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About cristiana

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  1. Hi. I have been reading your post and thinking about how my pain was around diagnosis. It was above the belly button, I think where you are describing. At the time I assumed I had a stomach ulcer. I had been taking Neurofen for an ear problem and assumed it was the NSAID that had caused my stomach ulcer (which I actually didn't have, when I had an endoscopy a few weeks later my stomach was looking great! My small intestine was not!). Going back to the pain, it was a burning feeling. My doctor prescribed Omeprazole but it didn't touch it. In fact I ended up with bad D. which eventually lead to me having all the tests for Celiac Disease. I still get that pain if I eat oats (pure oats) that are supposed to be OK for most Celiacs. I get various pains in different places in my digestive tract from time to time, but that burning pain is something I won't forget. The other thing I had that you mention was that pain between the shoulder blades. I had that - I felt almost like someone was pushing my shoulders down. So odd. I get palpitations when I am anemic. I hope you get some answers soon. It is pretty tough having to keep going from one doctor to another, but sometimes it is the only way.
  2. Hi Zozo My symptoms are usually a feeling of slight nausea and a burning feeling around my abdomen, sort of around waistband level, I also feel a bit bloated. I might start to feel like this within hours of eating, but for some reason the symptoms seem to really show up a day or so later and can last some time. I think up to three weeks of not feeling quite right - not terribly ill, but uncomfortable. I think it depends on how much gluten I have ingested. Once soon after diagnosis I ate two pancakes that someone had given to me by mistake but I really didn't have much of a reaction. A year or so later I ate something - not even sure what it was - but I found for about two or three weeks afterwards I couldn't cope with rich foods and my stomach burned on and off for that time. So how it affects you over time might change, but you will get better at recognising the signs as time goes on. Eating out I might order the following: Leafy salads but I tend not to order sauces on them, in case. Cakes/sandwiches that are pre-wrapped with the gluten free symbol on the packaging. A lot of the former are sold like that in the UK at cafe's because it makes the caterer's life so much simpler, and they are usually made in a separate facility. I sometimes ring ahead to my favorite pub and ask them to put a baked potato in foil for me, and then they'll put some grated cheese in it and add a salad. At the breakfast buffet, boiled eggs, Gluten Free yoghurt (ask to see the ingredients), fruit. The majority of Indian curries are normally gluten free so if you like spicy food that's something worth considering. Also - pack a picnic. If you can always have some protein snacks on you in case you get caught out somewhere. Nuts, gluten-free cereal bars, cheese, tinned sardines if you can bear them, and to cheer me up when everyone is eating something really nice that I can't, I like to carry emergency rations of chocolate! It is also worth googling the words 'celiac', 'gluten free' and the town you are visiting - there are usually reviews from other celiacs out there on restaurants and that might help. This website is also great for flagging up trustworthy options.
  3. Hi Zozo I think what you say about restaurants not wanting to be sued is quite true. I remember when I was diagnosed my nutritionalist told me about this case: My celiac disease was only diagnosed in my mid-forties. I could not understand how two younger friends who coincidentally were diagnosed around the same time as me would eat out at restaurants, chance a gluten free dish that might not have been quite so, and not worry too much if they felt a bit off for a few days. I had a lot of symptoms, including weird nerve stuff (tingling in my hands and feet, numbness in my hands on waking) and I just didn't want to make things worse so I tended to take my food with me, or eat before I went out, etc. From what I have read online there are some people who will not eat out at all - never ever; others who advise if you are newly diagnosed wait for a while to heal a bit before you eat out. Others who have eaten out from the get-go. I have followed the second piece of advice. Now three years on I have taken a few risks, eating at kitchens where gluten free food is prepared separately in an environment where otherwise there is gluten. On the whole I have been fine. I either eat at a restaurant where I know the people that run it and have had a chance to explain what I want, in advance, not when they are too stressed to listen! Or if I'm trying somewhere new I make a big point of telling the waiters that I am very ill if I eat gluten. Then when the food is placed in front of me I check it is for me. I try to order low risk foods, things that are unlikely to get mixed up with gluten containing food. So at an Italian I will eat risotto rather than pizza. I try to eat at restaurants that are accredited by Coeliac UK (I live in Britain). That said, in one of them my stomach wasn't quite right the next day - could have been the rich food, but I wondered if it was because flour flies around a lot - it was a pizza restaurant. I'm not eating there again. Trial and error I guess!
  4. Hi frieze I have actually just had my latest result today. Latest installment is I am back to anemic, but this time the hemaglobin has finally tumbled too so whatever my current problem is it isn't too much hemaglobin - at least for a while. My awful perimenopausal symptoms are responsible, there can be no doubt in my mind. It seems to me that my current problem with itching skin which thinking back I had when I was diagnosed (but was too scared to mention to the doctor - I self diagnosed a liver complaint because my liver readings were a bit skewed at the time!) might be because of this anemia. My doctor has given me permission to take very low dosage iron and this will be reviewed in 6 months - in line with your suggestion too. I might come back to this post to give an update in a few months time, in case this is anyone else's problem. Trent's comment about being a male in his 60s and still needing to take iron is interesting. I wonder how common this is? I feel my gut is pretty good these days, but maybe some celiacs need to keep taking supplements forever?
