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mystery illness for 5 years

Posted , 4 users are following.

joanna36230
joanna36230

Hello, can anyone tell me if I should ask my GP about Celiac disease as I was diagnosed with IBS in my early twenties (now 40) but since 35 have suffered from chronic fatigue and flu like symptoms, feeling hot, headaches, no energy, weird sweats at night dizzy, severe muscle pain in my back and poor memory and concentration.

I was diagnosed with low vitamin D (15) around 4/5 weeks ago and am taking 1600 iu per day px by my GP but I am feeling worse and worse every day. She has tested me for pretty much everything although she didn't mention celiac disease...

I am always really really bloated my tummy looks huge, like I am 6 mths pregnant. Do you think it is worth mentioning and asking for the test as she is now going down the endocrinology route even though all the tests for thyroid etc came back normal.

Any one else have those symptoms?

Thanks

1 like, 11 replies

11 Replies

  • natcann
    natcann joanna36230

    Posted

    Hi there. I had exactly all those symptoms and was ill for years. I ended up weighing 7 stone. I was diagnosed in 1998 and since going GF symptoms mostly disappeared including skin feeling permanantly itchy and dermatitis herpetiformis in places.. I did not have many gut problems but felt constantly nauseous. I had joint and musdle pain, and what my family called my 'fogs' where I was so exhausted and dizzy that I had to lie down. I also had bad headaches. I was first diagnosed as having ME but after a while a new GP advised me to be tested for Coeliac disease as he said he recognised my symptoms from a previous patient. Tests were positive and it was fantastic how quickly I recovered and have managed it well since then. Do not stop eating gluten until you have the tests, otherwise you may get false negative. I can remember when I was first diagnosed all my family were so worried and sorry for me and I was elated because I had an answer. I hope things work out for you.
  • joanna36230
    joanna36230

    Posted

    Hi Natcann, thank you so much.  I will ask my GP,it is funny how I have been told I have IBS, but none of the medicaitons such as pepper  mint oil ever work on me. he is calling me tomorror so I will ask her then. I am off work at the moment as too ill to work. Oh I have nausea too and constant  headaches, and sometimes itchy skin.
  • natcann
    natcann joanna36230

    Posted

    Something that really helped me before I knew about GF was combination eating like the Hays diet. Basically you don't mix meat with carbs. You can research it online. I still eat this way today even though I am GF. Good luck Do let us know how you get on.
  • MaggieBgood
    MaggieBgood joanna36230

    Posted

    Yep.....it took me a long time to find out why I was always bloated, ill, grey skin, weight loss (in my case - it can go the other way with some people). Ask specifically for a blood test for Coeliac disease. It sounds like it may possibly be your answer.  Good luck.
  • gillmm
    gillmm joanna36230

    Posted

    You have nothing to lose by asking for the test. Make sure you have plenty of gluten in your diet for about 6 weeks before the test or it won't work.

    It was found recently that 1 in 100 of the population have CD, but most are undiagnosed, partly because previously it was thought to be rare, and so some GPs are not properly trained on the subject, so do not think to test for it.

    It has many diifferent symptoms, which are basically cause by not absorbing nutrients, and in small children (my son was 2 yrs old) it can cause swollen gut and stick limbs like a famine victim, but I don't know whether this is also the case in adults.

    For more info on the numerous symptoms, look at teh Coeliac UK website!

     

  • exdancer
    exdancer joanna36230

    Posted

    Have you heard anything yet Joanna?  If your GP has agreed to take some bloods - do remember to keep eateing gluten won't you - then continue eating it until your gastroscopy.  Just a few more weeks of feeling like sh1t then you can start the rest of your life!

     

    • joanna36230
      joanna36230 exdancer

      Posted

      Hi ya. the test was negative... However do you remember me saying I had very low vitamin D? well apparently it can cause all the symptoms I have had if left untreated for long enough... aching bones and muscles, insomnia, nausea, depression, weight gain, feeling too hot and sweaty etc etc. I have doubled my dose as I don't think the GP was advising me to take enough, and it can take months to put right. I will keep you posted!
    • exdancer
      exdancer joanna36230

      Posted

      Good for you, upping the vit D - its not toxic in any way is it, like vit A?  Was it just the blood test that was negative, or have you had your gastroscopy as well?  If the gastro was negative too then it would appear you do not in fact suffer from coeliac disease - but you DO need to have the camera down your throat procedure to be truly sure (and you'll need to keep eating gluten until after that or you'll get a false negative - but you must be tired of hearing me bang on about that).  If you haven't been offered the endoscopy/gastroscopy then it sounds like your GP is trying to cut down his referrals so you might have to insist.  It s not the most pleasant experience in life but there's many a worse, and not as embarassing as a smear test, so grit your teeth and go for it.

      Personally,  if it were me and I'd had both a bloodtest and endoscopy prove negative, I'd give a gluten free diet a 'go' for a month or so anyway and see if I felt better .........

      Good luck to you whatever the outcome!  There is a good forum called the coeliac, DH and gluten free message board - which is a  forum much like this one (google it, its about 4 choices 'down') its with boardhost, and it is full of good advice and tips, and we have a good laugh or two as well!

       

    • gillmm
      gillmm exdancer

      Posted

      erm.... you need to check this - vit D is fat soluble and when I did biology many years ago - it was the fat soluble ones which could be toxic, i.e. A D E and K. So check with GP or pharmcist if you are doubling dose.

      (The water soluble ones, B and C, you can take loads and it just gets excreted in urine, whereas fat is stored.)

      However if you are low in vit D it's probably not going to be a problem! smile  Make sure you get plenty of sunshine smile !

       

    • exdancer
      exdancer gillmm

      Posted

      I worded that badly - what I was doing was asking the question - was she sure it wasn't toxic - not stating the fact that its not (cos I don't know, I just had the feeling that it might be).   Even THAT sounds double dutch!

       

  • exdancer
    exdancer joanna36230

    Posted

    I don't know where that 'smiley' came from - I didn't even know we had the option of smilies!

     

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