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cristiana

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Everything posted by cristiana

  1. cristiana
    Hi Marina I've had some very odd neck issues and when I had an MRI once, even to my non-medically trained eyes, I could see my neck was in a right mess! Vertebrae all over the place. My consultant seemed to think that was whiplash related - perhaps so. But now you mention it, long before the whiplash injuries (I've been rear shunted by vehicles twice...
  2. cristiana
    I agree, Trents. And it isn't for want of publicity. One of my relatives is a doctor and he has had lots of information about it sent to him, I guess the problem is doctors have so much else to read and to do. However, I think once a doctor has seen such a case first hand it can make a difference. My own GP never thought of coeliac disease when I...
  3. cristiana
    Hi Marina Oddly enough, I had a similar situation in that my GI issues didn't start for a while after my neurological issues manifested, which were migraines, tingling extremities, numb arms on waking and seeing odd things on waking. I got diarrhea eventually though and that's what led to the tests which led to my diagnosis. It is frustrating as my...
  4. cristiana
    Thanks so much for sending this link, Russ, that's very helpful.
  5. cristiana
    Hello Russ Welcome to the forum. It certainly sounds as if coeliac disease is a real possibility. Over time I've had all but no. 8 of the symptoms you mention. When you say you have not been offered a helpful diagnosis, have you been offered any tests whatsoever? Cristiana
  6. cristiana
    Hi Marina You may wish to check with your doctor but when I was officially diagnosed coeliac in the UK back in 2013 I was told that an official diagnosis would allow me access to a nutritionalist on the NHS as well as regular check-ups (incl. an annual blood test) to check my coeliac numbers, liver function etc, again on the NHS. I don't think I would...
  7. cristiana
    I had to give up milk for a while when I was first diagnosed. I am now able to tolerate it in moderate amounts. While I was healing I was told to try lactose free which of course is cows milk but it didn't help. I couldn't find anything with a similar taste but I tried various replacements and found that I liked almond milk the best, particularly with...
  8. cristiana
    Hi Josh I think quite few of us can relate to that happening - it's SO frustrating being told something, only for the doctor/consultant to be called off somewhere and one is left with a head full of unanswered questions! Trents is absolutely right - not everyone has positive blood tests. I am glad you have a follow-up in ten days' time....
  9. cristiana
    Hi NLR That's really interesting, that sounds so much like the pain I get. And my coeliac friend, similar age, told me she has been having that random sensitivity too. For me, it isn't really that "Ouch, I've eating something cold" like they show in the Sensodyne ads here in the UK. It's a pain that sometimes can be triggered caused by biting onto...
  10. cristiana
    Thanks knitty kitty. I had to go back to see the dentist and it seems it's TMD/TMJ - depending on your nationality. Very odd as I could have absolutely sworn it was my teeth. It felt like appalling dental pain but the weird thing is it was moving around my mouth. He says I have got sensitive teeth already but the jaw issue is just adding to it. ...
  11. cristiana
    Hello everyone I wonder if anyone has had experience of bouts of tooth or gum pain which they think may be related to coeliac disease? I have heard coeliac disease can impact upon our dental health but I'm wondering if actually it is a nerve problem that I have rather than dental. I do have mild neuralgia on the right side of my face which is...
  12. cristiana
    Yes... that 44% rings a bell. But whatever - it definitely worth getting tested. My poor mother had a bad time with her health in later years and she never got tested.
  13. cristiana
    Hi GFinDC That is a very good point. Not meaning to hijack this thread, but do you know what the latest is on chances that a first degree relative has it? When I was diagnosed back in 2013, I was told 1 in 10, but I'm not sure if that still stands? Cristiana
  14. cristiana
    Hi Renee Welcome to the forum! Unfortunately this isn't all that uncommon. There is a lot of ignorance surrounding this condition. I have people in my own circle that have said, in the past, some ridiculously insensitive or ignorant things. However, I've noticed over time they have stopped - partly because I've tried explaining things very sensitively...
  15. cristiana
    Hi there, I agree with everything trents has posted. One other thing - do you if his haemaglobin levels are high? I suffered from phlebitis in my left leg in my teens, most unusual for a teenager apparently, and I was told I had sticky blood. Since then I've had blood tests that reveal just beyond high normal readings for haemaglobin, which most...
  16. cristiana
    Hello glutendasher I'm not very scientific or good at explaining things but does this link help? https://nationalceliac.org/celiac-disease-questions/i-just-had-a-blood-test-and-my-igg-is-6-it-says-weak-positive-what-does-that-mean-to-me/#:~:text=A person with celiac disease,reason is typically gluten exposure. From my own experience, I can...
  17. cristiana
    Don't exceed the dose recommended on the packet, but I understand it is best to introduce it gently so your system gets used to it (and you might not need to take the maximum dose to get the required effect) I generally only take a half dose before it kicks in, and stick at a half dose, but we're all different. I'm not a doctor BTW so this isn't medical...
  18. cristiana
    Hi there, I remember that Coeliac UK used to list gluten free sweets in their printed Food and Drink Guide but unless I'm missing something, those listings no longer appear, although they do list supermarket own products. Of course they may be trying to discourage us coeliacs from eating sweets for dental health/waistline reasons (!) but I have...
  19. cristiana
    Hope, I'm no expert on magnesium but I always make sure I have some in the house. If I get a bit constipated I find just one-two tablets gets things back to normal again, but it's important to drink plenty of water. The other thing is for many years I've suffered from occasional spates of twitches under my eyes, which I find very distracting, and sometimes...
  20. cristiana
    Hi Sophie I'm so glad you've had good such good experiences in the UK of eating out. That is really encouraging to know. Things are certainly improving in the UK, particularly since the very sad case you mentioned - I remember it being in all the papers. I was diagnosed in 2013 and since then I have been glutened three or four times in restaurants...
  21. cristiana
    Here in the UK we are witnessing what we hope will be signs of herd immunity beginning to take effect, thanks to the vaccination programme which has now reached nearly 50 per cent of the population. Of course, figures are improving too because we've been in a lockdown since January. The concern is new variants could undo some of the good work. But I'm so...
  22. cristiana
    Hi Danni Welcome to the forum! I continued to lose weight for a while when I was first diagnosed, from memory, and I actually thought I'd never put it back on. However, now my gut has healed it's back again, perhaps with a bit more! When you say you are newly diagnosed, how long ago was it? And what tests did they offer - was it just blood...
  23. cristiana
    Moni I used a UK accredited counsellor using this site directory. She was excellent. Having a safe place to talk is so important. I knew I was getting better when I got bored with going!😊 https://www.bacp.co.uk/search/Therapists C.
  24. cristiana
    Hi Moni Iron deficiency causes all manner of issues. Make sure your GP/consultant monitors this because once you are supplementing you want to make sure your levels aren't getting too high. I have a review every time I see my consultant (about 9-12 months). Paul David has a website which you can have a look at. I remember doing so while I was...
  25. cristiana
    Hi Moni Firstly, welcome to the forum, but I'm so sorry you are going through the mill at the moment. Severe anxiety was definitely one of the symptoms I experienced and this isn't uncommon. It was absolutely awful - I really do sympathise. But I can tell you that it was temporary and gradually subsided. There may be some things you can...
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