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cristiana last won the day on April 9

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  • icelandgirl

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  1. Hi again.  Kam - it seems that six weeks is the recommended length of a gluten trial in the UK if you need to reintroduce it and I am fairly sure my own doctor said at least two slices of normal toast every day would be adequate - but you might want to check that.


    I took it upon myself to eat everything I could that I knew would be forbidden once I was gluten free so ate Weetabix, Twix Bars, Penguins.... It brought back a tight headache across the temples that I hadn't had since I was at school. I can almost feel that headache again just thinking about that gluten trial!

    I sometimes have the sweet taste but it has been down to new toothpaste or artificial sweeteners in drink.   I get very shaky sometimes if I am not eating regular meals..  If you are concerned the blood test for diabetes is very easy.  Have you had a test before?

    Joan b - I was put onto citalopram when I was undiagnosed.  It was a very small dose so I am still not sure whether it helped or not although I think it probably took the edge off things.  I felt worse for a few days when I first took it which apparently is a common side-effect.  It is worth remembering this - things should get better soon.  In my own case I found it was definitely worth looking at other life-style factors such as getting enough exercise, sunshine, omega 3 etc in the meantime.


  2. A couple of other things I forgot to say. 

    The physical manifestations of coeliac disease are very real but if my own experience is anything to go by anxiety just makes everything a whole lot worse - too much adrenaline does a lot of strange things to us.  If you are feeling very anxious try to see what steps you can take to alleviate anxiety.  There are many helpful posts on the subject on this website.

    I harp on about it quite a lot in my posts on anxiety and depression but I found the principles outlined in the following books so helpful whilst I was waiting for my DX.  You might like to take a quick look, even without buying them there are some helpful tips on line.


    The 'six steps' are to do with:

    - physical exercise 
    - omega-3 fatty acids
    - natural sunlight exposure 
    - restorative sleep
    - social connectedness
    - meaningful, engaging activity

    Although the book is to do with depression I found it helped with my anxiety, too.   Or, more specifically to do with anxiety:


    Also, I notice you say you are worried you have MS or some other illness.   A whole lot of us on this website have found ourselves in this situation and it really did turn out to be coeliac disease all along.   My nutritionalist calls it 'the great mimicker'.   

    All the very best.



  3. Hi Kam - I have just read your older post, too, and see you are in the UK?  Am I right?

    I'm in the UK and I am only too well aware that the wheels role slowly in the NHS for these follow up appointments with a gastroenteroligst and then on top of that, the actual biopsy.    I see from your previous posts that going private is not an option - I think my friend went private and it cost about £800 for the biopsy and the consultations but that was a couple of years ago.  However, if you could get the money together I imagine you could get all this testing behind you within the month?  

    You may want to give the Coeliac UK helpline a ring and see if they can give any particular advice regarding the long wait you have ahead of you and your awful symptoms to see if there are any other options available to you within the NHS system.


    Everyone's symptoms are different but if you were to search the site with all your symptoms I think you will see that there are examples of people who have had similar experiences - indeed some people have been very poorly - and gluten was found to be the culprit after all.     From your list I have experienced the following symptoms

    IBS, bloating etc,  fatigue, weakness, off balance, muscle pain, twitches, night sweats, extremely poor night vision, hair loss... 

    plus internal itching, hip pain, temporary visual disturbances on waking (hypnopompic hallucinations), migraines of all varieties ... and I am sure I could list more.  Oh yes - and terrible anxiety before going gluten free from which I have occasional setbacks, but I'm winning. 

    Some have been to do with gluten I am quite sure.  Others I am not so sure about - the latest one has been the sensation of my skin being pricked when I go from hot to cold rooms.  Although I am strict about being gluten free I have just realised that some of the yummy Easter eggs I have been scoffing 'may have traces of wheat'....   I stopped the chocolates and the prickling has gone!

    It does sound as if you are on the right road to finding out what is wrong.  

    Keep us posted.




  4. Great words of advice there.  I have had my own fair share of weird blood test results but now try to keep in mind Gemini's wise words about autoimmune diseases affecting the figures, advice she has given me before too. :)  I had elevated protein for a while and worried myself sick.  It wasn't until I was bold enough to raise this matter direct with my gastroenteroligist that he said, 'Oh, we see this with celiac disease from time to time, it isn't that common, but it happens'.   So I would say one question is could celiac disease account for any of these blood results? 

