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What made you get tested?

Posted , 5 users are following.

nicky65646
nicky65646

hi

i am quite convinced I may have celiac. I am thinking about doing a home test to start with to give me the confidence to go to the docs if positive, as I feel like they always like to fob you off with excuses.

First I have been to the docs so many times complaining of fatigue and low energy and each time they test its anaemia and vitamin d deficiency, anaemia due to heavy periods, but I have been on and off iron for about ten years now, it's never seems to end. Anyway that was that. Then a couple of years ago I. Went to the docs complaining of severe cramps and pain during intercourse, 'it must be endometriosis' they said, no diagnosis just a guess. I accepted that and carried on enduring the pain, and still do today, as I didn't want to use birth control, which they say calms the symptoms, as we were hoping to try for another baby. I suffer with constipation a LOT - no diarrhoea tho! My hands and feet go numb quite a lot, mainly at night time, I feel quite down a lot (I put that down to the anaemia) and lastly, I have just totally skipped a period which has never happened before, and has obviously happened for a reason,,,,and I am 100% not pregnant, so when I sat and put it all together, along with Google of course :-/ celiac disease is what I came up with. 

does this sound like celiac to you? What were your symptoms? What made you get tested? 

Thanks x

1 like, 23 replies

23 Replies

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  • nicky65646
    nicky65646

    Posted

    Well, i just did the home test and it was definitely negative. I have such mixed emotions, I'm glad it's negative but at the same time I'm so gutted that I've still got these horrible symptoms with no answers. The doc is ringing me tomorrow so I will see what he says x
  • paul76280
    paul76280 nicky65646

    Posted

    Don't know how accurate those home tests are, Nicky.

    Whatever the accuracy is, you really need to kep on badgering your doctor until you get  your symptoms sorted. Don't be fobbed off. Insist on being referred to a consultant and keep on until you get sorted. There is no reason why you need to put up with constantly feeling so awful.

  • ellymay87
    ellymay87 nicky65646

    Posted

    I agree with Paul make sure you push for some answers Nicky! X

    I've found a nice bread Paul..the Newburn bakehouse one by Warburtons is quite good..just a little pricey!

    Everywhere seems to be getting alot better with Gluten Free ranges now which is a bonus ☺

  • cericruz45
    cericruz45 nicky65646

    Posted

    Hi Nikki, As i understand the only way to be diagnosed is with a biopsy, please dont waste your money on home testing kits, also please try not to diagnose yourself via google. Honestly, you could end up with anything.  My suggestion would be, if you are feeling lously after eating cookies, dont eat them! Ive had DH/ CD all my life, its miserable.  I dont usually follow a GF diet as even when I do i have still needed my medication.  Doctors are usually quite defensive when you go to them after self diagnosing yourself from the internet (trust me I;m a nurse) Go to him with information about yourself and how you are feeling and when you are feeling it. As some others have said keep a diary of when things are worse.   Request to see a gastroenterologist as you have had the all clear from Gynae. I really hope you dont have it, and wish you luck with any furure diagnoses. 
    • nicky65646
      nicky65646 cericruz45

      Posted

      hi, thankyou for your advice. i totally get what youre saying, you just get so desperate for answers you resort to google and end up diagnosing yourself with everything lol i will discuss with my doc tomorrow and see what he thinks x
  • Dani21397
    Dani21397 nicky65646

    Posted

    Hi Nicky,

    I have Celiac and it was a long bloody process to find out l exactly what I had! I don't recommend home tests because they don't work as well as blood tests do not show it.

    The only thing that showed it up for me was an endoscopy and a colonoscopy where they took loads of biopsies as they wanted to rule out anything else! You do have to eat gluten two weeks prior to the procedures but tiny amounts only so it shouldn't make you unwell!

    The symptoms I had were constant bloating, stomach pains, fatigue and lack of energy, diarroeah constantly! As well as depression and anxiety! I was put on tablets that made me worse and then onto other ones which have made me feel even worse than I could imagine! It wasn't until o was diagnosed and changed my diet that I started feeling so much better and all symptoms have dissapeared! I really hope you find out soon what it is because the sooner you find out the less damage you cause to your body! I never understood celiac until I got diagnosed and it can seriously damage your intestines as well as your bowel and cause lots of complications so I really would pressure your doctor into these procedures! I really hope you find out what it is soon and if I can help in any way I'm more than happy to smile xx

    • nicky65646
      nicky65646 Dani21397

      Posted

      thankyou dani.

      been to docs today and iron level, iron stores and vit d still low, which is y im fatigued and low energy, and she jusy prescribed buscapan for the pain and cramping. all the other symptons shetold me to keep an eye on !

      x

  • paul76280
    paul76280 nicky65646

    Posted

    Nicky

    You are entitled to ask for a second opinion.

    I suggest that you do that.

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