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Advice for a newbie please!

Posted , 3 users are following.

amys13
amys13

Hi all

Firstly I apologise for the length of my post but am hoping someone will be able to help.

I am a 31 year old woman who has been experiencing symptoms for the last three years.  Crohns and colitis runs in my family and 3 years ago my symptoms started with awful acid reflux, mucous stools and diarreah, constant sick feeling, weight loss, extreme fatigue, chest spasms - I think these were the main ones.  I got referred onto a colorectal specialist and had a stool test done which showed I had a very high calprocten level (showed inflammation).

I then fell pregnant so all this got put on the back burner and my symptoms slowly eased.  I now find that my symptoms 'flare up' about every 4 to 6 months with similar symptoms.  Especially the constant nausea and tiredness.

In November I had an endoscopy and colonoscopy which showed and I can't remember the exact wording, but mild blunting of villi and congestion were used.  I then got referred onto a gastroenterologist who I saw last week.  Unfortunately he didn't have the results available from my tests (useful, I know).  I had had a blood test done for coeliacs which came back negative.

However, the gastroenterologist seems to think that I may have coeliacs without it being proven by 'tests'.

I literally know nothing about coeliacs apart from, my understanding is, a gluten intolerance and it is an autoimmune condition.

So I guess my questions are this...

1.  Does it sound plausible that my diagnosis is coeliacs?

2.  Does coeliac flare up then go into remission for periods of time?

3.  Is there treatment/what is the treatment for coeliac?

4.  What exactly is coeliac?

I am sure I could google some of these answers but always find it better to speak to people who actually have it as I know you will be the experts!

Thanks so much in advance and thank you for reading.

1 like, 3 replies

3 Replies

  • amys13
    amys13

    Posted

    How could I forget, one of the worst symptoms lately is oral thrush!  I have never had it in my life and my doctor tells me this is what I have,have had it for around 5 months now, tried various medications and nothing will get rid of it!  
  • jade11650
    jade11650 amys13

    Posted

    Hiya,

    Coeliac disease is a lifelong autoimmune condition which is triggered by an intolerance to gluten. Gluten is a protein found in wheat, rye and barley. There isn't a treatment for it as such other than to go on a life long gluten free diet. Generally speaking eating gluten containing foods could damage your small intestine and take 1 month to repair the damage but it seems strange you have on and off symptoms. With me I didnt have any symptoms other than being anemiac and ended up having a positive blood test for it as well as blunted villi. The only way to self diagnose if you are not getting any more help would be to eliminate all gluten/wheat/barley containing foods from your diet for 2 weeks and see how you feel. If you have symptoms when you introduce these foods then it could give you an answer. I am a silent coeliac but my damage was visibly there and I did have positive tests but still frustrating as gluten free living is a huge lifestyle change that I have had to get my head around!

    A question do you suffer from anxiety at all? And have they checked you for IBS?

    Jade

    • amys13
      amys13 jade11650

      Posted

      Hi Jade

      Thanks so much for your response I really appreciate it.  That's really good advice to try the gluten free diet for a couple of weeks and see how I get on.  I have just had a look on the coeliac website and thereis some great info on there but I do feel for you, adjusting to such a drastic new lifestyle must be hard!  I don't suffer from anxiety and I don't think they have checked me for ibs, what would the test for that involve?  

      Thanks again

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