I've been misdiagnosed!

Yes, it appears that I am a fake, although not intentially to deceive you all! A new consultant last weeks confirmed what I have suspected for a few months now - I do not have DH and am not Coeliac. My original diagnosis was made by guess work and the fact that when I went on holiday to coastal resorts and laid off the bread, my tummy issues got better and my skin cleared up. Now it turns out that the reason my skin gets better when going abroad to very hot places is because I do one very sensible thing, which I don't do when out in the UK sun - use a strong spf!

The new diagnosis hasn't been 100% confirmed but a biopsy was positive and am now waiting for bloods to come back. My new consultant is being very thorough and is even testing my DNA, stating that as I have insurance we might as well go crazy! He has given me medication for what he suspects it is and it is working like a dream. A very weird, slightly psychotic dream, but a dream nonetheless. Results on 28th, so I will let you all know then so that you may sleep easy.

until then, I will be deciding where I can go from here, in terms of my posting on the boards and boring you all senseless with my blogging. I am thinking about maybe writing as an auto-immune disease sufferer, which we all are, only I have a different one, but from a view to cross referencing ideas on how to deal with them on a day-to-day basis, what they all have in common, what are the differences and how we can all learn from each other. Whether I will stay GF, I don't know as I was starting to get frustrated with it all, even though I feel a lot better generally without gluten in my life.

Let's see, shall we?

3 Replies

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  • Well good for you and please do not refer to your self as a fake you are an auto immune system sufferer and being a coeliac I can relate to that.

    Now as far as bloating and having an upset stomach after eating bread. This is why there has been such an interest in a wheat free diet because since super markets started baking their own bread the sensation of bloating has been common. It can be brought about by eating super market baked bread because they pump the bread mix with additives including phytic acid (phytic acid is the enzyme in soya beans that makes soya beans indigestible unless cooked) this is added to make the bread rise whilst it is on the production line so it has fully risen in around a minute. It is these additives that are causing the bloating. So I would bear this in mind when you return to a 'normal' diet.

    Hopefully you will also feel empathy with someone who announces that they can not eat gluten so you will be much more aware of what they are really feeling and you will know the fear of food that coeliac suffer.

    And good luck.

    Jerry

  • Exactly! I was thinking, just the other day, that I am glad I spent 18 months as a faux Coeliac as I had heard a lot about it but didn't really understand how such a natural thing could have a harsh impact on the immune system and, indeed, the body. I also realised, with rather odd glee, that if I ever had a Coeliac round for dinner I have a whole wealth of knowledge about cooking GF and can make a mean GF chocolate cake!

    Didn't know that about supermarket bread. When they gave me the endo/colonoscopy fun they did find inflammation in my stomach, which I realised might have been causing me some pain but now I wonder if it is that lovely additive you mention?

    Thanks for your wishes - I shall be updating in a couple of weeks, once I get the full results.

  • Best of luck with reaching a diagnosis MissC! Don't forget to share you GF recipes ; ) Do bear in mind that a lot of online research says those with auto-immune diseases should avoid gluten, as the make up is similar to some anti-bodies/ triggers which other disease fights so do check with your specialist e.g. Thyroid, RA and Lupus.

    Do let us know how you get on - good luck!

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