recently diagnosed

After around 6 years of complaining of bloating, cramps, unbelievable fatigue and a multitude of other symptoms I have finally been diagnosed with Coeliac. I've been gluten free now for about a month and while I feel a little better I'm still not back to normal (well normal for me anyway!)

I'm currently awaiting appointments to see a skin specialist (as they think I may also have Dermatitis herpetiformis), and one for a bone scan. I've also had blood tests to check on my nutrient levels (iron, calcium etc)

I feel a little overwhelmed by the whole thing to be honest. The gluten free diet is ok I can cope with that, but all the other things I was told that it can affect has really surprised me.

Sorry I'm waffling here, but trying to explain to someone who hasn't got coeliac what it's like is hard.


2 Replies

  • Hi jilleast,

    You do sound a little overwhelmed! And believe it or not that feeling is completely normal and understandable following a diagnosis of Coeliac Disease - I was the same the same as you in my first few months.

    And yes, I agree - the diet is the easiest bit!

    From what you have written you sound like you're getting good medical support. Mine was good too - and it was a relief to find out what had been making me feel so awful, had a name. However no one told me about the psychological impact that went with this new label. For me the lifestyle change was almost like a bereavement, except the 'person' was gluten and I was surrounded by people eating it everyday.

    Telling friends and family you can't eat the same way anymore; having to smile and say no to the celebratory cakes in the office (again!); giving up eating at your favourite pub/Indian/Chinese restaurant (feel free to insert any of your own here) because it is no longer GF/safe, reading every single packet of food before buying it at the supermarket - I could go on but I'm sure you already know some of these. Whilst I have never deviated from a gluten free diet, sometimes in my first 6 months or so, I would feel angry and think why me?

    You are definitely not on your own. Ask any and all questions that you need to of us and everyone will do their best to help you. No question is too stupid - I promise!

    Also, if you go to work and your organisation has access to a counselling service, then I would give some serious consideration to contacting it. I found doing this most useful and it helped me to get my head around my new situation such a lot. At the very least I would recommend joining your nearest Coeliac association for support - Coeliac UK for example, have a mentoring program; they sometimes can buddy new people up with a Coeliac mentor who lives in the same area.

    By the way it is probably a good idea to mention here that feeling better is going to be a gradual thing over the course of many, many months, so please be patient and be gentle on yourself. Feeling better does happen in time, provided that you stay gluten free and eat a balanced diet.

    Take care of yourself,


  • We all get that because suddenly there is a complete lifestyle change on the cards. Initially I met a man at clinic who wept because he couldn't go for a normal beer with his mates without ridicule. I decided not to be that, but do find socialising the biggest challenge.

    I also had skin DH which eventually cleared on a GF diet - took about 6 months and although I do get occasional breakouts, they're nothing like the blisters I had before coeliac diagnosis. When you go to the dermatology clinic they'll be unable to diagnose unless you have a breakout somewhere so they can biopsy it.

    Joining Coeliac UK in the first year is a good idea. You get a shopping guide and information. They can give you details of support groups in your area.

    Most adults I've met have had the routine extra tests - bone scan, bloods etc. Many are anaemic at diagnosis and have low vit D, both due to lack of absorbing nutrients, so the tests are important.

    Yes, there are other things that can affect coeliacs but if you don't have them there is little point in worrying about them. When I first joined GFG I felt like my avatar but no longer feel that way. The best thing about this disease is you can control it without drugs and that's got to be a good thing.

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