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Feeling really low and recurrent symptoms !!

Posted , 5 users are following.

claralou
claralou

I was diagnosed 3 years ago, I was in a mess, got referred to a Dr of Internal medicine who believed I was Celiac. Helpfully he told me to cut Gluten out of my diet, I have a friend who is also Coeliac so knew the drill and stopped eaten gluten imediately. I went from barely being able to get out of bed to 1 week later being able to walk a couple of miles with the dogs. I still wasn't healthy but it was a huge improvement. 3 weeks later he called me back to do a blood test, he actually didn't recognise me as I looked so much better. My test obviously was negative due to me having stopped Gluten, He wanted to give me an endoscpopy but the idea of going back on Gluten & being so ill again just wasn't feesible. He looked at my teeth, I have had them rebuilt around around the gum line as the enamel just went & left brown staining in its place. He looked at the position of my acne scars, added that together with my ADD, Anxiety, Joint Pain, infertility, Bladder Irritation, Kidney Stones,IBS and Lactose intollerence not to mention incredible stomach acid pain and crazy Migraines and decided that his Clinical Decision was in fact that I have Coeliac disease. I moved back to the UK 2 years, stayed as Gluten free as I could, due to strange labelling, I have got glutened a few times and I turn into a grouch, picky & moany, then headachy, flu like joints, sickness, chronic tiredness and eventually give up and go to bed, normally it takes a good 5 days before I start feeling like me again. Now I am strictly GF, stay away from processed foods apart from GF Tesco Bread, and I am getting worse every day, all my symtoms seem to be back... Stomach is killing me, migraines are back, my actual back is killing me, my hips are intensely painful, energy vanished, brain fog, joint pain, memory loss, cant go to work, cant motivate myself and back to running to the bathroom. Everything hurts !! My GP here is testing me for everything, including a Coeliac blood test, isn't that just going to show up as another negative as I don't have Gluten in my diet? Thoughts, support, advice... Please I'll be glad of any!

Thanks

Clare x

1 like, 10 replies

10 Replies

  • MaggieBgood
    MaggieBgood claralou

    Posted

    You poor thing Claralou! I do feel for you. Are you eating lactose? Sometimes Coeliacs can have lactose intolerance too. If you are 100% sure that you are not being contaminated, I would suggest that you go and have yourself properly tested at an NHS hospital (not a health food shop!) by an allergy specialist. It is possible that you have developed another allergy on top of gluten. I do wish you the very best of luck with this, and my heart goes out to you. As a Coeliac myself, I know the absolute misery of having an undiagnosed problem.
  • dianaa
    dianaa claralou

    Posted

    Hi. Just like Maggie says. you might be intolerant not just to gluten and wheat, but as many celiace sufferers to diary products and other things like me barley and oat. We probably never feel better. I was diagnosed 3 years ago. I have been on a strickt diet since, but still have bloated stomach all the time, sometimes cramps and recently even migraines, which I never had im my life. 

    And therefore, I am having colonoscopy and endoscopy tomorrow. Let's see. Have as many tests as possible. Good luck.

    Jana

    • dianaa
      dianaa MaggieBgood

      Posted

      Hi, Maggie.

      Thank you so much.

      The gastro endoscopy went fine.

      However, the colonoscopy was more painful then giving birth to a child.

      I would not go for that ever again.

      Results from biopsies still not back.

      I appreciate your comment.

      Jana

    • MaggieBgood
      MaggieBgood dianaa

      Posted

      My first one was terrible Diana, I was so shocked. I've had others since but ALWAYS asked for sedation. No-one should EVER have a colonoscopy without one.  M
    • dianaa
      dianaa MaggieBgood

      Posted

      Maggie, I had a sedation. Obviously, it was not working with me, as did not the amount of painkillers.

      Thank you  .

      Jana

    • MaggieBgood
      MaggieBgood dianaa

      Posted

      You poor thing. I nearly went into shock with my first one - it was so painful. As you say, worse than labour. Are you small built dianna?  I only ask because I am, and they now use children's endoscopy equipment on me. I have to have an endoscopy every 3 - 5 years so it has turned out to be a big help. Let's hope you don't have to have another one. M 
  • marg04364
    marg04364 claralou

    Posted

    Try supplementing your diet with magnesium. Take as directed.

     

    • dianaa
      dianaa marg04364

      Posted

      Thank you, Maggie.

      No I am a bit overweight since starting gluten free,wheat free, oat and barley free diet, actually.

      However, I always have had the experience that painkillers and sedatives have not worked with me.

      I am maybe to strong. Who knows.

      Oh, I hope that I will never need that colonoscopy ever again.

      It was like a colon rape for 20 minutes.

      The biopsies are still not back. 

      Good for you, that you do not have any problems with the procedure and it helps you.

      I wish you the best.

      Jana

  • antpring
    antpring claralou

    Posted

    I just read somewhere that people with coeliac can also develop another auto immune disease like rheumatoid arthritus??  Not sure what those symptoms are - could look it up.
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