Should I have an endoscopy?

Hi everyone,

I'm new to the community and pretty scared and confused about having Coeliac Disease. If you could give any advice that would be great.

I had blood tests in November 2012 to check my liver and kidney function, to check my iron levels and to check for thyroid problems and Coeliac Disease. I have anaemia and tested positive for coeliacs but all my other results were normal.

I have an endoscopy next week that I haven't wanted ever since my doctor referred me (I'm prone to panic attacks). Both my Dad and my brother are Coeliacs but their blood test results were false negatives.

With all this in mind, is it worth having the endoscopy? Also, how bad is it?

My symptoms are really bad at the moment and I'd just like to switch to a gluten free diet as soon as possible.

Thank you.

12 Replies

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  • I'm sorry to hear you're having difficulties, but at least you know what the problem is now and can set about your recovery.

    I really sympathise with your feelings regarding the biopsy, as when I was in your position, I felt so ill that I decided to go gluten-free immediately, rather than wait for the biopsy.

    The advantages of having a biopsy is that you will, assuming the results are positive, have a definite diagnosis of coeliac disease. This will entitle you to receive certain gluten-free foods on prescription and will enable you to be referred to a dietician who will help you with your new diet. It should also ensure that you have regular follow-ups to check that your antibody levels are returning to normal.

    That being said, it is possible for a biopsy to be falsely negative, and you may not feel the need to be 'officially' diagnosed, given that you have already got a positive blood test result. Knowing that whether you have coeliac desease or another form of gluten-intolerance, the treatment is the same (ie a gluten-free diet), you may not wish to put yourself through a medical procedure just for the sake of it.

    As I said, I decided not to go for the biopsy, so I can't tell you what the experience would be like. All I can say is that if I were you, I would do what felt right for me, not what others wanted or expected.

    Whatever course of action you decide to take, I wish you the best of luck.

  • Hi JellyB, Not an easy time for you, but my advice is to have the endoscopy as it`s the gold standard way of confirming Coeliac disease.

    My first endoscopy was awful (I had a spray anaesthetic). 6 months on and I was due my second. I wanted to have the option of having a stronger semi knock-out anaesthetic after my first experience. The nurse taking my details listened to my story of my first experience, then said she still recommended I have the spray, but to ask for a `lot` of spray on the back of my throat. She was so persuasive I agreed. And guess what, hardly felt a thing!

    It turned out my first was done by the consultant and the second by a nurse! So I`d recommend chatting to the support staff, tell them your fears and see what they recommend.

    Hope this helps!

    Oh and welcome to our community.

  • Thank you both for replying. I know I should go but I spook easily. I think I'll be sedated if I do go otherwise I worry I won't breathe properly. It's such a shame that the support from the NHS isn't there if you choose not to have the biopsy. I'm supposed to be having my endoscopy at Bedford Hospital, does anyone have any experience of the endoscopy unit there?

  • Hi JellyB, if you tell the consultant that you are stressed about the endoscopy they will give you a stronger local anaesthetic which will sedate you for the procedure, which is 100% worth having to confirm CD in my opinion. And I hate being poked and prodded about so I was sedated for it.

    Good luck and the NHS is great once you're in the system, so just tell them that you want to be sedated. And don't give in to your fears when you've got this close.

    You'll be all right and feel free to let us know how you get on.

    That's my 2p's worth

  • I understand why you are concerned. It's a medical procedure, and no medical procedure is entirely risk free. I had to make that decision myself lately, and went for my endoscopy/biopsy about 10 days ago.

    I just had the throat spray, they sprayed quite a bit of it around and told me to gargle with it to make sure it covered every area at the back of my throat. I was very nervous, so the nurse had written on my form "try without sedation" to keep my options open. In fact, I didn't feel much at all really... I just coughed a bit at first because it is odd to swallow when you can't feel your throat. The procedure didn't last that long and I was a little tender afterwards but nothing serious and that was only for a few days.

    If you do opt for the sedation then there is longer recovery time. You have to take someone with you to drive you home, and to look after you for 24 hours. And it gives you more to recover from. I was very glad I could do it without. Apparently you still feel it with sedation, just don't remember things afterwards.

    My mum's experience was not so good as mine. Part of her throat didn't receive the spray somehow, and she was coughing throughout (because she had a cold) which was painful with a tube in her throat. She didn't tell me about that until after I had mine done!

    A week is not so long, and it depends how important it is to you to get a diagnosis. You have access to the treatment (a gluten free diet) anyway, although a formal diagnosis seems to result in more attentive medical aftercare. However, also consider whether you might ever need that diagnosis in the future - it's much harder to go back on gluten to get a diagnosis later on, because then you are actively having to make yourself sick enough to get a positive result, and that is just awful.

  • Definitely ask for the semi knock out anaesthetic if you are prone to panic. You won't even know you've had the endoscopy! I've had a few, one with just the throat spray, so I know the difference. Recovery takes longer because the sedative gives you a stinky headache for a few days, but very much worth it

  • I went for sedation and was very happy, no only did I not feel anything, I have no memory of the procedure which suited me nicely.

  • Sedation and endoscopy took only 1.5 hours then went on the London eye straight after, yes a bit groggy but a totally happy feeling. We are all different and react differently and spray or out for the count is the choice we have to make to get it done.

    Good luck for next week.

  • Did anyone talk during the procedure if they'd been sedated? I'm worried I'll say something embarrassing or try and pull the endoscope out. What's your follow up care been like?

  • Hi JellyB

    I have had this carried out twice once through my mouth and then the other end when I was diagnosed with diverticular disease. Both times without any anesthetic . I would say it is uncomfortable but not really painful. Try not to worry too much and as already suggested speak with the staff at the hospital and I am sure they will be able to give you something to take the edge off.

    Good luck

  • Hi JellyB

    I would definitely recommend sedation, my father had just the throat spray and after his experience recommended that I definitely had sedation. So glad I did, I brought my partner along with me to bring me home safely, they did try and convince me just to go for the throat spray whilst I was on the table but I was adamant. It tasted rank of bananas and felt like my tongue was swollen up huge. Didn't remember a thing once sedated, but found it hilarious I was offered a cup of tea and digestive biscuits an hour after i woke..was so hard to continue eating gluten up until the procedure but once you have it done and a confirmed diagnosis then you will get the help and support you need to recover and follow up checks on your progress!

    Try not to worry

    :0)

  • JellyB, here's another bunch of responses that Mikes received when he was about to have an endoscopy last Aug; think the majority view is go for the sedation :-)

    glutenfreeguerrillas.health...

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