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High calprotectin all tests negative

Posted , 2 users are following.

jenny55563
jenny55563

Hi,

I've had good chats with various people on this forum, I'm hoping there are some people about who are knowledgable in calprotectin tests. Firstly, I have primary hypothyroidism and antibodies. However I appear to have "another auto immune disease" they are switching between RA, Crohns and Sjögren's. I have above 500 calprotectin, terrible gi symptoms, arthritis fatigue itchey eyes repeat uti's etc I have had colonoscopy and pillcam nothing is showing my question is, regardless of RA crohns and Sjögren's where do you think this inflammation is located? Majority of pain is under my ribs and kidney area but I've had an upper ultrasound and it all looks good, responded well to temporary steroids but ive tapered of them, have gastro appointment on 19th any advice greatly appreciated

0 likes, 4 replies

4 Replies

  • jenny55563
    jenny55563

    Posted

    Also lft's good but when I'm really bad I always have a yellow colour on eyelids and lower eyelids but only bloods that show up are raised wbc
  • IndieHannah
    IndieHannah jenny55563

    Posted

    Hi Jenny

    Until yesterday when i joined this forum I had never heard of calprotectin tests and therefore know nothing about them.  However I do appreciate the frustration and confusion created around trying to get a firm diagnosis.

    My experience with Crohn's over the last twenty years has revealed that it has many and varied symptoms that can show up all over the place.  Arthritis is one of them...sore and itchy eyes...terrible fatigue.....but these are are always accompanied with terrible tummy cramps/spasms, uncontrollable diarrhoea (especially at night!), loss of apetite etc.

    The problem with inflammation is that it could be in lots of areas and not restricted to one.  For instance, when I'm in a Crohn's flare there is inflammation in my small bowel (where i suffer the most) but also the inflammation is in my joints with arthritis.  You clearly have an inflammatory problem as you responded well to steroids but as to where it is located.....a mystery!!

    All I would say regarding the upper ultrasound is that this particular examination is very poor for getting clear results of the small bowel.  I had an upper ultrasound a few years ago because I was getting all the symptoms of a severe restriction in the bowel.  The result was clear, I was given steroids....I lost even more weight....unheard of!!  I was sent for a small bowel barium enema and it revealed a serious stricture caused from scarring from years of untreated inflammation!!  I had surgery fairly promptly after that.  The ultrasound is a gentle approach.  An MRI is probably the best test for revealing inflammation in the small bowel.

    When you go for your appointment, be as clear as you can about your symptoms.  And ask about an MRI if you feel that its your small bowel thats the problem.  Maybe keep a journal, or write up some notes for the appointment. Its so easy when you're in there to forget really important things and it's so upsetting afterwards when you remember!

    I hope your appointment goes well......good luck

    • jenny55563
      jenny55563 IndieHannah

      Posted

      Hi, thanks for your response, I had the pillcam test which is a camera you swallow and it goes through your whole small bowel making a video the prep is similar to the colonoscopy and less invasive than an endoscopy, this was done a month after my two month long bout of dioreah and abdominal pains had ended which was great for me but not for the test, however I can be thankful whatever was going on didn't cause any lasting damage though I'm still getting the upper ab pain I can now leave the house. Although the arthritis came back with a vengeance an another kidney infection came along. I'm concidering just asking for any antibody test they can throw at me, to at least narrow down which organ is being naughty as upper abdo has lungs, kidneys, pancreas, liver etc etc I'm not sure if this is something the consultant would concider and I don't want to sound like I'm telling them how to do their jobs
    • IndieHannah
      IndieHannah jenny55563

      Posted

      Good news regarding the pillcam test.....but infuriating that theses tests always happen after the fact!!!

      Have you tried managing your arthritis and infections through your diet??

      Boring I know, and certainly no cure, but looking at dietry habits and making some alterations could help a lot.  If nothing else, it may help you ease some of the symptoms you have whilst the medics try to locate the problem.

      Keep us posted with you progress and take good care.

       

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