night of hell!

I think I was accidentally glutened by a young relative who put his bread on my plate yesterday or did something similar. I didn't see this happen but have tracked back to the source of the problem. I have been so ill all night - I am sure you all know the symptoms. Now, I have not been diagnosed as coeliac just NCGS, although my doctor thinks I have coeliac; and as I have got better being gluten free there doesn't seem to be any point in testing. But if I did want to be tested I would have to eat gluten for six weeks and have six weeks of this hell! That is torture. How do people cope with it? And isn't it time a new test was developed? This latest incident has made me absolutely convinced I will not get tested!

Sorry about this but I felt so awful during the night and would have called the dox if the pain had got any worse. It was so violent. Never experienced this before - usually my reactions have been to do with glucose syrup which are rough but nothing like last night - it was frightening.

6 Replies

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  • Hi Urbangirl,

    You really do have my sympathies.

    It's 12 months on since my last glutening and I can still remember how completely awful I felt.

    I agree with you that a new test needs to be developed. I'd like to hope that someone somewhere out there is already working on one.

    I hope you feel better soon.

    R.B x

  • Hi Urbangirl, firstly I'm sorry that you've had a bad night so poor you. Now how gluten affects us depends on how much and when i've been gluten it is like having gastric flu with the stomach issue s a raging head ache and sometimes my glands in my neck swell up. When my gastro asked my symptoms and I told him this, he nodded knowingly and said that extreme symptoms like this showed that I stick to a very strict diet, so on one levels is good but not when we are suffering.

    You ask how to others put up with a gluten challenge and the simple answer is that many just cannot and end up being self diagnosed.

    I personally do not like food that I can eat being prepared with food that i cannot eat as to wheaties they may feel empathy with us but they just don't get it, as food is food to them and they would have to be made to prepare food in a poison factory that was full of toxins and toxic dust to really understand 'our' fear of being made ill.

    I'd also drink plenty of water to help flush it out of your system.

    And I hope that you feel better soon.

    Ps theres lots of posts about a gluten challenge and how gluten affects us in so many different ways so the main thing is you don't feel like your alone in your symptoms. just use the 'search healthUnlocked' box and all will be revealed.

  • Hello Jerry and Regalbirdy!

    I am lucky, in as much as once the stuff is out of my system I recover reasonably quickly. That said I spent several hours stuck in the bathroom - I couldn't move; and yes Jerry I too had a dreadful headache and was shivering so much. Didn't notice any swollen glands but didn't look for them. And now I am shattered!

    I have learned yet another lesson about food preparation in another person's home. I trusted the person making lunch but did not expect the contamination in the way it happened.

    Definitely need a new reliable less intrusive test!

  • My husband is in the same position as you. We were both tested after both our children were diagnosed and our results were negative, however we knew one of us must have the gene so we both decided to go GF. My husband now reacts badly when he has gluten so it likely that he too is coeliac. He also cannot stand the idea of consuming gluten for 6+ weeks (it's 6 weeks of eating gluten, then waiting for results, then possibly waiting for an endoscopy). There's no way he could work whilst doing a gluten challenge, so it feels like he will have to be a self diagnosed coeliac for the time being.

  • Hello Mrs Journs, I sympathise with your husband. If I had to go in to work today I would be useless, let alone tomorrow and the day after etc., And you are right it is for more than 6 weeks.

  • Like Regal Birdy I vividly remember my last 'Glutening' and do not care ever to feel so ill again so you have my sympathies.. It just reminds us all how careful we must be..

    I hope new testing comes along too that will mean you don't have to have 6 weeks of hell.

    Take care

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