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cristiana last won the day on August 25 2016

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  1. Hola de nuevo. It depends what you are after. If you are after good value, clean hotels, we find that is usually the norm for the Premier Inn chain. We tend to use them a lot. Not luxury, but usually of a good standard. Unhelpfully I have never stayed in one in London but google 'Premier Inns London' and there seems to be a good selection. Just keep in mind what you want to do, where you want to be and public transport. You'll have to do some homework. On the negative side their gluten free food provision is a bit disappointing but for breakfast they provide gluten free toast, jam, and there is fruit, yoghurt, juices, tea and coffee. If at a Premier Inn I usually eat lunch or dinner somewhere else, as I don't think I've come across one with a gluten free menu yet. Franky and Benny's, ASK, or somewhere else. In London you should have plenty of choice. I once stayed at the Premier Inn in Perth, Scotland, and there was a wonderful Marks and Spencer store opposite so just bought myself salads and some of their amazing gluten free cakes, etc. They have a great range of cakes! Not the ideal diet longterm, but better than nothing. In fact, the Premier Inn I most enjoyed staying in was in Scotland - in Edinburgh at Lauriston Place - so central, you could walk to all the main sites, and lots of good restaurants. If you are ever thinking of going to Scotland I couldn't recommend it enough - although it is a bit of a walk from the bus station (or a taxi ride) once you are there it is brilliantly situated.
  2. Hola Ricardo I am very sensitive to gluten but I've never had cross-contamination problems from ASK or Franky and Benny's - both chain restaurants, most large towns will have one or the other - or both! My children love them too. Ask for the Gluten Free menus when you arrive and just make sure when you order to say your son is a Coeliac. I always say I'll be really ill if I have any gluten and they take it very seriously. ¡Buen viaje!
  3. Sorry Lukas, meant to say , the ENT's tests were odd - things like walking blindfolded to see if I drifted to the right or left, he stuck a probe up my nose to test my Eustachian Tube or something, there was a hearing test etc. I'm not sure if any of that is relevant but I thought I'd let you know in case! Also, I had separate tests with a neurologist type for my ulnar compression. Nerve conduction tests - quite interesting really. That problem is far less noticeable these days. I'd definitely get treatment for the B12 and Iron deficiencies as they can make thinsg much worse. Make sure you get some follow up tests for your levels as with Iron you can have too much of a good thing, and then it can be dangerous. Also check your Vit D levels are good. Another thing is magnesium supplementation is wonderful for tingles and twitches. Having a warm bath with a generous handful of magnesium salts in it (Epsom Salts) is very soothing for painful joints and limbs. I also think slow release vitamin C and zinc has helped me a lot. Maybe try not to consume much caffeine at this time, see if that helps.
  4. Hi again Lukas Regarding the tests for the cotton wool under foot/walking on a rolling deck problem, I eventually went to see an Ear Nose Throat specialist. It was odd how it came about because for a while kept going back to the family doctor (what we call a GP here in the UK) and I had all sorts of in surgery tests like the hall pike maneoevure and a doctor asking me to watch a pen as he moved it around to see if my eyes were training on it properly - that sort of stuff. Everything seemed normal in this regard but I was told I probably had had something minor wrong with my ear so I needed to retrain my balance and was given a sheet of exercises to follow. Anyway, finally I developped tinitis in my right ear which normally would have been a bit of a downer but it was at that point my doctor thought I should see the ENT. The ENT did all his tests, found nothing wrong, so thought I should have an MRI. The MRI showed no neuroma (something that is incredibly rare but something they check for in case that is causing tinnitus) but my cervical spine was in a real state. Even to my amateur eye I could see it was badly aligned. My specialist said I undoubtedly had cervical vertigo. Our spine has an important part to play in balance and apparently if the neck is badly aligned it can cause all sorts of balance issues, giving off the wrong message to the brain or something. (You had better look up the condition on the internet as I think I'm probably explaining it badly) Anyway, the ENT then passed me onto one of his colleagues to deal with - a spinal surgeon!!!! But the extraordinary thing was that in the time I was waiting to see this next specialist the dizziness/cotton wool feeling really improved. I think it was partly to do with the fact that I had really got into the habit of over analysing my walking and once I knew what was behind it all I stopped obsessing about it so much and it helped. I'm not saying it is all in your mind - it definitely isn't - but anxiety turns the volume up on symptoms, I am so sure of that. When I saw the spinal surgeon he wasn't at all interested in taking things further (thank goodness) but it just goes to show that dodgy necks can cause all sorts of problems. Just an aside but if your neck is causing you problems you may wish to look at using a hand towel, rolled up, to put under your neck when you sleep instead of a pillow. A physio told me this is a great way to sleep. It is important how you fold it, mind you. Interestingly, I find it has helped with my facial paresthesia. There is a lot of contradictory information on the internet about what I would describe as a creepy crawly feeling I get in my face but some people think it could be due to neck problems.