  5. (Trents, just an aside, I see you have been with this community since 2006. It is good to meet someone who has been with since then!) What you say about B12, that is interesting. If you stop taking those supplements, do your hemaglobin levels go down, too? I took huge levels of B12 sublinguals at one point and I wondered if that was putting up my hemaglobin. I have an appointment coming up and I think if my hemaglobin levels are still high, despite having cut back dramatically on both iron and B12, I might request to see a blood expert because I don't want to deprive my body the iron and B12 it needs just because I have high hemaglobin - unless of course there is no other route to take.
  6. That's interesting, trents. Do you supplement B12 too? I do wonder sometimes if I need to look at that again as I get tingling and find it responds quite quickly to a dosing of B12, but I'm now concerned to take that too as I imagine that can affect the hemaglobin, too?
  7. Not as far as I know. I gather that can be a factor - I had a chest X ray since I fell ill with possible pneumonia but nothing unusual detected.
  8. Hi All Just wanting to hear from anyone who has ever had/or who has high hemoglobin. I gather a lot of us celiacs have strange blood test results, particularly liver function (enzyme) tests, which often improve after going gluten-free. Thankfully mine have to date, all apart from one thing. I was anemic before DX and went onto iron supplements and I have had high end of hemoglobin readings ever since. My gastroenterologist has told me not to take any more iron supplements because of this - last test I think it was 15.5 which for my labs is the limit. He mentioned something called polycythemia. Yet my ferritin level isn't brilliant, 20, it has taken a bit of a dive because of excessive blood loss - sorry TMI - perimenopause problems. I realise that polycythemia can be caused by living at a high altitude - I don't. I don't smoke either, another cause. I am not dehydrated when I have blood tests - yet another cause. The only polcythemia symptoms I have is a flushed face (on and off, have always had it) and itching, but that could be entirely coincidental. I have seen other posts about celiacs with this problem and one hazarded the theory that having been so deprived of iron for so many years, and managing, it could be the body's reaction to suddenly having all it needs. Does anyone else reading have high hemoglobin and if so, is your doctor concerned? Thanks!
  9. Icelandgirl and I often remark, "There's always something [to be worried about]"! Whilst is obviously important to have all these tests and there is good reason to check them (one reads that very occasionally doctors miss something) it has done my health anxiety absolutely no favours having blood test after blood test!
  10. Hi Matt I'd love answers to this one too. My own levels have varied since I have been monitored, over the last three or so years. I asked my GP about this and I seem to recall she said to me that levels of hydration affect this number. i.e. when my figures were in the 90s it was because I was super-hydrated. When my numbers were in the 70s she wasn't worried, either! I'm hoping someone with a better knowledge of these matters will chime in but the last time I was tested my gastroenterologist was very pleased with my kidney and liver function numbers - so it seems to me that when my own numbers were in the 70s on a couple of occasions I must have been less well hydrated when I had the test those times? And that these numbers are therefore subject to variation.
  11. Hi Elle. To be honest, to this day I am not sure if I actually had zoster sine herpete. It was one of several suggestions by bewildered doctors. What I can tell you is that I had to have MRIs because one doctor thought I might have trapped nerve in my spine and I thought it would reveal something dreadful being the sort of person who gets weird nerve sensations - and it didn't reveal a thing. It was unsettling to have symptoms like that for so long but what made me think my brother in law might have been right was because the worst of the symptoms lasted a year which I gather is pretty typical (but don't panic, because they can go a lot faster!) My nutritionalist told me that if we get run down we are more prone to shingles so that is something to watch. Easy to say (and I'm speaking to myself here!) try not to spend too much time by yourself worrying about these things because anxiety never helps with nerve pain. I found that rest was very beneficial so I would recommend you try to get as much of that as you can. Also, someone suggested a warm bath for 20 minutes with some Epsom salts. That helped too. As I say, just one reason you might be getting this pain but I would continue with the investigations and perhaps mention the pain to your doctor and ask if it could be shingles.
  12. Hi Elle I just wanted to add, I too have had that burning pain, in my case it was on the left hand side of my torso, which wrapped round from my back to the front of my ribs in a line. It went on for months. I was given various possible diagnoses although my brother in law thought it might be shingles without the rash (he is a GP). Zoster sine herpete. Yo may wish to look it up. Obviously I am not a medical person and can't diagnose online but it could be worth considering. That said, continue with your quest to rule out (or rule in) celiac and keep us posted. Hugs
  13. RMJ - thanks for coming back to us. Keep us posted if you do get any answers. I think magnesium is definitely worth a shot, no pun intended. As I said in an earlier post, mine tends to come and go - I really don't know why but if I get any answers I'll let you know, too. I suspect sometimes that it cross contamination, as well as perhaps damage that has accrued over the years.
  14. Hello Elle Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor. I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times. So much you are going through could very well be gluten related, it really could. But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is. I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing. I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid! It always makes me feel that bit stronger when I'm in the waiting room at the doctors! There is lots of great advice above. Do take it and make sure you come back if you need further support. There are some fantastic people here to help.