ceoliac and tiredness

hi. i was diagnosed with coeliacs disease 3 months ago. i have had depression and bad anxiaty for 4 years. the last year i have had shortness of breath and exhaustine. couldnt sleep and if i did it was just for 2 or 3 hours. since changing diet it is like i am a new man. coeliac isnt always about bloating and bowel movements. i have none of that. plus i was tested all with in 3 weeks after taking an allergic reaction to bread with seeds in. all in one blood test. maybe am lucky it showed up so well in my blood. good luck to all coeliacs.

10 Replies

  • Hi Vfr800,

    Glad to hear you're doing a lot better now. On behalf of everybody, welcome to the community.

    Do you know that Coeliacs are entitled to ongoing follow-up care? (we're the luckier ones compared to the NCGS folks who don't get this help). Eg. have you had a DEXA bone scan referral done yet by your GP? Are you also aware of your entitlement to have some foods such as bread on prescription?

    And have you informed your first-degree relatives (parents, siblings and children) that they are also entitled to be screened for coeliac disease by the NHS? Their risk of also having coeliac disease rises from 1 in 100 (which is general population risk) to 1 in 10 because they are related to you. Sorry to have to tell you this!

  • hi regalbirdy. yes i have been getting food from chemist.they have just changed the formula up here in scotland. doctors never said about bone scan. had blood test for iron and so on and everything was good. said i have to get blood tested once a year. as for family my brother has it and i have told my 21 year old son to get tested to

  • Hi vfr800, well this is encouraging so I am glad for you and it's great to have a positive post, so keep up the optimistic and positive attitude, as that's something that money can not buy. So you stay this way and keep off the dreaded gluten.

  • thanks jerry. funny how something as simple as gluten can cause so much different symptoms

  • Hi,

    I would imagine the bone scan rules are similar for Scotland. I know the rules are slightly different up there (I hail from England :)) but surely not on something as fundamental as a DEXA scan to check for calcium deficiency in your bones?

    In my experience, support from my GP to get diagnosed was very good; but ongoing follow-up care has been more patchy - which is why I've mentioned the basics here.

    Something I also often say to people is to try get as many exact readings as you can from your blood test results (with the ranges used). Knowing exactly what's going on can come in very useful; especially if you go on to have further issues in the future. I've certainly found it's much more useful than having the phrase "it's a bit low but don't worry!" given to you - I had a deficiency which needed treating at the time. Subsequently it was, but only when I pursued the issue with a different GP.

    Do remember to ensure that you are getting extra calcium in your diet; and be open to the possibility of needing further blood tests for deficiencies such as Vitamin D. This one will become particularly relevant if DEXA results highlight bone density issues.

  • thanks for your kind help regalbirdy. many thanks from scotland :)

  • It is not accepted that allergic reactions are associated with Coeliac Disease. The responses are totally different.

    Having had a blood test which you say was positive did you have the endoscopy/biopsies to confirm a CD diagnosis? the gold standard.

  • I asked my doctor if I needed camera but she said no. She said there was no doubting results. My brother has had it for 7 years to. I am amazed how my health has changed in 3 months. More energy and clearer head. Better moods. and you may find there are over 300 different types of symptoms. i came on this site to share my experiance to let people be aware that its not just toilet trouble. wouldnt think my doctor would tell me i have cd and give me food every month if i didnt

  • Hi, I was glad to see your post as I didn't have any stomach reactions with gluten either. I was just exhausted, depressed, unfocused, breathless, slept all the time and put on four stone. I tested negative but went off gluten anyway as I felt so rubbish (don't try this at home!). I've since felt dramatically better, but I slightly doubted myself as I read more and more about people's bowel issues. That said, since going gluten free over three years ago I've gradually developed some gut reactions (bloating, gurgling, constipation etc) as part of my response to accidental gluten so be aware that it may not always stay the same!

  • Do you sleep well now? I have gluten intolerance which I discovered from insomnia ..could sleep only for 3-4 hours.After I switched over to gluten free diet my sleep improved tremendously. But I am back to the origional state of medical test shows intolerance to other food also. I have removed them from my diet...but insomnia persists..But it had gone when I switched to gluten free diet

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