    Also, remember sometimes these weird blood results can be temporary.  A relative of mine had a whole raft of tests with a rheumatologist  for at times debilitating joint pain and after months of blood tests which showed inflammation, and scans -  and goodness knows what - the pain has gone and the medics think it might have been a virus.    We were all terribly concerned but it came to nothing in the end.   


  5. So interesting about the ham, cyclinglady.  My British nutritionalist told me never to go near ham or bacon.  I actually have dared to have a couple of slices recently because our labeling laws in Europe are supposed to stated if gluten has come anywhere into the manufacturing process, although one brand - I think Tescos - actually state theirs is gluten free.    From now on I have resolved to only eat what is definitely stated as being gluten free. 

  6. I am sure you will get a lot of good advice in response to this post and there are quite a few old posts regarding Christmas and Thanksgiving which are worth reading.

    I can tell you the wrong way to go about it, though.

    I stayed with my mother-in-law a couple of years ago.  My husband had mentioned over the phone that I had a problem with gluten but didn't go into any details.   When we got there the poor lady had prepared a meal and the meat had been roasted in beer!   Too late to do anything about it, but fortunately I had some picnic food packed so ate that.   (Tins of gluten free baked beans, fish, gluten-free crackers, fruit, gluten-free chocolate - thankfully that last item was easy to buy in Italy!)

    My mother in law is an excellent cook but gluten was in so much of her cooking I just decided to stick to my picnic for the whole 10 days!  It was a long holiday!   

    What was helpful was that my husband did all the explaining.  I think it is sometimes easier for a blood relative to do the explaining - that way somehow seems a bit less confrontational?  I perhaps was a bit OTT in my approach of not sampling her wares at all costs but I had a lot of bothersome symptoms at the time and didn't want to end up with a worsening situation.

    Some in laws however are very adaptable, like a challenge, etc. I'll let others chime in now, but that was how I handled things that time.

  7. Hello and Welcome Foxtrot.

    That's good advice from Judy.

    Also, you may find you have temporary lactose intolerance.  I had terrific bloating and lower abdominal pain when I was first diagnosed.   I came off  dairy products for a while and felt a whole lot better.  I then  found that I could tolerate hard cheese like cheddar and had small quantities of that.  

    I'm trying to find a link to post to you about it but my newly installed software (my computer hasn't been right since it upgraded to Windows 10) is not allowing me to click on a new tab but look up 'temporary lactose intolerance celiacs 'and you will find the info you need.  

    Another thing is oats.   Oats do not naturally contain gluten but when they are in the manufacturing process can pick up gluten as they are often processed alongside other gluten containing grains.  

    There are 'pure oats' also known as 'gluten free oats' which are processed apart from gluten containing grains.   The good news is a lot of celiacs can cope with these - the bad news is that a) you may find if your tummy is very sore at the moment you might wish to give them a break for a while until it is less sore because the fibre in them might cause some pain; and b) some celiacs will never be able to eat even pure oats as they contain a protein called avenine which affects a small percentage of celiacs.    I don't know where you live but in the UK my home, nutritionalists tend to advise that celiacs avoid all oats for about six months after diagnosis and then introduce pure oats to see if they are causing any pain or discomfort.  

    I'm sorry as it is a lot to take in at first but you will soon get to grips with things.  The good news is that this is probably the best time to be a celiac as so many companies are catering for us today.  All the time I am finding manufacturers are now putting the words gluten free on products where it applies.  Some products have always been gluten free but it now pays to advertise the fact! 



  8. Hello and welcome to the forum.

    I note you are spelling coeliac with an o as well as an e.....:).  Does that mean you are writing from the UK?  I ask not just because I am British and that is the way we spell it over here - not sure why we do though? - but if you are writing from the UK I think you will find it very easy to get a test at the moment: one of my relatives is also a health care professional  who is always being bombarded with reminders to look out for coeliac disease in his GP literature.   I'd just go in and ask, and mention that it is in your family too.  

    My symptoms in my 20s were a nervous stomach which I had on and off for years.  I never thought for one minute I had coeliac disease, by the time I was diagnosed my liver function tests were awry, I had iron anemia and crippling anxiety.  I would say just go for it, you are doing the right thing.  If it isn't coeliac disease then you can look at other things but I think with family history it is well worth pursuing.   If I had seen this ad in my 20s I think I would have gone to see my GP and would have saved myself a lot of problems later.

