Could I have had coeliac disease for 35 years ?

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I recently visited my GP as I had been feeling incredibly tired & breathless. I had a blood test which showed I was very anaemic.

I am nearly 50 & have suffered from 'IBS' symptoms (diarrhoea, bloating, wind) since I was 15. I've mentioned this on numerous occasions to GPs over the years but they've just told me to calm down, & eat more fibre!

Anyway following this blood test result the GP referred me to a Gastroenterologist who has now considered the possibility of coeliac disease & I had a blood test for this today. If it is positive she said I will have to have an endoscopy to do a biopsy.

My main question is, could I really have had coeliac disease all this time? Surely I would have had More symptoms (apart from wind/diarrhoea) before now?

I've got to wait 3 weeks for blood test result, to begin with.... Is it worth me trying to cut out gluten straight away, to see if it helps? If the test is positive, & I need a biopsy (which I'm really scared of), How soon would I need to re-introduce gluten, & how much?

Really worried about all of this - not about cutting out gluten, but more about why I feel like this & the Tests involved to find out .

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10 Replies

  • Posted

    You can have slight coeliac symptoms for years and then it can trigger fully and get far worse. I had IBS from childhood and then suddenly my symptoms got worse, extreme tiredness, swollen stomach, loss of feeling in my hands and much more. Some people are diagnosed with no symptoms but tiredness seems to be the common symptom, for instance I didn't lose weight and never had diarhea. The thing is to focus on one test at a time but never cut out gluten before you have completed all of the tests as you tests could come out as false negative. The endoscopy isn't bad and well worth it to get proper diagnosis. The worst bit is the medicine the day before but the actual endoscopy really isn't anything to worry about. You need to go through this to know what it is finally then you can deal with the outcome. If its negative you could still cut out gluten to see whether its an intolerance to gluten rather than celiac as this can cause the same external symptoms.
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  • Posted

    There is so little known about the genesis of Coeliac in anyone really. I can remember having a Coeliac attack 35 years ago, but I didn't know it then. I know it now though! Back then, the GP was very dismissive and I found it difficult to get him to understand the severity of the symptoms. I also vividly remember literally crawling up a road with gut pain when I was about 8 years old. I knew instinctively that it was serious, but no-one else took it that way. I was just packed off to bed early. So, my feeling for me is that I was Coeliac way back then, and my immune system got really fed up with it all, and started giving up the ghost. That's when I developed severe anaemia and weight loss. I was diagnosed by an endoscopy (not too bad - I opted for sedation and I'd do that again).

    If you can get one quickly, personally, with what I now know, I would stay on the gluten so that I could get a proper diagnosis. If you cut it out, there's a risk that you'll get a negative result, even if you are Coeliac. Having said that, nothing would make me eat gluten now, because the positive side of not eating it is so incredible, that I wouldn't risk it for anything. I'm a different person, and that's amazing. I'm actually very healthy now, which is priceless.

    If I had to wait a long time for an endoscopy, I don't know what I'd do. Probably pay for one and get it quick, or else ask the doctor how I should manage the wait. I'd also get in touch with Coeliac UK - they are very helpful.

    If you are Coeliac, there is no going back to gluten Nicola, but that's honestly a small price to pay for the benefit you will reap. There's great food in the supermarkets now - it's all do-able. Best of luck with it all.

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  • Posted

    You MUST stay on the gluten until you have had the biopsy or you could end up with a false negative result.

    Unfortunately this is what happens to many people as they try to cut it out (they rarely do manage this without help from The Food Directory from Coeliac UK as it is hidden in so many things!) hence they never get well!

    Stick with it now - it is only another week or two before your are on the way to good health!

    I was in my 40's when diagnosed as a result of a viral infection (caught from my children) related to Epstein Bar virus (one of the glandular fever bugs) which is known to be a trigger. I just never got better after it and had pains all over, fatigue etc. but my GP would not even test my iron levels - which had been low on every blood test I had ever had from my teens! I had iron injections through my pregnancies! Yet no medical person questioned the cause - I was told I was just one of those people who does not absorb iron very well!! Fortunately two years after the virus my husband was transferred to another area where I found a female GP who immediately took a blood test - I was down to transfusion level! - and sent to a Gastroenterologist at Queens in Nottingham immediately. Talking to me for a few minutes he told me he was 95% sure I had Coeliac disease - which I had never heard of until then. He told my I could have been coeliac all my life as the body tries to deal with it - I had never had diahorrea or what are called normal symptoms - although over the last two years I had lost over a stone in weight - without trying! So that was odd for me! And of course I was always taking iron because I was always anaemic - which kept me hovering around the lowest Hb level most of my life.