  5. Hi Lukas Firstly Welcome to the Forum. I know others will join in but I'd just like to say if you read all my post history you would see that I have had very similar symptoms to you. I was diagnosed in 2013. Some of my symptoms I'm fairly sure are celiac related. Sometimes the answer is rather more complicated. Here are the ones that mirror yours: I had tingling, pins and needles and numb arms on waking. Definitely got worse prior to my diagnosis, but I had some tests about a year later and it was found that I had ulnar compression. About three months after diagnosis I felt at times I was walking on cotton wool and on board a rolling ship deck. Turns out after extensive tests it was due to an old whiplash injury that I made worse after picking up my young son (did this after my diagnosis but completely forgot about it. It wasn't until my neck began to hurt many months later that I put two and two together that I realised it wasn't ataxia after all!) I still have paresthesia. Before diagnosis I was pretty ill and the stress of it made my face twitch. Those areas affected have since started to tingle and sometimes hurt (like a bee sting). I believe I have some sort of damage to my trigeminal nerve down to gluten exposure that stress made worse. I am afraid I have become a real Dr Googler meantime. But when the medical profession can't give immediate answers I think this can happen. What I have concluded is that all of these symptoms could have something to do with gluten or possibly nothing and can be caused by upper neck problems. This is the complicated world I live in! On the positive side, you are still very early on in the healing process and neuro symptoms are the ones that often take a while to get better. If you stay with us on the forum for a while and start to see improvements do let us know as it would be a great encouragement to many to know. There are plenty of good outcomes when we leave gluten behind. Regarding why you got better for a while? I hope someone else might be able to answer, but I did read a case of where this happened to a professional guitar player who went to Spain for a while and as there is much less gluten in the diet there they found the tingling and numbness in their fingers went away. It came back when they returned to the UK. Was your diet any different during that time? Anyway, good to 'meet' you.
  6. Yes, I imagine not having a diagnosis is difficult. A friend of mine doesn't have celiac disease (she had all the tests) but her awful neurological symptoms are now getting better as a result of a gluten free diet that she took up to keep someone else company. So it just shows how important that people who have neurological problems look into celiac disease and then even if they don't have it come off gluten for a bit to see if that might be behind it. And I so agree about treats!
  7. I think I need to take this all much more seriously. Strange as I have a couple of celiac friends who sail very close to the wind and don't take all these precautions and seem to be fine. Whereas I get all this odd stuff and try to tell everyone why I am being careful and they think I'm being silly. I suppose the only real way to be absolutely sure is to go completely whole food and be very scruplulous about the kitchen environment. The symptoms we have could be or could not be gluten, that is the question, (wonder if Shakespeare was a celiac) and I guess the only way for me to really find out is to become much more careful in 2017. I was listening to a Radio 4 programme a while back and they said in the production process of one of those hot chocolate drinks (they didn't name a brand) the product or its ingredients might go through 25 different processes - lots of room for CC, I thought to myself, knocking back the Chocolate Options drink.