    Let us know how you get on.




  9. Hello both.

    Beccs - is there any chance that it could be a grumbling appendix, as we call it here in the UK?

    Smiling Politely, can you be more specific as to which quadrant this pain is appearing in?


    As a sufferer of mystery chronic lower left quadrant pain I extend my sympathies to you.  It is very frustrating.

  10. Well done for getting those blood tests done.  It will be interesting to learn the results, do let us know how you get on.

    Re: dealing with anxiety I  found the following website very helpful.


    There is also an excellent book to go with it, At Last a Life.   Obviously, there can be physical reasons we are anxious such as vitamin deficiencies etc as was the case with me but I found this book really helped me figure out what was happening.  It was good to read about other people that had come through it.  My anxiety got so bad at one point I just could not stop my mind racing and could hardly think about anything.  The website and book helped break a cycle.

    Re: depression, this one is good too.


    I remember reading the customer reviews, as I waited for the book and started to implement the changes I could glean from them even before it arrived.    I have bought this for several people who have all been helped by it.

    Cyclinglady is right - walking outside is good.  Also, try to be outside in the morning light as that is apparently very good for you.   

    Keep us posted.





  11. Hi BeckyD.   

    I am so sorry you are having all these problems.

    These issues have changed.  After more than a year of itchy left-sided pain across my ribs and round to my back to the spine, under my left breast, etc, I was so sure was what I had was really serious that I managed to persuade a specialist to do not only another mammogram in January 2015 (we have a history of breast cancer in our family) but also an ultrasound scan.  I was so sure they had overlooked something from mammo of the previous year.  However he found everything to be normal and bless him, told me to go home and have a Gin and Tonic!  That day I drove back from my tests relieved but by the end of the journey I had searing left-sided itchy pain, in both my ribs and hip.   Worse than ever - stress? Bad posture driving?  I am just not sure but it was v. real.  

    I then read up some more on Dr Google and discovered on one obscure site that the left sided itchy pain might be to do with inflammation in the the cartilege in my ribs.   I thought perhaps I should try to at least buy a new bra that gave pretty good support but didn't cut in around my back/ribs at all.  I also decided to buy a more supportive top to wear at night.  I am heavy chested and had read that restricting movement with good support might stop the irritation.

    And guess what -  bit by bit, the itchy pain started to go in my ribs.  Although I should point out that if it had been shingles without the rash which my brother in law doctor thought it was, it was supposed to subside after about a year.  So perhaps that was it instead?  Anyway, it hardly ever comes back now, I am pleased to say.  I never wear a bra that cuts into my chest - after a few hours that can bring the pain back.  

    The hip - well that is odd, too.  I started to see a chiro who identified that I had a very tender sacroiliac joint on the left side.  The pain and itching didn't really go with treatment, however one day I was walking in my home town and I misjudged a step, jarred my left leg and this sharp pain went through my leg and hip and right through me.   I went home to bed with the usual terrible itchy pain in my hip and then guess what, after going to bed for about five hours and sleeping it off, the pain was much better.  And it had more or less gone within a week!

    Around the time I had that mammo in January 2015  I got a new symptom, buzzing in my cheek, right side this time, just for a change, but again it only last about a year.  It has almost gone now!  I treated that myself as the doctor couldn't figure out what it was.   I read that it could be neck issue so tried a rolled towel under the neck, sleeping on the unaffected side when it was playing up - bingo! Started to get better from that point onwards.

    Sorry to go on and on but hopefully you might find something that might help you.

    I really don't know what is wrong with me other than perhaps I have a musculoskeletal problem that exhibits itself as a strange itching/tingling/buzzing/burning. I still have sarcoiliac pain but it seems to wax and wane.  Another auto-immune issue perhaps?

    I take it you have hip and rib pain too?  Do you find it waxes and wanes?  Do ask me more questions if I can help any further.


    PS  I never took any of the suggested medication.   I did find warm baths in Epsom Salts helpful.  I found although I could go to bed feeling like my hip and ribs were on fire, I normally woke up pain free - so I tried to get as much sleep as I could.  And on bad days when I was asked to drive long distances I would try to get out of my commitment, as the pain was often worse after long drives.  I also found topical NSAIDS helpful - I cannot take oral NSAIDS or my stomach burns for days!    

