Coeliac Disease - Start of my journey.

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hello all,

i have  been having problems with my guts and motions for about a year or so now and just put it down to rich foods etc.

over the recent months every time I eaten a main meal, cereals, drank beer I have had the sudden urge to use the toilet passing motions like turning on a tap and very smelly motions. 

I went end to the doctors who did blood tests and I'm now been referred for a endoscopy as my Coeliac Disease blood test was 17.4. 

Does this his mean I definitely have Coeliac Disease?

I'm quite concerned as to if I have it then a massive education on what to eat or not eat is needed.

im male 39 years old and a typical male when it comes to ingredients in foods etc. 

my my journey is about to begin I feel, 

has anyone got any advice for me or can prepare me for what happens next, my endoscopy appointment as not been made yet as the doctors computer system was down when I got my blood test results and I got a call today saying they posted my referral to me so I can make the appointment when I receive the referral papers. 

Thanks darren

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7 Replies

  • Posted

    Hi,

    it does sound like you may be Coeliac and to be honest after years of feeling rubbish it was such a relief to be diagnosed and know what I was dealing with so although it isn't easy it's still better to know what is going on.

    The GPs are useless when it comes to Coeliac and the advice from the gastro and nurse were limited. I have read so much and educated myself and after a year of being gluten free and taking various supplements and eliminating various irritants I finally feel as if i've turned the corner and am feeling so much better. It really is not easy but so worth all the effort. I felt like I was dying at my worst and had so many symptoms but now I feel really well most of the time and that is a wonderful feeling that cannot be taken for granted.

    Hope you get sorted and feel better soon. smile

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  • Posted

    I suggest that you join Coeliac UK.  They provide a lot of information about diet and have a directory of gluten-free foods as well as recipes.  The major supermarkets now do wide ranges of gluten free foods, which helps a lot as well.  Otherwise, the main thing is to look very carefully at lists of ingredients and not eat anything containing wheat, rye or barley.  The last of these means no more beer, I'm afraid.  Gluten-free beer is available but, like gluten-free bread, it's not a patch on the 'real' stuff.

    Eating out is the biggest problem because it is surprising how often gluten appears in food.  Restaurants are required to have available lists of ingredients with allergens, such as gluten, highlighted.

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  • Posted

    Hi Darren,

    I am going through the Coeliac diagnosis at the moment! I have IBS and was diagnosed with that after having a colonoscopy about 5 years ago so I had to adjust my eating habits etc and felt like a massive change but now it all feels normal to me! Are you getting pain every single time you eat the same kinds of food or only sometimes? 

    I went to the doctors about something else and whilst I was there had a blood test (A full MOT to rule everything out) and I had a high reading for Coeliac this came as a suprise to me as I am not experiencing any symptoms. 

    With IBS you have a sensitivity to foods one day beer might upset you, other days its fine whereas with Coeliac everytime you eat it you would know about it as my uncle has it, he also lost loads of weight before he was diagnosed! 

    The doctor explained you don't always have symptoms with Coeliac so I had my gastroscopy done last Friday and they were looking to see if the Villi on my small intestine was flattened. They said it does look a bit flat so I am now waiting for the biopsy results! 

    I am really scared about having coeliac - I know that there are a lot of Gluten free foods out there but it is a bit daunting and will mean I will have to think about things a lot more especially when eating out etc so I can understand what you are going through! 

    I hope you get your gastroscopy soon so that you can get some answers! 

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    • Posted

      I'm just on a quick break at work so will reply better later.

      my gastroscopy is this evening at 5.30pm and I'm not looking forward to it.

      I will update more later after the procedure.

      Thank you for reply

      darren.

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    • Posted

      Hi Darren,

      You will be fine, I just had the numbing spray and it was all over in 5 minutes and I went home 10 minutes after that!

      I was petrified and it really wasn't as bad as I thought it would be.

      It's one step closer to finding out what is wrong - you will be fine!

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  • Posted

    Hi all,

    Last night's procedure went well. I just had throat spray and it's was over in a matter of a few minutes.

    I didn't like the feeling of the numbness in the throat and twice gagged a bit but breathing through my mouth helped this.

    I was told I would be contacted in about 2-3 weeks with the results.

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  • Posted

    I have got my follow up date where I get the endoscopy results.

    30th of October and I will know either way if I am coeliac or not.

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