Coeliac query

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Apologies in advance for the long-windedness of this post!...

Last year I suddenly started experiencing awful gastric problems - severe bloating, horrific gas with eye watering smells (sorry to be so graphic) and bowel movements that were not normal. I thought I might have IBS so self-treated with various over the counter remedies and alterations to my diet, but nothing made a difference, so eventually went to my GP for help.

An initial diagnosis of IBS failed to respond to drugs so a series of blood tests were done, including the one for coeliac, which came back negative. At the time I was severely limiting my intake of bread, cereal etc. as I wondered if that might be that I had picked up an intolerance (as I exercise a lot and fill up on toast and cereal in between meals). I am not sure if stopping all of this could have affected the test?

After a series of negative test results, I was back to a diagnosis of IBS. Four different drugs later and no response to any of them and I asked for a referral to a gastroenterologist. A variety of tests including an endoscopy and biopsies. The biopsies were lost and my consultant said not to worry as I 'probably didn't have coeliac disease anyway'. Bounced back to my GP who yet again stuck the IBS label on me and prescribed variations on a theme of drugs I'd had before, which yet again I have not responded to.

My symptoms are so similar to many of those described with coeliac that I decided to try an elimination diet to see if that made a difference. Didn't notice too much of a change after two weeks, so returned to normal eating and went to town on toast, pizza, cereal, all the things I'd missed! But oh holy goodness did I pay the price. Was in so much pain with the bloat and gas.

So my question is should I request another endoscopy to rule in/out coeliac (even though it's a singularly unpleasant procedure!) or does the fact that I wasn't massively better after two weeks an indication that it is not coeliac?

Thanks in advance to anyone who can help!

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6 Replies

  • Posted

    Hi,

    I have been diagnosed with so-called IBS for 8 years and similarly to you I experienced bloating and horrendous flatulance. I've tried many things. Seeing a dietician, medications, and yes I did go and have an endoscopy and biopsy. I was tested negative for coeliac. Are you aware that you can have a gluten intolerance but not acutally have coeliac disease, to be tested for coeliac disease you have to be eating gluten and also just because you tested negative doesn't mean that this is necessarily true?!

    It's a very difficult area and lots of work is being done to try to demistify it more. Quite simply I try to find what suits me and then stick to it. This is not without it's difficulties as it's easier to have a "label" so that you can explain it to others and it helps them to understand. I am lucky that I have been finding what suits me and I now have a very supportive boyfriend. The same does not go for my parents...they don't understand and think I'm bineg awkward. The best thing is having someone who supports you as self-esteem suffers. Don't give up but don't expect a quick answer. I'm glad you're finding support early on through a website. Hopefully we can all support one another.

    I hope htis helps a little

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  • Posted

    Hi perplexed

    My Mum was diagnosed about 5 years ago with IBS, she was getting worse & worse over time, not responding well to treatments etc. Turns out she's actually got a dairy allergy.

    She cut out milk, cheese, butter etc all the usual culprits & has been fine ever since, she hasn't had an attack for nearly 3 years.

    Hope this is of some help

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  • Posted

    I have just recently been diagnosed with celiac disease, i would advice that you keep on eating gluten and then ask your doctor for another blood test. When i was having my tests they told me that it was very important that I continued to eat Gluten products in order for them to get a true reading. If the blood test comes back positive for celiacs then you should go for another endoscopy/biopsy. I found the gastroscopy really unpleasant and would not want to go through that again unless i really have to.
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  • Posted

    I have just recently been diagnosed with celiac disease, i would advice that you keep on eating gluten and then ask your doctor for another blood test. When i was having my tests they told me that it was very important that I continued to eat Gluten products in order for them to get a true reading. If the blood test comes back positive for celiacs then you should go for another endoscopy/biopsy. I found the gastroscopy really unpleasant and would not want to go through that again unless i really have to.
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  • Posted

    I was diagnosed coeliac 20 years ago after 10 years going down the nick, but I still ended up in the hospital

    with no real improvement and severe pain with stomach muscle spasm pain, after three days with on food waiting for a scan I was allowed food, which was mince meat and potato, five minutes later the pain returned,

    I already new about the Hay diet keeping carbs separate from protein, I improved straight away and still on it

    today, go to the library and get a book.

    Doctors thought I had a food allergy .I think I may of had this problem a long time.

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