Newly diagnosed Coeliac

Hi,

I have recently been diagnosed and am in the search for some answers.

None of my family have Coeliacs but have had problems with IBS in the past. In the past I had sometimes experienced issues with IBS attacks somewhat randomly, however over the summer I 'suddenly' became very ill and couldn't keep anything in my belly everytime that I ate. I had some nights where I was cold and shakey and felt sick but never was, but the majority of times I had chronic diarrhoea every time I ate and what I describe as 'kungfu' going on inside my belly.

It happened so suddenly that we presumed it was a stomach infection, but it went on for so long and all of the many stool samples that I sent off came back as negative. Finally, the doctor suggested a blood test to screen for any abnormalities and that was when Coeliac was apparent. I then went for a gastroscopy and that confirmed things.

I'm just interested in finding out how yours started? Did it suddenly come on? Did mine get triggered? Was it something that I did? Was it something that I could have prevented?

7 Replies

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  • Hi Amayteach, it must be a big shock for it to suddenly appear like this.

    I'm waiting for blood test results and like you have tried to make sense of "why me" and the where did it come from?

    I'm sure thats its nothing that we did or that we can ourselves prevent.

    this article might help. It talks about us having a genetic pre-disposition, having gluten, and a trigger. The trigger is something that sets off the immune system.

    It also talks about the potential for a future vaccine. Bring it on I say :)

    theceliacmd.com/2014/09/tri...

  • Hi coeliac disease is something that just occurs I believe.

    On talking to others who are coeliac it seems they've mainly had histories of digestive issue.

    Some believe it's genetic.......with some attachment to your blood group??!!! The Chinese believe that blood types are predisposed top develop certain illnesses and blood group dose come into the equation for them when looking for a husband/wife!!

    Coeliac disease if managed well gives you your health back thank goodness.

    It is more accepted now a days with products everywhere. Cafes and restaurants on the whole stock and cook gf.

    Lots of top athletes are gluten free tennis players and cyclists for example.

    I've been gluten free as a coeliac for 4 years and I'm now healthy again.

    Going without isn't how I approach it I just think if I can't have one thing I have something else instead.....lol

  • Hi Amayteach, this is something that most of us wonder because we are born with the genes that trigger CD but why and when is often unclear. With some ladies it can be giving birth that triggers it. I had issues as a child grew out of them in adolescence and then in my mid 20's suffered symptoms very similar to yours. So no you could not have prevented it, it is how mother nature made us.

    It is a shock being diagnosed and you will feel many emotions the most important thing to bear in mind is that you've been diagnosed so you know what makes you ill and I cannot stress enough how important it is to stick to the diet.

    So well done for joining us and making a post and if you have any questions/queries then you ask away as 'we' know what you're going through and good luck with your new dietary regime, in time you will look at what you can eat rather than what you have to avoid.

    Jerry

  • I have recently been diagnosed by blood test only with coeliac disease. I went on a holiday to America this time last year and picked up an infection which triggered off my symptoms. I had never before suffered with any gastro problems. I started off with severe acid indigestion to the point that I couldn't eat anything without pain. Then my gall bladder failed and I had to spend 2 months away from work before it was removed. After this I still had pain in my back between shoulderblades which I still suffer from even now. After many tests and seeing a gastroenterologist privately the blood test was done. I started a gluten free diet straight away because I was in so much pain and the pain is still there but not as bad as it was.

    I believe that an illness or change in hormones triggers the disease although looking back I had a lot of symptoms which were not linked to stomach problems that were a sign that I had coeliac disease. You should read the book Celiac Disease - a hidden epidemic. I knew nothing about it before but this book is very good.

    I have gained weight and feel much better on a gluten free diet. There is nothing that you did that caused it. So you can't blame yourself for that. It came totally out of the blue for me too. Good luck. xxx

  • I had IBS symtoms for years also feel very tired all the time (which I now know are due to lack of absorption of vitamins and minerals from food due to CD). I developed helicobacher infection and after suffered from recurrent gastritis. My GP did blood tests for anaemia etc on a 6 monthly basis telling me tiredness can have multiple causes (stress, insomnia, depression etc). Fortunately a locum Doctor decided to do a CD blood test and I was off the scale. The recurrent and worsening IBS symtoms were in my opinion a sign that my condition was getting worse.

    My consultant told me only 1 in 9 people have symptoms making CD an often silent disease.

    Good luck with your journey. This is a brilliant place to ask questions and feel supported.

    Taje care Amayteach

  • I think it can be heritage - They say that many people of Irish descent are more prone to it - thats my link.

    I also think that part of the problem is from the food industry. There is flour in so many things that you wouldn't expect it to be in and I think that has overloaded our bodies much more than our diet years ago. As an example - if you are out for a meal you have to check that the chips don't have flour on them as they are likely to be frozen chips. Years ago that would not have been an issue as the chef would cook chips from fresh potatoes.

    You have probably been Coeliac for a while but the symptoms have only recently flared up.

    My advice is to take it very seriously and stick 100% to gluten free. Don't be tempted by "a little will be alright" - it won't

    Have you considered joining Coeliac UK? Their food directory and the app for checking labels is very very helpful while you learn what you are safe to eat

    Good luck and I hope your health starts to improve

  • Hi thank you for your reply! I think you are right it probably is the food that I was eating for years too which probably didn't help my dormant illness. I am being honest here in saying that my diet before was not very healthy and I 'got away' with it for so long. I have joined Coeliac UK and have been really impressed so far! It's odd because I don't think I have ever felt so well since finding out and treating it!

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