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cristiana last won the day on August 25

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  1. I have posted recently on this but something to add. A friend of mine told me she gets bad sores when she eats potato chips loaded with salt. I am now finding that I have the same problem if I overindulge. She has non-celiac gluten intollerance; I have celiac disease. I don't think there is any link with either but you might like to see if it is anything that you are eating. Also, reading the web, pickles can also be a cause.
  2. Hi Pegleg My gastroenterologist told me (after all sorts of tests came back normal) that I might have IBS - I had the exact same Mystery Pain # 1 that you cite above. I could understand having pain before a BM but mine really majored after one - sorry, TMI - and it could continue for hours sometimes and the pain seemed also to affect my hip/sacroiliac area. Also a feeling of bloating - without being able to pass wind, sorry - more tmi! He told me to go lactofree - didn't help at all. When I went completely dairy free for a few weeks I had relief. I couldn't believe it as the pain had been so bad at times - I thought it had to be something far worse. My mother has osteoporosis so I have gone back to dairy - hard cheese predominantly - and the odd latte! Then I get that pressure/pain building up when I overdo the dairy so then just cut back. It seems to work. I know there are other foodstuffs that contain calcium like tinned sardines, which I eat, but I would miss my dairy! (One thing I really try not to eat is fat probiotic yoghurt - oooh, just thinking about it makes my hip hurt!) What I can also tell you is that since DX with celiac disease three years ago if I wear tight skirts/elastic waistbands/tights etc any pain and bloating that I have is magnified tenfold. The wrong outfit combo really takes its toll! I realise you may not eat dairy - so perhaps for you there is another trigger? Are you still eating oats, perhaps? For me dairy was the trigger, but I am sure one can get these cramps/bloating with other foodstuffs. As regards Mystery #2 tingling - that's me, although I have to say I don't have the bodywide pain you describe - but I have had pain, a sort of painful itch/soreness deep in my ribs and sacroiliact joints. The tingling comes and goes and I think trace amounts of gluten from somewhere are possibly to blame - my recent outbreaks have been when I have eaten out. What amazes me is how long the tingles last - weeks. I also get facial tingles and twitches, on occasion bee-sting pains in my cheek. A few months ago someone was on the forum and I have become such a hypochondriac/Dr Googler I was conversant with the effects of too much B6 and suggested their tingles may be caused by that. Lo and behold the poster came back after some tests and said that was exactly what they had!! I have never had my B6 tested but might do so in the New Year. If you do get any answers please let us know. And BTW - how is your thyroid?
  3. Hi Emma I just wanted to chime in to encourage you that although you may be having joint pain it may not persist. I gave up gluten in May 2013 after being diagnosed with celiac disease that April. Within months I started to get searing pain in my sacroliac joints and pain that referred to all sorts of other sites. The pain was so bad that I convinced myself I must have something dreadfully wrong with me (I even thought it might be my kidneys packing up!) but kept walking (my favourite exercise) when in actual fact I think I should have been gentler on myself at the time. I remember on a couple of walks just sitting on the ground crying in pain and despair! Glad it was in the middle of the countryside and no-one else was around! I've had peculiar pain in my ribs too - a doctor suggested shingles without the rash - I'm not sure but it all finally got a lot better after about a year. I found the pain caused a viscious circle as I would tense up and it would make things worse. I often felt worse after a day at home having had time to think about it than after a day spent with other people. I found warm baths with a good handful of magnesium (Epsom Salts) very helpful. I also found a topical NSAID gel helpful - I can't take NSAIDs orally. It is good to try to eat anti-inflammatory foods but I would also say read up about ginger in particular and its effects on joint pain, I think there may be something in trying to get more of that into one's diet. A few slices of ginger in hot water is a very pleasant, comforting drink.
  4. Hi James again. One other thought - I've just posted a similar reply on another thread. Are you eating oats? Even though the pure, uncontaminated by gluten variety are well tolerated by most celiacs a few of us (and I am one) cannot eat them and feel like I have had some gluten if I do. If you are eating them it might be one foodstuff you might want to have a break from for a while to see if it helps at all. In the UK I think they tell us to give it six months to a year after diagnosis before re- introducing pure oats into the diet to see how one reacts. I also agree with what Ennis says about Magnesium. Very helpful and calming if you put a good handful of crystals - we call them Epsom Salts here in the UK - into a warm bath and stay there for about 20 minutes.
