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Silent Coeliac?

Posted , 4 users are following.

jlh1040
jlh1040

Has anyone been diagnosed with silent coeliac?

I had some blood tests last July for another issue and it came back that I had low calcium, high phosphate and high bone resorption (marker for osteoporosis). Doctor said it was a lab error and got them done again January - same results resorption marker worse though and said it was a lab error. I wouldn't take no for an answer because I want to know what was wrong and why the results would come back out of range. Anyway she said it might be coeliac disease but I said I have none of the symptoms at all but she said you can be a silent coeliac? I got tested for coeliac and my iron levels. I haven't got my coeliac back but my iron is severely low also and most likely will need an iron transfusion.

At the moment I just need an answer. I would be devastated to have coeliac disease but I need more answers than problems right now.

Anyone been diagnosed as a silent coeliac? Are my low calcium and low iron markers for coeliac?

Thanks

0 likes, 6 replies

6 Replies

  • jenny19687
    jenny19687 jlh1040

    Posted

    Hi. I don't know about silent coeliac but have you had your vitamin D tested? It can can cause low calcium do you have any unexplained symptoms? 

    • jlh1040
      jlh1040 jenny19687

      Posted

      I have and my vit d is fine. What kind of unexplained symptoms? I get headaches a lot, dizzy and tired and lately been having heart palpitations and short of breath.

      I don't have any symptoms that relate to usually being coeliac but I have been seeing an Endocrinolgist for a benign pituitary tumour so I put all my symptoms down to that. I just can't let out of range blood tests go

  • jade11650
    jade11650 jlh1040

    Posted

    Hi,

    I have silent coeliac. I went to the doctors for another reason and they decided to do a full blood test and check everything. It came back high reading for coeliac I said no it can't be because I don't have any symptoms and ate gluten/wheat daily! They said the only way to determine was to have an endoscopy I was petrified but wondered if I was causing damage to my intestine without knowing so I had it done and it showed that my villi was blunt and biopsies confirmed coeliac disease I was still in denial as had never had symptoms after eating foods. I had an endoscopy done 1 year later after being on a gluten/wheat free diet and the damage has now repaired! Crazy I worry that I could get "glutened" whilst out for a meal and would never know! I don't feel any different I don't think? I have low iron just like I had before coeliac (mine is low iron stores though due to heavy periods)

    I hope you get answers!

    • jlh1040
      jlh1040 jade11650

      Posted

      Hi!

      Okay so it's not a strange concept then haha. I know there is no bad or worse form of coeliac but I thought the same thing. If I have coeliac how long have I been damaging my intestine without knowing and how would I know if I eat gluten if I don't get a reaction?! It seems so risky!

      The iron is what gets me. I have no reason to be iron deficient because I don't have heavy periods so it has to be something else going on inside seeing as my calcium is low and I supposedly have the bones of a menopausal lady! Do they know how long you had been coeliac without knowing? I am glad the damage was repaired within a year tho.

      I have been extremely fatigued and dizzy for a long time but I can probably put that down to the low iron now.

    • jade11650
      jade11650 jlh1040

      Posted

      I know it is really weird. It was very hard for me to come to terms with because naturally if you were eating gluten/wheat and suffered consquences then you would be glad you had a confirmation of coeliac and happily stop eating it to get rid of your symptoms but for me to have no symptoms i was thinking "no why should i stop it" but then when the results all went towards it I had to accept it and luckily the damage has repaired. The consultant said they think I had just started to get it and that if i left it i would have began to show symptoms and suffer and then have to get the diagnosis after so they are saying they caught it early. My uncle has it and he was in a lot of pain when he ate wheat/gluten and he also knows when he has been glutened now, it is strange! I also apparently have two bacterias growing around my intestine but i dont get any symptoms for them (usually bloating and cramps) so they are not treating it but have put it on my file in case i get symptoms in future - so weird - luckily the bacteria if left doesnt cause any damage only symptoms so it is ok to leave whereas coeliac isnt ok. i had a bone scan and that was fine x

    • jlh1040
      jlh1040 jade11650

      Posted

      Oh wow that's good then! In a way haha. Do you have to have regular check ups? Do they check your iron etc or do they just let you live your life now?

      I requested a bone density scan but I wasn't going to get it done till I get these results back. I was just super worried as my bone marker was supposed to be <50 and it was 62 last year now it's 80. So I know somethings wrong no one is sure what though.

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