  12. About six months prior to my diagnosis I developed the most awful debilitating anxiety.   Coincidentally my B12 levels were extremely low and I had iron anemia.  These deficiencies were treated with supplementation before my actual diagnosis and I believe it helped tremendously.   Do get your levels checked with your doctor first as if you are deficient you may find supplementing will help.  

    On the other hand - a recent poster discovered they had too much of another B vitamin that caused problems of its own, so make sure you are only supplementing if you need to.

  13. 2 hours ago, cyclinglady said:

    Again, my apologies if I offended anyone.   I am curious about healing.  How do we really know if we are healed and I am not just talking about celiac disease?  Manasota and FlowerQueen are struggling still.  They are gluten-free diet compliant, antibodies are down, but what is making them/us ill still?  

    This is a really interesting topic. 

    I do find it curious that many of my coeliac friends here in the UK never go anywhere near any websites for help - they don't need to - because steering free of gluten has been all they have had to do.  They wouldn't think twice about the possible risks involved in going to a restaurant and ordering an ostensibly gluten free meal.   Any glutening incident might just cause a bit of diarrhea but they will feel off for 24 hours or so and that is it.  

    And yet here we are, the rest of us, still struggling several years on.

    I also wonder if sometimes my own mental outlook has held me back and could be creating more problems.   Feeling unwell and being a hypochondriac is not a good combination:unsure:: the gut-brain connection and all that.


    Thanks for posting the video by the way - perhaps Fasano mentions if stress plays a part.   I look forward to watching it. 



  14. Hi again - I have just caught the beginning of a programme which dealt with food adulteration.  You and Yours, BBC Radio 4. (22 Feb 2016).


    If you are in the UK I think you can listen to it by clicking on the above link.   It starts around 8 minutes in.  It really made me think - the contributors were saying if I remember correctly a cup of hot chocolate (I imagine they are talking about instant) can pass through 31 odd stops in the food supply chain before it reaches the cup.   Now for coeliacs this could cause real problems because presumably if someone wants to tamper with the food somewhere along the line to introduce, say, wheat, as a bulking agent, we are in trouble.   

    I should hasten to add that this broadcast was not aimed at coeliacs but it made me think it is probably another good reason to stick, as far as is possible, to whole foods.  I must admit I don't  - but I think I need to!  

    "Full of sugar and stuff you may have never heard of" - good point fergusminto.


  15. Hello

    I am just wondering if anyone has experience very painful wind/gas?  The reason I ask is I often have lower left quadrant pain (left of umbilicus going down to groin).   I have had two gynecological scans - all is well, except one radiologist saw I had internal varicose veins, suggestive of pelvic congestion, that was overruled by a specialist - and also last week a sigmoidoscopy which showed a very healthy gut.   The only other thing that was remarked was when I was having the earlier scans was that I had a lot of wind!  

    Early in the morning I have no pain but as the day goes on it worsens to the point that on a bad day the pain radiates into my hip.    Often following a BM the pain comes on suddenly and stays for the day.  

    My gastroenterologist thinks it could be IBS or dairy. Yet sometimes it feels almost like gas or the BM is causing strain on internal ligaments, causing the pain.  A chiro told me a couple of years ago that I have inflammation in the sacroiliac joint so perhaps with this, the internal veins, a food intolerance - it is just a perfect storm.   When I do exercise again this pain is triggered.

    I just don't know what tests to ask for next...:unsure:

    Can anyone relate?  Any advice?




  16. Hi - I don't know of any statistics but have just had to have a sigmoidoscopy because I get terrible lower left quadrant pain, near my hip,  which feels like wind that builds up over the day.  My gastroenterologist didn't expect to find anything through this test and he was right - all normal.   He thinks it is either lactose intolerance or IBS, annoying as the pain only started a year after going gluten free.

    I do find dairy affects me but I think other things too, am thinking about trying the fodmap diet.


  17. According to last year's Coeliac UK Food and Drink Directory they both are safe foods for us - I haven't got this year's though.   I do react  if I am glutened but have never had any problem with Creme Eggs - and  I bought some just after Christmas.  If you are anywhere else in the world maybe they change the ingredients but I would say you are fine in the UK..     

  18. Well all I can say is thank you so much for coming back to report - this may help others.

    I have stopped popping vitamins since my last round of tests and it will be interesting to see what 'deficiency' symptoms go away! Seems to me that an in ideal world all of us with these tingling, twitching symptoms etc should have our vitamins tracked - once diagnosed, here in the UK I had to ask to have D and B12 tested.  But maybe it is my B6 that has been the problem all along, like you, and that hasn't been tested.  I think I need to follow this up.

