New To Coeliac disease - struggling

Posted , 3 users are following.

Hi, this might be a long post but really needing some help and advice...So I'm new to this disease and have only been told a week ago by my GP it's highly likely I've got Coeliac disease and will be having a biopsy to confirm this in November. I've been gluten free since a week prior but accidentally severely glutened myself over the weekend before last with a few foods I thought were safe. I've been off work loads since symptoms started kicking in in April this year and have now been off work for the last two weeks due to the severe pains from being glutened. It's given me terrible anxiety, depression and despite genuinely wanting to get back to work I cannot get out the house without nearly throwing up repeatedly and having severe pains in my stomach most mornings. I've used paracetamol, peppermint tea, hot water bottles and even had my husband massaging my abdomen to try move what feels like trapped gasses around. Massaging it has worked in the past but other times (more recently) not so much. Back in April, I was planning my wedding for July this year (4.5 months to plan everything was rather stressful to say the least) and I don't know if that triggered off my symptoms and coeliac would have just come out another time in my life. I would say I've suffered with anxiety since my early teens, I used to have IBS when I was very young, and have never had good energy levels. I don't know if this means I've had Coeliac for years and only just now it's come to the fore? We've been super strict over this last week but I'm still very anxious, exhausted, weak, nauseous and in a lot of pain that has kept me awake at night. It might be worth mentioning I live on a working farm that works mostly with wheat, rye and barley. Will living here have a negative effect on my health? How long does it take for symptoms to clear up and to feel 'normal' again? Is it normal to have this much pain that I'm bent over a LOT of the time, nearly throwing up but never actually able to and almost instantly in pain and severely bloated after eating most meals? What's helped you all get back in control of your health and life? Has anyone has symptoms like mine? Any advice, or even if others have had a similar experience to what I've described would be great just to know I'm not alone or if there's something I should be doing that will massively help me??

Thanks,

Becky

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2 Replies

  • Posted

    HI  sorry I am pushed for time so cannot write a lot at the moment but I just wanted to advise you to give Coeliac Uk a call or send them an email,  I am just a bit worried about you giving up gluten before your biopsy, as this may affect the results of your biopsy, however I can totally understand why you have with the awful symptoms,  I would give them a call today and get some advice from the experts.  I have contacted them a few times and they are always helpful.  Hope you feel better soon x
  • Posted

    I'm really sorry that you are going through this, I know what it's like.  I know you won't want to hear this BUT you should not have given up gluten/wheat before your biopsy- your doctor should have told you this!  You need to be eating gluten in order for the antibodies to be present which confirm coeliac disease!  It happened to me (long before people knew a lot about coeliac disease) and I had to re-introduce gluten so I could get re-tested.  I know this is not what you want to hear but it is necessary.  Also, the gluten/wheat cause the villi in the gut to flatten (i.e. make them look damaged), if you are not eaten gluten, they will start to repair and when you have your biopsy they will look healthy.  Gluten needs to be eaten for at least 6 weeks prior to blood tests and biopsies in order for you to get a proper diagnosis.  If you need any help on this, contact Coeliac UK who will advise you. 

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