  5. Hiya Kam Just one thought ... might not help with all your symptoms but might alleviate some - are you still eating oats, abeit pure oats (those that haven't been cross-contaminated by gluten?) Some celiacs have issues with a reaction to the protein avenin in oats. I was told by the NHS to give up oats 'for a few months' but when I went back to them I had a very sore, burning stomach indeed, plus terrible C. Most celiacs tolerate oats well, but I know at least one person on this forum that can't eat them either. If you are stil eating oats it might be worth giving them a break for a while?
  6. Welcome James. Like ravenwoodglass I have had anxiety too and reading this forum have concluded it is a celiac thing for some. On the whole is better but for me it tends to come back when I am stressed about something like a project deadline and I think that gluten sneaking in may well have a part to play too. Forgive me as I may have missed something in your post but when you say you aren't anemic are they testing for ferritin or B12? Iif you haven't had your B12 or blood iron checked (ferritin) it might be worth it. This affects me hugely if my levels are down. Sublingual B12 is very effective as a supplement. Also, as you might see in previous posts on anxiety, I have found a lot of help on the following website. If you think it might help there is a book, too.
  7. Another thought. I had two similar episodes of terrible canker sores a few years apart. They came on really quickly and both times I discovered I had them because when I was eating it felt like there was glass in my marmalade! Both episodes occurred before my celiac diagnosis and I just have a feeling it was also to do with anemia. My B12 was very low at diagnosis and I had iron anemia too. There are quite a lot of articles on the web about it - here's just one of them. I hope that you find your answers but might be worth getting your levels of B12 and iron checked and if required, supplement.
  8. Great advice. Funny but I have just remembered years ago going through a stage when my feet really burned at night. I'd completely forgotten that. I put it down to chilblains although on reflection I'm pretty sure it was B12 deficiency. B12 is a wonder vitamin and so much goes wrong without it.
  9. Raspberry - a friend (who isn't a celiac but has non celiac gluten sensitivity) and I (a celiac) have both have had all sorts of odd neurological symptoms and neither of us have given up dairy, although have gone gluten free. I have seen some improvement, she has seen huge improvement. I would say definitely try going gluten free but you may need to be patient as neurological symptoms are often the slowest to clear up. As for dairy , that's more difficult. I have noticed on MS forums that some people find they improve going dairy free, too, so perhaps that would imply that it might have some impact on nerve health in certain cases but it is a big food group to give up. It will be interesting to see what other people post, but I think I would be inclined to get serious about going gluten free first.
  10. Good point. I ought to say that I am back to milk now, but not every day - so I think it was to do with blunted villi and recovery that was causing symptoms. I can get away with drinking so much - then I get bloating and mild pain, so I give it a miss for a while then go back to it. But I think gradually it is ceasing to be a problem. That said, I never had a problem with hard cheeses like cheddar, even when I was at my worst, so I'm wondering, apart from casein and lactose could there be anything else?
  11. It's always nice to meet a fellow suffer - although I am sorry you have this problem! Also I used to get, when it was at its worse, wierd feelings in my fingers when I unscrewed a jam jar top, for example. Kind of pins and needles. That doesn't happen anymore. Now occasionally I find when I am washing my hands under hot water and wringing my fingers instead I get weird although mild sensory changes, a bit like there is a long hair caught on my fingers, or a cobweb. I've googled it an it seems this can happen with ulnar nerve problems. Apparently ulnar nerve and carpal tunnel are something we celiacs are prone to.
  12. Interesting plumbago - I wonder too. When I first tried giving up milk things really improved so I then thought I'd buy some lactofree milk, as I did miss it. TMI but it literally worked like a laxative, and very quickly! I can't help wondering there must be something else in milk. Or do you think they don't quite remove all the lactose? Maybe they are allowed to say it is lactofree if it is under a certain level. I'd love an answer on this one, too.
  13. It is interesting you have ulnar nerve issues. Me too, left and right. Starting really playing up just before diagnosis - I was always waking up with numb fingers, hands or lower arms. So I think gluten had a bearing. I had the tests and have a confirmed diagnosis for that one.
  14. Ironictruth, I think you could be onto something. Get him/her to check your sacroiliac joints too, they cause all sorts of referred pain. Cstark - I have had this sort of pulsating buzzing in my face in the past, it waxes and wanes. Doc thinks I have mild neuralgia. Triggers seem to be poor neck position and also cold wind on my face. Caffeine too. It plays up when I am anxious. I also get buzzing in my left leg that seems to come and go. All very odd. I think it could all be nerve damage caused by years of undiagnosed celiac disease. When it strikes I try to eliminate the triggers. Also, I have found taking a good vitamin B supplement helpful, as well as zinc and vitamin C.