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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About cristiana

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  1. Hi Ender Yes, a stitch in time saves nine as we say here - maybe you do in the States.   My cousin is a medical rep and says the billions that could be saved if money was spent trying to catch things before they became big problems....  I think I would be more proactive in trying to find the reason for all this myself if it weren't for the fact that the symptoms wax and wane.   At the moment I have no symptoms but a few weeks ago I could feel tingles and buzzing and thought if I held a light bulb it might light up!   I am hoping here that someone else with a bit more knowledge will chime in but if someone has been starved of, say, B12, I am thinking that it may take some time for the nerves to mend.     Can anyone else help here?    
  2. Hi Ender When I was diagnosed with celiac disease I had terrible tingling and buzzing going on in my extremities, particularly in my left foot.  It very gradually got better after sticking to a gluten free diet but also supplementation - iron (ferritin); B12 (sublingual methylcobalamin) and vitamin D.   I would get those levels checked if I were you as if you are out these can cause all sorts of weird symptoms.  I have been told B12 in particularly shouldn't just be borderline normal but in the 500s to avoid tingling.  I got muscle twitching too and read that I should be supplementing magnesium and I think that probably helped.    The odd thing is from time to time these things come back and I really don't know why.  I live in Britain and our national health service, which is free to all, is under a lot of pressure and so there isn't a lot of money to spend on lots of proactive investigations.  My private health policy isn't that brilliant either in this regard so I don't know whether I will ever find out why I get these symptoms returning - sometimes for weeks or months at a time.  It has been suggested to me that it could be thyroid related.   But having read around it a lot on dr google I think what might be happening in my case is cross-contamination, as careful as I try to be.    I also have just found out that my iron levels have dipped again so perhaps I am still not completely healed and need to supplement a bit more again (and I was dx'd in 2013, although as a woman low iron can be due to other factors).   I would say it is early days yet but if you can get your levels tested at least you can see if you have any deficiencies - a good starting point.      
  3. Perhaps a bit too early to be talking about this as we are scarcely half way through November, but my mother told me that the big UK supermarket chain are running a big advertising campaign for a gluten free Christmas on TV and I found it here on youtube. I was really pleased to see that they are offering a gluten free Christmas cake in their range as my own was a complete disaster last year.

    Bienvenue - and my sympathies.   I love France but have only visited it once since my coeliac diagnosis and it was as difficult as you say, although I did find a few products in a really huge supermarket in Normandy but that was just before we left.   I was really suffering with neuropathy when we made that trip.  We were in Bayeux one day and I was wondering why I had this awful tingling going on in my extremities.  Imagine my surprise when the lady in front of me in a food queue at a café was trying to show the gentleman behind the counter a document explaining "Je suis intolerante au gluten" (or maybe it was "Je suis coeliaque"? ) (sp?) and clearly the man hadn't a clue what she meant!   We got talking, it turned out she was English, had just been diagnosed, and had found this document on a website, presumably.  The great thing was I was able to have a chat with her and even discover that she had neuropathy, and her doctor had told her it was all connected.  That put my mind at rest and I was able to enjoy the rest of the holiday. I do hope that awareness and recognition spreads to the more rural regions.  My mother-in-law lives in Italy in a very remote village and although Italy has really embraced gluten-free, it is more difficult in the countryside.   All the very best.
  5. Girls, thanks so much for your replies.  And the hugs!  I think I ought to print your advice out to pursue the thyroid question with my doctor once I know how the scan goes.   Wow - anemic for 20 years?  That is dreadful.    I have just received some Floradix in the post, a German iron supplement that one can add to OJ and hopefully it will be easier than ferrous glucanate which I used not to have problems with but now makes me belch.  Strange thing how one can become less tolerant of these things... I do think I have problems with my thyroid, I do have at least one nodule but also have dry, brittle hair, which was never thick but is much finer these days and I often have a v. low body temperature.  What fun! Thank you for sharing all of this with me, it is v. helpful.   And I hope your mum's biopsy goes well, icelandgirl.
  6. Okay - as expected my iron has taken a dive (from 41 to 20).   I imagine what I am going through has a lot to do with this, plus the fact that I have ceased supplementation over a year ago.   Cyclinglady - is it common practice for celiacs to have to routinely resort to supplementation?  I have been gluten-free since May 2013 and ceased iron tablets about a year later, having only taken one ferrous glucanate once in a while when I remembered to towards the end of that time! Also, another question for you or anyone else, can thyroid be responsible for what they call 'flooding'?   I cannot believe the difference between last month and this.  I am a bit scared about it TBH.   (I am having a scan just to be sure). Sorry to any men reading!     
  7. Hi cyclinglady - thank you so much.   This month has been awful, worst ever,  and yet other months are fine.  I can't help thinking my thyroid is playing up and could be behind all of this.  I guess I will need to ask for more thyroid tests if my scan doesn't reveal anything.      
  8. Like many of you I had anemia at dx.  With various tablets and including red meat in my diet things improved and last reading, over a year ago, I had reached 41 on the scale.    I have had to stop taking the tablets as increasingly they disagreed with me and my readings were going up without them.  However, approaching the menopause with episodes of menorrhagia I am being tested again for  iron and I suspect my levels will be down again.  My question is did any of you approaching menopause have iron levels that were affected in this way and if so, what is a good normal level to aim for with blood iron?  Thanks!      
  9. neuropathy?

