Coeliac Diagnosis

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Hi,

ive just had my biopsy results back from my gastroscopy and they have confirmed coeliac ;( feel so emotional right now as I don't have any symptoms at all. I literally had another problem so the doctor did a thorough blood test to rule everything out and then coeliac came back positive and I was being sent for gastroscopy! 

I feel that if I had pain when eating wheat/gluten then of course this diagnosis would be the answer to my problems in order to stop the pain but I don't have symptoms so even more of a shock to me and I'm finding it all a bit overwhelming - sounds silly but I feel as though all the foods I love have gone to heaven and never thought that the thought of not eating bread would make me cry! (Gluten bread from the shop does not compare) 

i am am trying to be positive and I am sure in time I will get used to it all.

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8 Replies

  • Posted

    Hi

    My story was exactly the same, went to my GP for something unrelated and the blood results came back,,,, then the road to coeliac started

    10/10 to my GP for being in the ball and the thought of having to change 'my life' felt like an added problem but to be honest now I'm so grateful

    The amount of times I've said 'I didn't realise that was because of coeliac are too many to count

    My love was bread and butter but now only a year down the road and my whole attitude has changed, I sometime think I'd love some bread or a sandwich but that soon goes - exactly like giving up smoking, it does you harm and you feel better without it so why bother

    I feel 100 times better and that was without knowing I wasn't well 😀

    Your taste and choices change and they soon become the norm so you don't have to think about it. I've had a week of not feeling 'right' recently. Tearful, no energy and low mood and tracking back it was a basted chicken I'd had some of earlier in the week. That's how I would've been feeling for many years of my life, the difference now is that I can take control and do something about it now by putting what I eat in check

    The positives far out way the negatives, all the best you'll soon see a difference, a difference you probably don't think is necessary at the moment but give it a go and you'll be surprised, I'm sure 👍🏻

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  • Posted

    I can only reiterate what Manicmatron has written. I know it's a bit overwhelming at first but honestly, getting  a  diagnosis years ago, was the best thing that happened to me. 

    I promise you will get used to it and do remember that even if you weaken and do eat gluten because you are unaware of any bad effects, it can still do damage. If bread is your downfall could you try making bread with a bread maker ? My daughter had made excellent bread for me.

    Good luck

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  • Posted

    Like you, Jade, my diagnosis was a surprise.  I had an endoscopy session for another problem entirely and the coeliac diagnosis was a completely unexpected result!  It is surprising how one reacts to the concluson that some foods are now not appropriate.  I rarely had good old fashioned fish and chips - less often than once a year - but now I find myself looking at them with longing!  The same with baguettes.

    It is useful to join Coeliac UK because they have very good food directories and information.  I also find that shopping on-line has advantages because the range of gluten-free products available is usually greater than found in the store.  Apart from bread, which is a bit of a problem, I manage to find all that I need by this method.

    I guess the message is: keep at it and you will get used to it!

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  • Posted

    Hi Jade I am just the same as you, no real problems to note before being diagnosed and I am still sort of in denial that I am a coeliac but I do stick to the diet pretty well I think, so well my TTGs are negative ...down from 67 this time last year, which seems a bit weird as I don't use a separate toaster, and don't ask any restaurants how they prep their food, although I do stick to a gluten free diet as far as I am aware
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  • Posted

    I'm in the same situation Jade

    Got my biopsy tomorrow but the consultant said it's only a formality to find out the extent of the damage to my gut and to go gluten-free as soon as I've had the biopsy done. Like you I have no obvious gastric symptoms, but it would explain a lot of seemingly unrelated problems, like low iron, joint pain, and so on.

    It's going to be a challenge as I love my bread too, but I've got a bread-maker and I'm going to try the breadmixes soon

    Hope you succeed in being positive Jade

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  • Posted

    Hi Jade,

    Literally just going through the exact same thing at the minute. Very difficult to come to terms with even though that sounds so ridiculous, but I couldn't put it better than you have yourself. Just wanted to let you know that your not on your own with that feeling. And you have a right to be upset about it, everyone I know is telling me it's not a big deal but they don't understand how it feels because it is not them.

    I found the coeliac society Irelands website very helpful as it gives you loads of recipes for all the things that you are upset about not being able to have, even having a quick browse through it it was settled me from being so upset anyway, there's lots of gluten free breads and cakes and treats that they give you all the recipies for, makes it a bit easier knowing that at least there is something to replace all the things you love with. We don't have to give them up.

    Would love to know how your getting on and feel free to get in touch if you ever find yourself feeling down about it all, it's easier to talk to someone who is going through it than be told it's all fine by someone who is not.

    Best of Luck with everything :-)

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    • Posted

      Hiya, 

      Well it has been a whirlwind to say the least! I went to my hospital appt to discuss my results and going forward. The consultant basically said they had no record of my blood test which showed the high antibodies they only had the biopsy reading so it wasnt enough of a result on its own. I was then sent for more blood testing. The blood tests came back suggesting coeliac but to completely confirm it I am now being sent for 3 x breath tests which involve a special diet 1-2 days before and then a 3 hour test each one! This will apparently rule out anything else i.e lactose intolerant, bacterial growth etc. So its all a bit up in the air at the minute. He said the likely hood is that it is coeliac so I am being sent to see a dietician but it appears that I won't have a definate diagnosis until the new year now. 

      I started cutting down myself but without symptoms I am finding it hard to give up! The bread I cannot get over how disgusting gluten free bread is sad really struggling with that. So I am none the wiser to be honest sad 

      How are you getting on with things? 

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    • Posted

      Eugh that all sounds pretty tough alright. Brilliant that you are getting the breathe test though that sounds brilliant. I had been attending an allergy specialist before I got my results and was followinga strict diet but found out in the middle of it I was coeliac so didn't continue to find out if there is anything else. Started a gluten free diet but back feeling really awful again today, but I just have reall bad tiredness and weakness and shaking. Really annoying me because I am doing everything I should be and getting nowhere. Spending today crying my eyes out feeling sorry for myself.

      Bread is the toughest I think too. The kelkin range are all very good and the B Free bagels. And the asda brand pasta is pretty good too.

      I am the same as you, waiting to see a dietitan and find out how I should be doing all this properly. Finding it especially hard coming up to christmas.rolleyes

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