Anyone had a capsule endoscopy? Pls tell me everything; benefits, limitations, etc

Hi all

I find the thyroid forum far more active than the coeliac forum hence posting here

It seems i cannot have a colonoscopy and gastroscopy as i cannot tolerate fentanyl, midazolam or the spray, each of these is contra-indicated with various conditions.

I know biopsies cannot be taken so i will never get my definitive diagnosis of coeliac, but i feel there is more going on than coeliac. So is it worth having this?

I know it won't give all the answers, but since i cannot face a gluten challenge at this point (only just noticing tiny improvement in absorption, etc) and the drugs they will use make me ill for 3 months, should i have this procedure?

Background: undiagnosed/misdiagnosed crippling gut issues since 2006. Somewhat better since going gluten-free in aug 12, but still have gut issues. Also pernicious anaemia, Hashimoto's, suspected pancreatic exocrine insufficiency, neutropaenia.

I pretty much manage my health myself due to consisten nhs failures. This gastro referral is a long time coming after mistakes made in 09, but it's almost too late in a way as it is so much harder now for me to have these procedures which should have been done in 09

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  • ...quite a dilemma for you. 40 years ago I was hospitalized for six months with ileo-caecal TB - lots of surgery and then Crohns as well. Ghastly details omitted ! Further surgery followed with various complications. 30 years ago was the last gut op'. 15 years ago the last real problem with Crohns. Discharged by the medics as they thought they were treating the patient and not the disease !!

    Recently had a colonoscopy and the Crohns is still around. As they could only see the large bowel they would like me to swallow the capsule - complete with camera but they have decided it is too risky. That's to investigate the small bowel. Greek docs always give you the bottom line !!....which I like. So what if it gets stuck ?....and of course they tell you ! Have decided to leave well alone and am also rejecting the drugs. Have a feeling I am healing slowly.

    I am sure that I have read recently about new tests for Coeliac - but sadly cannot remember where ! Think it was saying that the anti-body blood test was not conclusive.

    Have you read the book 'Gut and Psychology Syndrome " by Dr Natasha Campbell McBride. Also drmyhill.co.uk is an excellent place to learn about guts and their mis-behaviour ! I have learnt over the years by trial and error to adapt without any drugs....apart from the T3 I now take. Do not forget that the brain has the highest amount of T3 receptors followed by the gut....so when there is not enought T3 to go around then things start to go wrong.

    If you think there is anything else I can contribute then please do ask..........

    Hope you soon feel stronger and well...x

  • Thanks for your input. I am happy enough to manage my coeliac/ibd myself = the way i manage all my chronic diseases myself due to nhs failures.

    It's just that after so long i am now being offered tests i should have had years ago, If i say no now i will never get them offered again.

    Saying that, i will not consent to use of drugs that will make me ill for 3 months - i am self sufficient so must be well enough to work.

    I cannot see at this point that the capsule endoscopy will add value,

    I won't have it for the sake of having it

    I don't have much time to make my mind up. Yes i know the TGA is inconclusive; try telling the nhs that!

  • Hi Lots. It is radio active isotope, but only for motility.Very safe, used for years. It will not show Pancreas problems of any sort. For this you need a special type of gastroscopy, done by a radiologist, also Faecal Elastase. Specific stool test. You also need to be under a Hepatologist ( liver, gall bladder and pancreas, at a large teaching hospital. Sorry rush but I did want to reply briefly.

    Best wishes,

    Jackie

  • I should also be under a haematologist, etc for other issues but as anyone living in london will know, it is virtually impossible to get specialist referrals for anything on the nhs. I have been fighting for several years to get my current referrals and had to move gps 3 times in the process to find some one who would refer me.

    Remember they get bonuses for not referring you - and believe me, they want those bonuses.

    They also get funding points for you merely having diseases, but not for actually treating your diseases, ie money for nothing, so no incentive to provide service. I confirmed this all via a FOI request

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