  8. Hello Manasota. I am truly grateful to you for taking the time to write. It is comforting to me that your eye symptoms that resembled mine passed, although it seems you have much else to deal with - I am sorry. The thing I find very difficult as a celiac is that our condition could explain so much, and yet could always be something else! Did you have the water on glass type migraine, out of interest? JMG - I am wondering if sharing a kitchen could be causing CC issues. I think I'm going to try to pay more attention there.
  9. Thank you for posting your experiences. I hope others might chime in, but meantime I found this old article which gives me hope that what I have is to do with celiac disease, although I find it unnerving (excuse the pun) that it could be nerve damage and that it might get worse. My optician seems pretty unconcerned which I should be glad about but I don't like these episodes because to me they aren't like my previous aura migraines that I could see with my eyes closed. But then again, if the water on glass effect that I get - i.e. feel like I'm looking through a windscreen with raindrops on it, has been described as something migraine sufferers get. What I find odd is that I can't see the water droplets when I'm in the dark or with my eyes closed - only in certain light conditions. That is so unlike my previous aura migraines. http://www.morningjournal.com/article/MJ/20110623/NEWS/306239995
  10. In the international room, JMG and I have been talking about the unexplained eye symptoms that we have had that we believe has been a result of gluten damage. We wanted to know if anyone has had eye symptoms which the medical profession have either diagnosed or have, you feel, mis-diagnosed. I have had aura migraines in both eyes in the past but about three years ago I started to get sparkles in my right eye only which matched this pic of a scintillating scotoma, except the pretty sparkles were limited only to the centre of my eye and never took over my vision. It lasted about ten minutes and there was no headache afterwards. No temporary blindness either. https://en.wikipedia.org/wiki/Scintillating_scotoma#/media/File:ScintillatingScotoma3.jpg Now I get odd bright lights either in a horizontal line or sometimes in a circle, both affecting my central vision, when I have been doing a lot of paperwork or screen work, or sometimes just after straining to look downwards with my right eye. It can go a bit weird in my central vision, hard to describe as I can see past it - almost like looking through raindrops on glass. T I only notice it in certain light conditions. I notice that it goes away very quickly afterwards. I have had retinal scans, which were perfect. Diabetes tests and cholestoral tests. All fine. I had an MRI when I started to get tinnitus just before the scotomas started and it was fine. I've been told it is another variant of migraine but I'm not so sure as I can't see these lights when my eyes are closed and it only ever effects the one eye. JMG and I have been wondering if maybe what we have is damage to the optic nerve - neuritis. Has anyone else had anything similar?
  11. Thank you so much for getting back to me. I don't get grey patches but eithert tiny sparkling lights in my centre vision, or sometimes what I can only describe as what looks like water on a windscreen, either in a tiny line acrross my central vision or sometimes covering a third of my central vision. It does not obscure my vision, I can still see but it tends to be more noticeable if I squint, i.e. putting pressure on my eyeball. It goes away afer a few minutes. I have googled expecting to see loads of people with the same symptoms but I have found nothing. The only thing that did seems similar was one website saying optic neuritis can cause sparkles. If that is what I have I obviously have it very mildly. I honestly don't think I'd be aware of it but I'm currently doing a lot of computer work and staring at black text on white - which seems to be a big trigger. My optician says it is a type of migraine but I'm not so sure. Has that ever been put forward as the cause for your problem? I get tinnitus that side (hence MRI) and also tingles in my right trigeminal nerve so perhaps that side of my brain/nerves has been damaged by gluten. I'm wondering if it might be worth my while starting a new thread. Have you already done this yourself as I'd like to read what you wrote?
  12. Sorry to go slightly off piste but what is your eye issue, JMG, if you don't mind my asking? My right one isn't quite right since I got ill although I pass my eye tests and had a retinal scan an all appears well. Oh - and an MRI. I am no stranger to tests!