    So the answer is Yes - you could have been Coeliac without knowing for 35 years. My cousin - who is in her 80's now was diagnosed a couple of years ago - after a stroke and a fall....she didn't feel too good after that and a blood test lead to her diagnosis!

    Many people do not want to have Coeliac disease - an auto-immune condition, not an allergy - but believe me once you are diagnosed properly and are totally on the diet you get your life back! There is so much gluten free food in the Supermarkets these days...I have to try and pass it by as my waist line grows easily now I am fit again! Maggie is right - it is an all or nothing diet or you are wasting your time. A tiny amount of gluten can cause the villi to be damaged in your gut again and must be avoided at all costs. It is so worth it! Hang on in there, and keep eating gluten for now - see Coeliac Org UK website - as this is necessary right up until final diagnosis.

    Once you get the diagnosis you deserve a gluten free treat - try the Chocolate Cake on the Free From section in Tesco! To die for!! smile

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  • Posted

    The biopsy takes a couple of minutes at most - very quick - and they give you a relaxant beforehand....then it is all done! Do not worry - it is worth it for the correct diagnosis! If you are a Coeliac check out locally for your nearest branch of the Society - you will get lots of help from there - Christmas dinners to attend etc...x
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  • Posted

    HI Nichola

    the quick answer to your question is yes you can, my consultant and many others are now saying that the most common symptoms of having CD are no symptoms at all.

    In my case I am now 51 was diagnosed 3 years ago and had the exact same symptoms as you, when I mentioned having the wind issues to my GP ( about 20 years ago) and describing that it felt that there was some kind of bacteria or gas building in my stomach at certain times he said to eat more slowly.

    I have had other symptoms which could be attributed to CD now when I look back, for instance I have been diagnosed with the coeliac skin rash DH, however I must have had this for over 20 years and none of the GP's picked up on it, it was simply an eczema rash and treated as such. I like the others would advise you to get a proper diagnosis, I still haven't felt great since going gf and I think without a proper diagnosis I would not have stuck to the diet. Good luck with it

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  • Posted

    Thanks for your replies - guess I'll just have to sit it out & wait for the results. If it means a 'cure' then the biopsy will be worth it!
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  • Posted

    Believe us all - it will! Most of us found out by accident - from such a variety of reasons! In years gone by no-one had even heard of Coeliac...and the shops certainly didn't have any gluten free products for sale.

    Just a few specialist companies were supplying bread and biscuits on prescription...and you couldn't tell the difference between them and the box they came in most of the time! (My boss got a shock when he worked late one night and decided to pinch some of the biscuits I kept in my desk drawer! Not what he was hoping for!)

    I have met folk with broken bones or ulcers which would not heal - until after they were finally diagnosed Coeliac. When your body stops fighting itself it gets better! Your symptoms...over the years...sound pretty classic. And there is so much good gluten free food available now....it soon gets easy to eat! Join your local Coeliac Group - you will get lots of help from them too - we understand what you are going through.

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  • Posted

    Hi Nicola,

    Likewise I am nearly 50 and recently had a positive blood test & Gastrosophy to confirm Ceoliac disaese for the first time.

    I now believe without doubt I had the condition for a long time but un-diagnosed. I went gluten free after the blood test initially because of the long waiting list for the biopsy, but when I put gluten back in my diet pre the gastrosphy, the reaction was very stark and clear, that gluten was my problem.

    I feel so much better for the first time in 20 years now being gluten free.

    So in answer to your question, yes you could have had the condition for many years, but if you get a positive test, then a strict gluten free diet will improve your lifestyle.

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  • Posted

    So true Will. Having been on the gluten free diet for many years now the reaction if any enters my system by accident is violent and happens within two or three hours - in fact it causes me to vomit (seems my system says OH NO! and doesn't let it get further than my stomach - which must be a good thing!) ....however it continues until I must be totally empty and is an exhausting experience. I never had this before - nor any upset tummy symptoms - until I had been on the diet for a while. My body had become accustomed to gluten over the many years...probably because I had always been a Coeliac ...but that was not a good thing!

    Glad you finally got diagnosed too!

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  • Posted

    Hi Nicola, just wondering how your endoscopy went.  I'm awaiting mine and feel very much the same as you with a very similar presentation and history.  I think I've had my symptoms for at least 28 years. 
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