I wonder if anyone else has this dilemma. I had a gastroscopy done last October to test for coeliac disease. My father, sister and a first

cousin have the condition and as I had all the same symptoms I went gluten free for nearly a year before I had the scope done. I could only stay on gluten for 3 and half weeks as I got so ill and and felt system failure with even my kidneys not working properly. My test came back negative. I was amazed and since my diagnosis my 6 year old grandson has been diagnosed with coeliac disease too which could only have come from me. The doctors have nothing to tell me except to stay off gluten!

3 Replies

  • Hello, sorry to hear about your struggle. Have you heard of SCD (Specific Carbohydrates Diet)? It is intended for those with Coeliac disease and some other serious problems, but also helps with candida (in my case). Here is the website: breakingtheviciouscycle.info/ and the book can be bought on Amazon. There is also lots of information about it on the Internet. This diet did help me - within a week my bloated stomach went away! I also tried Gluten Free diet but with partial success as this diet still includes grain and types of carbohydrates our bowels can't digest.

    If you want more information, feel free ask. I've been on SCD for over 3 months now.

  • Did they do the blood test TTGA & was that negative too?

    It may well be that you have NCGS ie Non coeliac gluten sensitivity, which means you are still intolerant to gluten & it is still an auto immune disease, but it does not effect the villi in your gut ie it is effecting lots of other parts of your body instead. i'm surprised that your specialist didn't tell you about this.....there again I am not that surprised!

    Suggest this to your GP & see if he will still agree to you being regularly seen by a dietician, get the standard densa scan done etc.

    Apart from that, definitely stay off gluten, cos that's what your body is telling you to do.

    Another great website which helped me hugely is purehealth.co.uk run by Micki Rose, loads of info on there & a fab book called The Paleo Approach by Sarah Ballyntyne, helps explain it all & is indispensable if you find you then have other food intolerances. For most of us I reckon it doesn't come alone ie you may find other food groups that bother you too.

    For me it's GF, DF& soya free & 2 years on now discovered Xanthum Gum & other gums bothering me & presently egg free, nightshade free, grain & pseudo grain free (apart from rice) & fingers crossed this has put me back on the right track again. So listen to your body & tweak where you need to. There is o one more than me who just loves their food & you do get your head around it & find delicious alternatives. Good luck

  • Hi, I have had negative tests in the past however then most recently I got a positive one which helped to confirm what I knew already - gluten was having a really bad affect on me. I am now following the FODMAPS diet as this is gluten free as well as being lactose free (which also seems to affect me). The most effective approach I have have is to take a plant-based nutrition approach which you can thrive on. This approach has been scientifically beneficial in the prevention of chronic diseases such as cancer and heart disease (see the China study) and if like me you are concerned about getting everything you need from this kind of approach then fear not...many ultraendurance athletes follow this approach (just look at Rich Rolls and Matt Frazier). I definately agree with those who have emphasised the point to listen to your body as to what it responds to positively as well as negatively. All the best.

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