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How to get tested/diagnosed?

Hello forum, I hope it’s ok to post this. I have struggled with IBS for about 15 years and in the past few years it was under control and I lived a pretty normal life. I was given a colonoscopy and endoscopy about 7 years ago because I had other health issues including weight loss but I did not really have issues with my stomach then, certainly not badly. I work full time and have six children so I am very busy but always coped well under stress. In summer I suddenly started to have issues with my stomach again, urgently needing the toilet, having to suddenly run to go, upset stomach etc. I cut out dairy after I was diagnosed as intolerant but it didn’t make much difference. I started trying to go to the gym more to see if that would help. It then became worse so I went to the doctor explaining how anxious I felt about my stomach. She diagnosed me with some antidepressants which were very harsh on my stomach and made things much worse so I stopped them. It’s now become a battle to be taken seriously and my doctor seems convinced this is all in my head/due to stressful lifestyle. The only way I can survive at work is by not eating, I don’t eat all day and sometimes I still need to urgently run to the toilet. I have lost my appetite, feel sick often, have joint pain and am very tired. I have lost nearly a stone and I was a healthy weight to start with. At my insistence blood tests were done and I was informed I had low neutrophils but that was also dismissed as just my body. Currently been referred to a dietician and to have cortisol levels tested. I have given up now and am going to a private gp tomorrow (I’m in the U.K.). I’m at the end of my tether and don’t want to do anything fun that involves being in the car even for a short while, worried about going anywhere there is no toilet or I don’t know the toilet. I’m just miserable. Anyway, sorry this has ended up a bit of long rant but can I insist on being referred back to gastro? If I was negative in the past for IBD does that mean I can’t have it now? I’m desperate for answers as working is becoming near impossible and I can’t afford to lose much more weight. Thanks for taking the time to read this.

  1. Hi ,

    I am so sorry you are experiencing this! I am from the USA so I am not familiar with how healthcare works in the UK. I would definitely see a Gastroenterologist as soon as possible and ask for a colonoscopy. If nothing abnormal shows in those tests then I would ask for a capsule endoscopy.

    In terms of your energy levels, have they checked your iron and red blood cell count? You sound anemic. Also, perhaps try taking a probiotic daily to help rebuild the good flora in your intestines.

    I hope this helps! Feel free to message me whenever!

    Always dancing,
    Elizabeth (team member)

    1. Thank you so much Elizabeth. I went to a private doctor today who was very concerned and is referring me to gastro ASAP. She is also quite concerned about the joint pain so I’ve to let her know what tests I get from other gp referral.

      I believe I’ve been tested for anemia and am ok. I have been taking some probiotics that are in liquid and meant to very good for ibs and have noticed a little bit of a difference so will keep taking them 😀

      Thanks so much for your response. This journey can be so lonely

      1. Okay good! So glad you are seeing a doctor soon. Definitely keep up with the probiotics.

        Yes, this journey can be so lonely and that's why we are here for you to offer support! Never feel like you have to go through this alone.

        Good luck with your appointments, and I hope you find answers soon!

        Always dancing,
        Elizabeth (team member)

    2. Thank you for your kindness Elizabeth. I saw a private gp who was very concerned about the weight loss and joint pain. She is referring me to a gastro. I’m also being tested for addison’s as a direct family member has it. We have lots of autoimmune conditions in the family.

      I also had some further blood tests done to recheck neutrophils and my blood pressure which does drop when I stand causing the dizziness I’ve been feeling at times. Feel like there are more questions than answers now but hopefully will get on a path to diagnosis soon! Thanks again for your kindness in replying and have a Merry Christmas.

      1. Sorry you are experiencing all these symptoms. But, yes, definitely, you can at first test negative for IBD but later test positive for it. In my case, it took years to get my diagnosis of Crohn's disease. I hope you figure it out and feel better.

        Matt (Team Member)

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