Hi everybody

I only got told in July 2010 that i had Coeliac disease after being in pain for 2 and half years and being in and out of hospital and numbers of tests done and all coming back clear and just giving strong painkillers of the doctors. One day i put my foot down as i am just a young women and had enough of the painkillers that weren't doing anything just taking the pain away for abit so back to the doctors i went and told him i wasn't happy i wanted sometime done about it and he said have they not tested for IBS and Coeliac and i said no so he did a blood test and that came back that something was up so send me to the hospital for a nasty camera down my throat and they took biopsy's and they came back that i had Coelica disease i was upset but glad in a way because new i would be out of pain now soon as i started my gluten free diet.

I am glad because Coelica UK have helped me alot to cope with it and the groups i go to twice a year help too.

Then i have all you lot which is even better because i can talk to people in the same boat as me.

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  • i had a simular experiance,had three years off work,terrible depression and on so many pain killers,including morphine ,i could not function,i actually wondered why i was living,as i was in such pain.in the end it was through a number of other problems that i diagnoesed my self,my blood test came back negative but later a biopsy comfermed the diagnosise,within two weeks i was of all meds and back to work in two months.Ifeel i was robbed of three years of life

  • Yes i was the same 2 and half years robbed, i was like give that back after being in some much pain all the time just wanted to stay in bed and never get up unless the pain was gone which was hardly never.

  • Sadly, the same story...

    My coeliac kicked in after I gave birth. At first I thought it was motherhood, all this exhaustion and losing weight. I kept going back to the doctors, getting tests for back pain, bloods for gynae problems, Prozac for depression, told that all new mum's are tired. All the time I was going in to work and sometimes being sick in the loos then having a nap in the boss' office!

    After 2 1/2 years, when I hit 6st 2lb and my hair was falling out I went back weekly saying 'THIS IS NOT NORMAL!' My doc eventually asked me to keep a diary of food in, toilet habits out. After 3 weeks of this he referred me, within 6 weeks I had had endoscopy and colonoscopy and my coeliac was diagnosed on the spot by the endo.

    Funny though, in my younger days I was told aged 18 that I was constantly tired because I was a faddy vegetarian (I blame Morrissey), then at 23 as a student that it was because I drank too much, then at 24, 26 and 28 that I was depressed. Looking back I can very easily pinpoint big coeliac reactions, despite eating wheat constantly.

    Still, what have I gained from all this? The nouse to stand up for myself and shout! I was back at the doc's again yesterday as I'm back on the floor with no energy. After 10 years coeliac doc told me I probably wasn't strict enough.

    I said that my rule was if I hadn't cooked it then I don't eat it, and that I hadn't eaten out in 18 months.

    He said that coeliacs just need to ask kitchen staff to be aware and then they'll be ok and by the way not eating out for 18 months would probably cause depression.

    !!!

    I said, I cannot begin to tell you what my body has been through. When you are hanging over a toilet at 3am because the waiter told you it would be ok you have to make a choice. When you find that you can't tolerate dairy products and then high fructose then your choice is pretty much made for you. And what is wrong with having friends round instead of going out? There is something wrong. I have listed my symptoms and made a three week diary (see I'm catching on!) and this is not a picture of health and I want you to investigate what is going on.

    He said, I will refer you to the Endocrinologist to check your hormone, thyroid, cortisol levels as some of your tests are out of range.

    I said, Thank you.

    Ha ha! Stand my ground these days see! No more 2 1/2 years til diagnosis!

    Chin up Tooley, it's not all that bad being coeliac and yes, it's great to have a group of people who have struggled through diagnosis and the diet and made mistakes along the way. This is a great group to turn to when you are not sure, when you need advice, or when you have something to share. :)

  • God i think we all been in the same boat at some point and i am fine now its just nice to have someone to talk to when your feeling low or just stuck with what to do. I stand tall now when something is up too its great lol.

  • Hi, I was diagnosed with Coeliac Disease when I was 13. I started off with Type 1 Diabetes. I didn't grow for 18 months and I was in pain, weak and had a serious lack of colour. Coeliac Disease (I was told) is like a side effect to diabetes and so they should have been constantly testing me for it, they didn't and they only tested me after I didn't grow. It was a big change to my diet and it did not come easy. 5 years on and its still a struggle. This is the first community site I've joined and I'm hoping it will help :)

  • It will help we will all stick together and i struggle sometimes too as im like its not fair i cant eat that as ill be in pain for days. I find in hard to eat out sometimes too probs all people do with Coeliac as not many places do gluten free foods or if they do its like we do handly with gluten things too.

  • It took about 8 years before I was diagnosed. I started feeling sick with loss of energy loss of weight after I caught 'glandular fever' for the second time (Any links???).. I was even prescribed with Prozac for a while... Until one day I did not have any energy even to get out of bed and I booked an emergency appointment with my GP. Luckily I was sent to be seen by a 'locum' who had never seen me before but had just attended a seminar on Coeliac disease. I happened to be her first case and then we found out that my sister also was 'wheat intolerant'. Having gone on the gluten free diet my life turned round..but now I have a problem with symptoms similar to Thyroid and I am finding it difficult to persuade them to send me for the required test. I hope soon to be able to give good news!

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