,in particular the difficulty swallowing/sore throat,and swelling/water retention in his feet & legs,extreme fatigue. Hopefully,keep at it.It's probably gonna take more than a week to start undoing some of that damage. I know once you get your diagnosis-and get your head round a gluten freediet it can be disappointing...
  17. nikki-uk
    Thanks Ally. I can't tell you how frustrating it's been!.You just have to get on with it though.Whilst on steriods all of my hubbie's symptoms have quietened down,but I don't know if the neuro symptoms will return.Suppose we'll have to wait until we've seen the neurologist. -Will keep you all posted on his progress-cases like his seem so rare. Hope things...
  18. nikki-uk
    Hi Ally, to describe my husbands neurological symptoms,they are; Numbness,pain,tingling,burning pain in feet and legs. Soles of feet hurt to stand on Extreme difficultly getting to standing from chair(although he wants to get up nothing happens,takes about 5 mins) Spatial awareness problems(bumping into things-like he's drunk...
  19. nikki-uk
    Stage three I believe(partial villous atrophy). If you could have seen how ill he was,you'd be suprised he had any villi left! He also unfortunately has neurolgical symptoms,(waiting to see neurologist)
  20. nikki-uk
    My hubbie is 2weeks into a months course of steriods.He see's his gastro doc after a month,by which time he will be down to 10mg. I suppose the docs will assess how much weight he's put on,as to whether he can come off them. Just to see him want to eat is fantastic,(I think after years of pain he unconsciously avoided food).Trying to cram as much in as...
  21. nikki-uk
    Some of the lucky guys start to feel better after 2 weeks gluten-free-but for alot it takes a longer. I do sympathise with you as my husband has had a similar problem. After finding out what was making him feel so bad,we all imagined that he would start to feel better after a couple weeks gluten-free. We suspect that my husband has had celiac disease undiagnosed...
  22. nikki-uk
    My husbands movements were like that of a 90 yr old(he's forty!) Tingling ,numbness and pain (like burning)in legs and feet.Terrible headaches that lasted for days.As the day wore on I can only describe him as' freezing up'. He also had trouble with balance and dizzyness. I am using the 'past tense' as hubbie is now on steriods(no response to 8 months...
  23. nikki-uk
    If you have had a biopsy done,and it shows 'villous atrophy', the labs categorise what level of damage,stages 1-4 I think. Doctors however do not usually tell us 'mere mortals' what stage it's at. My husband was told he had 'partial villous atrophy',but I have no idea what 'stage' the damage was.Maybe at the next appiontment we will ask!
  24. nikki-uk
    Hi HannahCal, Sorry to here you're having a rough time. If you have an Iga deficiency you could get a false negative on blood screens for celiac disease. Regarding your biopsy,are you saying that they found no 'villous atrophy'? If this is the case it could be that there is no damage yet,or,sometimes the place where they took the biopsy from...
  25. nikki-uk
    Hi, my husband had negative blood results,but 'positive' biopsy showing villous atrophy. I'm not sure I understand why,and it makes my husband think the docs have got it wrong-especially as he's seen no improvement in health on the gluten-free diet. It's all so confusing!...
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