    Do you have problems with you sacroiliac joint?  It could be that. Periodically I get something similar except in my case it is not warmth but the feeling that my hip is on fire, and it refers down my thigh.  It was bad last night but having rested it is good again.  In my case it is, I think, made worse by certain exercises and I have learned that rest is usually helpful.   Today I am going out for a walk on the flat, rather than in the hills.  I avoid slopes, walking on uneven ground and jarring movements when it is bad as it can make it worse.  Incidentally, from typing in the words 'sacroiliac' and 'celiac' on a google search it does appear that this type of deep joint pain can be a celiac thing.             
  10. Eating out - please help

    If you can bear to eat them, tins of sardines and bags of nuts are good portable source of protein.  On a recent trip to Scotland I discovered the supermarket over the road made some nice bowls of salad, ready to eat, so I didn't go hungry and in fact it would have been a very healthy diet had I not discovered they also sold excellent  gluten-free Scottish shortbread!  I take my own plastic cutlery and crockery when I travel, easy to carry and nicer than eating out of a tin can if that is all that is available to me.  When I have to eat out with others and suspect the restaurant would not be able to cater for me, I bring a nut bar with me and drink coffee, having cleared  it with the restaurant first.  They are usually fine about it.
  11. I have relapses and apart from small amounts of gluten I am seeing that even pure oats are really a problem for me (I think this is the case in about 10 per cent of celiacs?).   I had some several weeks ago and have had a burning stomach and C ever since(not D, which is what I had at DX) but I also find that things I normally eat without problems will cause pain after eating oats.  I find thinly sliced ginger in hot water really soothes my stomach at times like this.  All so odd as I could eat oats for England before diagnosis!  This has all happened to me before but I thought I would give pure oats one more try as I miss them. Funny you should mention those articles that we are never really healed - I have seen those too and every time I have a setback I think of them! I don't know how true they are, but I could believe them at times like this!
  12. Thanks so much for posting  thread.   It seems to me there could be a need for manufacturers to note that they are Oat Free, along the ever-growing list of symbols!  I am too now experiencing bad headaches, something I thought I had left behind.   Yuck!
  13. I shall be following the subject with great interest.   Re: symptoms I have a lot of tingles, twinges and buzzes - some days with this electricity I am sure if they wired me up I could power the Christmas Lights in London's Regent Street.  I have had all sorts of tests since DX including diabetes, MRIs, thyroid.   Apart from a DX of ulnar compression  I have never found out why I have these waxing and waning things happening, maybe this is why.   Thanks again for all your help
  14. Thank you so much!   I am definitely going to look into this.  Since going gluten-free I  have been increasingly reliant on products that probably share lines with oats but have never given it a thought!  The gut pain I have gone through the two or three times I have eaten pure oats since DX lasts a long while so what on earth made me eat them again the other day?    I wouldn't sit down and eat a PIzza Hut pizza or a MacDonalds burger so why would I sit down and eat loads of flapjack and biscuits with oats in them knowing that for me they cause the same sort of pain that I was experiencing at DX? Your symptoms are so similar to mine I am sure I have the same problem, it is extremely good of you to have taken the time to list them all.    If anyone else is reading this and has gone through similar experiences please do post, it seems to me that squirmingitch has made an important point and one that could help a much wider audience, and also might help researchers on the continuing question of oats in the celiac diet.    Thanks again, squirmingitch.  
  15. I have just tried certified gluten-free pure oats again.  I last tried them in November and had a burning sensation in my gut for some weeks so did not want to eat them for a while before trying again.  So I had hoped now I am nearly two and a half years into the gluten-free journey I might be able to eat them again but I am in pain, yet again ,so have decided that I am probably one of those celiacs for whom avenine is a problem and I intend to steer well clear of them in future.  Very disappointing for someone with Scottish ancestry! One thing I would be very interested to know is if anyone who has a problem with oats, as a celiac, has also experienced neurological symptoms after eating them.  I have just started a new tingling symptom in my upper thigh and don't know whether to pin this on the oats or sciatica, as in fact I have been doing some heavy lifting in the last couple of days. Many thanks.