    Thanks again and all the very best.

  19. On 1/3/2016 at 4:24 PM, cristiana said:

     I believe too much B6 can actually cause tingles - someone correct me if I am wrong - so that would be something worth checking too.



    2 hours ago, Akron15 said:

    JAll was normal but the B6. I am toxic! Look up those symptoms & I'm the poster child! It started 10 days into gluten-free diet. Just not sure why. Stopped my multi vitamin & feel the twitches are way less in the past 24+ hours. I just knew this was something I added or took away. B6 is water soluble so I should flush it but I'm not. Why? That's the next round. Thanks Cristiana and everyone else for your replies and eyes to read my freak out a few weeks ago. 

    Hi Akron, I have quoted my comment and the corresponding part of your post as I am just blown away that you found the answer was too much B6, as I suggested  That just shows you what a hypochondriac/Dr Googler I have become, because otherwise how would I have known that? :lol:  I gave up studying human biology when I was sixteen!  

    But seriously, I am glad you have your answer and it will be very interesting to see how the next round goes.   

    Oddly I am about to ask for more B tests as I was taking a lot - thinking does it matter, because they are water soluble? - and then I have recently had a blood test and my haemoglobin is high normal for the fourth successive test.   I'm wondering if too much B12 might be responsible for that but need to look into it more.  My gastro told me to lay off the ferretin, too.  So it seems one can have too much of a good thing.

     Wonder if it might be worth looking at what foodstuffs B6 is in, you might see something obvious?

    Keep us posted if you can, and hope the tingles stop soon.



  20. Just one thought ... if you manage to rule out GI sources of pain, and it isn't muscular skeletal pain referring to the lower abdomen/groin etc, it is worth finding out if you might have pelvic congestion.    I was told by a radiographer that this might be my problem, as she saw a lot of veins on the left hand side when she did a scan, but the gynecologist did not agree. I must admit having read up about it between these appointments I was disappointed that the gynecologist didn't agree as I really thought I had all the symptoms - the fact the pain gets so much worse with sitting all day long was the main reason I thought I had it.  Anyway, something else to consider....

  21. Hi again - don't panic about lactose intolerance as a lot of celiacs (if that is what you have) find it passes after a while gluten-free and the villi heal.  I gave it up for a while and found it helped with the bloating but I missed dairy so much and started to bring it back in.   I have had some relief in the past going lactose light for a while, drinking peppermint tea and taking probiotics (gluten-free).   Before my dx I had been on a couple of hefty courses of antibiotics so I do wonder if I depleted too much of the good bacteria and need to work on getting that right again.  I have been googling IBS forums recently and see that some sufferers have pain after going to the loo that lasts for hours, so maybe it is that too- the empty gut spasms?  I hope you get some answers and let us know how you get on.   And you are right - maybe give the dairy free a couple more weeks to work.  My dairy fast starts on Monday, I couldn't face it this w/e because of two birthday parties!

  22. Hello - strange you should post this as my pain symptoms are identical, except they are all on the left side.   I have left hand sided lower abdomen, left groin, left pelvis and left hip pain, on and off for many months, and have had it again since the autumn.   The pain is worse when I sit down all day or do exercise, particularly walking up slopes or uneven or hard surfaces. I also get pelvic pain/ lower abdominal after a BM - sometimes all day.  It is a dull sore pain.  I go to bed with it but it wears off as I sleep.  I feel it could well be to do with the pelvic muscles not working properly sometimes.  I  also do have a sacroiliac problem and my chiro says pain refers to the lower abdomen from that joint, something worth considering?

    Went to my gynae for ultrasounds at Christmas who saw nothing but a lot of gas!   I saw my gastroenterologist this week and he  thinks dairy might be the culprit behind all this pain and has told me to give it up for three weeks. If that doesn't work he is going to give me a sigmoidoscopy in another three weeks.   I think I will take it, no matter how I feel in six weeks, just for reassurance.

    Anyway, apart from dairy which clearly causes me a lot of wind, he says I could just have IBS too.   He didn't seem unduly worried but I think the rule here in the UK is if you have a pain for 6 weeks, it is worth getting it looked at. 

    I am a celiac and have been gluten-free for 3 years now.  

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