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Coeliac - lifetime illness?

Posted , 5 users are following.

ruth52973
ruth52973

Hi there, I am a 22F, I have been feeling very off for past two weeks and dont know what is wrong. Have been to a doctor who checked routine bloods and came back normal. She told me I am too stresd at work and sent me off however I have been at same job for past two years. I feel v.weak, fatigued like I am nearing a colapse (even though I havent). I could sleep all day if I could however this has been normal for me all my life, I have also always suffered with a mix of digestive problems. Just wondering if it could be coeliac, and if so is it normal to get worsened symptoms as you grow older? The past two weeks every task for me has been a struggle, even siting in a restaraunt was too much for me. I am doubting my ability to do any task i was able for before, but this is only of the last two weeks. I bought a home test kit and very carefully followed instructions - test came negetive, can these tests actualy show false negetives? I have stayed away from gluten/wheat products for the last 3 days and do not feel better, if i was coeliac surely I would feel better? Any opinions would be great.

1 like, 10 replies

10 Replies

  • victoria04174
    victoria04174 ruth52973

    Posted

    hi Ruth,

    the only way to know for sure is to go back to the Drs and have another blood test (make sure they're testing for coeliac)

    And make sure you're eating plenty of gluten in the weeks before otherwise the test could come back negative.

     

    • ruth52973
      ruth52973 victoria04174

      Posted

      Thanks Victoria, I am going back to doctor Wednesday do you know if they test for same thing as the home kit? Afraid to eat gluten as symptoms of fatigue are so severe but I guess it must be done.
  • MaggieBgood
    MaggieBgood ruth52973

    Posted

    Hi there Ruth

    When you did your home test, had you already stopped eating gluten? This is important, because if you had, you could possibly get a false result. Same goes for when the doc did your blood test. My experience was that as I got older, my symptoms got worse....to the point where it became impossible to work. I remember being at the hairdresser's once, and I couldn't lift my head up from the sink - they had to help lift it. By that time though, my weight has rapidly decreased and I had 'the runs' all the time. They didn't have a blood test then (which it seems to me, from what I've read on this forum, quite often seem to give a false negative anyway) and so I was referred for a colonoscopy. That resulted in a clear, unequivable diagnosis of Coeliac Disease. Do get in touch with Coeliac UK - they are great and they will steer you in the right direction. I do wish you well.

    • ruth52973
      ruth52973 MaggieBgood

      Posted

      Hi Maggie, I stopped eating gluten 3 days ago. To cut short i was on holiday in Paris got back yesterday, I spent half of it stuck in hotel room because I was so weak. It only occurred to me about coeliac because I was having a large amount of bread/croisants/rolls etc. I stumbled on coeliac when I googled my symptoms. I took the home test today. My doctor did not check for coeliac. My digestive symptoms have improved but not my fatigue. I have started taking gluten free vitamims and minerals today. Thank you for your story Maggie.
  • kaitlyn_82138
    kaitlyn_82138 ruth52973

    Posted

    Hmm that's really weird ! Maybe you're just having an allergic reaction to something that you're eating? I don't know th symptoms that well of what you're describing but, maybe you're lactose intolerant ? Lots of people think they have celiac disease and they're really lacose intolerant. It's very very strange. I hope you figure it out and get well soon! (:
  • kaitlyn_82138
    kaitlyn_82138 ruth52973

    Posted

    Hmm that's really weird ! Maybe you're just having an allergic reaction to something that you're eating? I don't know th symptoms that well of what you're describing but, maybe you're lactose intolerant ? Lots of people think they have celiac disease and they're really lacose intolerant. It's very very strange. I hope you figure it out and get well soon! (:
  • MaggieBgood
    MaggieBgood ruth52973

    Posted

    Ruth, do make sure that you ask specifically for a Coeliac blood test and that you eat gluten for a while before you have that test. That's really hard, I know, because if you feel better without gluten, you won't want to eat it. BUT you have to, to get an accurate reading. You won't have antibodies in the blood if you haven't been eating it - and that is the indicator.
  • FA54321
    FA54321 ruth52973

    Posted

    You don't feel better straight away when you give up gluten and wheat, so 3 days is not very long. I went through a detox phase initially, and it took quite a while before I started to improve. 

    Blood tests are unreliable for coeliac disease and you can get false negatives. You need a biopsy to really find out if you gave Coeliacs disease, so if you intend having one done don't give up eating wheat and gluten up just yet, otherwise you will get another negative result.

    As for symptoms getting worse, everyone is different but speaking from experience, mine got worse as I got older. My symptoms were quite extreme, when I got my diagnosis - one was severe malnutrition.

    I think you should see a doctor! 

    • ruth52973
      ruth52973 FA54321

      Posted

      Thanks Fiona, from reading other stories I just asumd you feel better immediately after cutting gluten/wheat which made me question it, its reasuring to hear it may take some time. Also sudden onset of symptoms within last two weeks was strange. I will be following up with doc as my body is not right hopefuly wil get answers.
  • aveline
    aveline ruth52973

    Posted

    You didn't say what the routine bloods include, so I would guess that your iron levels seem okay.  My son has Coeliac and while my blood results were normal, my doctor sent me to a GI specialist for endoscopy/biopsy as my vitamin b12 levels were low. In healthy people with a typical diet, b12 should be within a normal range, since it's stored in the body and found in all types of animal food (meat, dairy, eggs, seafood....).

    While in France, were you maybe not consuming as much b12? You could have been already low and this further depleted your stores.  Low B12 may or may not mean Pernicious Anemia, but it will knock you on your keester and cause the exhaustion you describe.  Of course, Coeliac can do that, too - and all sorts of absorption problems can cause all sorts of trouble...  

    No, three days of no wheat/gluten products wouldn't be enough to feel better if you do have CD.  So much as a crumb can make someone with CD sick. sad  My son was only six years old at diagnosis and it took months of strict gluten avoidance to really see a difference. 

    Please see the dr. again (or another one?) and have a review of your blood work and new tests run. I had no idea my wide-ranging symptoms could all be B12 related! 

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