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cristiana

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by cristiana

  1. cristiana
    Looking back, my first major symptom of celiac disease (apart from occasional D. which I just assumed was IBS or a nervous stomach) may have been mouth ulcers about eight years ago. They never tested my B vitamins then but I think it was probably down to a deficiency. I had another bout about two years ago. I took a vitamin supplement fizzy drink which...
  2. cristiana
    Hi notme! Did it take weeks or months?... for me, it hit two months after going gluten-free, that was July, and I still have it
  3. cristiana
    Thanks again pricklypear. Glad I'm not the only one - although sorry you are going through it, if you know what I mean. Just wondering, do you or does anyone else know if vertigo from gluten ataxia is a 24/7 feeling, rather than just lasting several hours every day? I am not talking about the type which hangs around for a few days or even weeks as a...
  4. cristiana
    Thanks for your reply, pricklypear That's interesting... do you get the spinning rooom vertigo .... or sort of swaying back and forth type, which is the type I get, along with feeling I'm on a ship's deck. Also, do you feel your gait is slightly affected?
  5. cristiana
    Hi Everyone I am now having tests for my ongoing feelings of being on board a ship. The ENT now thinks it isn't inner ear, so I just wondered, for any of you who actually have gluten ataxia, can you tell me, if you suffer from feelings of being imbalanced, vertigo issues etc, is it 24/7 or do certain actions set it off? In my own case, I don't wake...
  6. cristiana
    Hi Louise I was diagnosed by endoscopy and have been gluten-free for six months now. Initially I continued to get bloating, stomach pain and D. All that has pretty much gone now... in my own case the following brought around an improvement. I gave up dairy pretty soon after gluten as my stomach was still v. uncomfortable and continuing problems...
  7. cristiana
    Certainly, a great help. Thank you. It seems whichever way I look at it I am heading for some more tests! I should set up camp at the surgery. I have an unusual surname which I always had to spell when I rang the surgery, now no spelling necessary, in fact, I think they probably would recognize my voice without my needing to give a name! I think...
  8. cristiana
    Kamma, thanks again - all really helpful, thank you too for that detailed list. In answer to your question, I have had ringing ears since a child to a greater or lesser degree. I remember having flu when I was about eight, lying in bed and being frightened because in the silence the ringing was really loud - we lived in the countryside, v. quiet, no...
  9. cristiana
    Kamma - thank you so much for this info, including the list of trigger foods. It is good to find a fellow sufferer - but my commiserations to you for being a fellow sufferer, it is grim, you are right. The evening I googled the symptoms and came back with "rocking vertigo" my sister happened also to be on line and found some info on mal de debarquement...
  10. cristiana
    In the UK, Sainsburys and Waitrose are other good stores which you find in most towns which also have free-from aisles, the bigger the branch, the better the choice available.
  11. cristiana
    Hi dilettantesteph. Thanks so much for your swift reply. Glad to hear your migraines are so much better. I gave up gluten back in the spring, so about six months now, although strictly speaking there has been accidental glutening about once a month since then, the last one an accidental teaspoon of sauce about six weeks ago. On another post, someone...
  12. cristiana
    Like a lot of celiacs I have suffered from migraines in the past. From having bad painful headaches they then turned into the aura type, (without pain, hooray!) when I had my first child, and in more recent years I have the type that temporarily affect the peripheral vision with blind spots. Since going gluten free, I have developed a new symptom and...
  13. cristiana
    Hi JoyMurphy So much of what you say rings true to my own experience - this word problem, I too have that, some days worse than others, but it is embarrassing as I sometimes have to do public speaking and I wonder what the audience must be thinking! Or what inappropriate words I am using instead of the word I should be using! I had to actually ask an...
  14. cristiana
    JoyMurphy - thanks for these comments. I feel very much like you as you describe. I had the numbness and tingling, for me it was usually on waking, but in recent weeks that seems to be much better. I can't say I like the new feelings of being at sea, thought - esp. feeling of a downward surge running through me, my torso I would say, and head, just as...
  15. cristiana
    Re: iron. Maybe something to consider, if you haven't tried them already. I found most iron tablets actually hurt my stomach and upset it too, badly! So my doctor told me to try ferrous glucanate as she says some people find them gentler on the stomach. I was told to take two tablets first thing in the morning with a glass of water, an hour before eating...
  16. cristiana
    Hi Answerseeker I should say that my iron level was very low a year ago (7!) - they suspected the usual women's stuff. So I was put onto iron then. Finally they discovered it was celiac disease and it was at that point the gastro consultant said he'd like it to be higher than 20, which it was in the spring. I think it is v. wise to get levels checked...
  17. cristiana
    Thanks Pegleg - v. helpful. Answerseeker, just to say my ferritin level is about the same as yours but has gone up about 10 points since starting the gluten-free diet, and my consultant was pleased it was going up but he has asked me to keep taking ferrous glucanate for another six months so I guess he thought there was still room for improvement. I...
  18. cristiana
    Isn't it complicated! I just wish it was law to label everything with Gluten in it! EVERYTHING - lipstick, cough drops, chocolates, vitamins. Having to do all this detective work is very time consuming and let's face it, not everyone has the time to do it. I sent off for an ingredient list from a lipstick company and they came back with all their ingredients...
  19. cristiana
    I think it pays to be strict esp. with the scary neuro stuff. Interestingly I have two UK friends who have been suffering symptoms and they have identified that it was probably down to their breakfast cereals containing malted barley. When they told me I considered they were taking far too many risks eating the stuff, and yet there was I....! I...
  20. cristiana
    Greebo - thank you so much for pointing this out. I think you may be onto something, especially as I have been eating at least a bar or two a week since my diagnosis! Shameful, I have always loved chocolate and thought it was OK to eat this stuff as it is listed in the 2013 Coeliac UK Food and Drink Directory p. 142 as suitable. However (says she,...
  21. cristiana
    Hi Mum in Norway! Thank you - sorry, only just seen your post. Don't know how this system works yet! They don't use wheat as far as I am aware in the gluten-free foods/flours I buy - things like tapioca, potato, rice flour instead etc. It is interesting though as soya makes my tummy sore and that seems to be in everything I like esp. chocolate...
  22. cristiana
    Hi Answerseeker. It is strange you should have just posted this as I am looking for some of the same answers myself. I have been gluten free, bar a few very annoying accidents, since May but a feel lot weaker in my body than I did a year ago pre-diagnosis, although the gastro symptoms have gone. My legs and arms at times don’t feel as if they are part o...
  23. cristiana
    It was the anxiety which took me to the doctor. I have never felt so ill in my life, it came from nowhere and was so alien to me I didn't know what it was at first! I had this incredibly, heavy feeling, on my shoulders - really odd. Just for a few hours a day. Then it started to take over the day. My doctor tested my blood - raised immunoglobulins and...
  24. cristiana
    Thank you so much - I really appreciate your advice.
  25. cristiana
    Thank you so much for your advice ravenwoodglass, and kind welcome I feared it might be gluten ataxia. I am puzzled that it has only arisen after going gluten free - but then again, as you can see, my first attempts at gluten free in recent months haven't been very successful! I am trying to be really strict now as I am scared this ataxia will just get...
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