Hi I am 61 I was diagnosed with coeliac disease just before last Christmas. I am having problems needing to sleep up to 12/13 hours a day. I have paid to have a full thyroid panel and the results are good. Can anyone shed any light as to why I am sleeping like this. As soon as my head hits the pillow I am asleep. I also have ataxia and there is a question mark as to whether it is coeliac ataxia. I belong to the ataxia group and I will be asking the same question there. i am surprised that the thyroid blood tests came back OK because of the tiredness and I have lost a lot of hair since December.

14 Replies

  • Hi Jill55

    Probably a good idea to discuss your prolonged sleeping with your doctor. It may well be linked to your coeliac disease, but there seem to be several possibilities apart from a thyroid problem (according to google).

    Perhaps have a look at ways to improve your gut bacteria and this may help improve general health: prebiotic and probiotic foods or supplements.

    Good luck with sorting this out.

  • Thank you Penel. I have plenty of energy in the day but by 5pm it's like someones pulled my plug out. I am seeing my GP next month. I am under a neurologist because of my ataxia and they have done a load of blood tests along side all the ones for malabsorbtion of vitamins due to coeliac disease. Only Vitamin D was low and this has now been corrected.

  • Has your b12 been tested? also vit d and folate ferritin iron. If so can you post the results to see if there are any deficiencies that seem in range but could be upped to give you more ummph

  • Yes all have been tested and I have checked they are well in the guidelines. Thank you.

  • Hi - when it comes to thyroid, "in range" doesn't mean OK as a lot of the ranges are actually set too wide. Do you have your figures available? If you do then could you give the figures - suggest on the thyroid site (sorry can't give link from tablet!) and the experts there can tell you if your thyroid is really ok.


  • I had my thyroid panel checked by a company recommended by thyroid UK. So i am presuming their results would be reliable or am I being naive?

  • Hi - the results will be reliable, but interpretation less so, relying on totally inadequate nhs training. it depends on where in the range they are as to whether they are an indication of a thyroid problem. For instance the TSH range is frequently 0.2-4.2 as"normal" but in reality anything over 2 indicates a struggling thyroid. Many people suffer years of ill health unnecessarily because labs set their ranges based on a set percentage of population presumed to have no thyroid issues, a % that is far too high including many undiagnosed hypo.


  • Here are my thyroid results from Medichecks.

    TSH 1.32

    Free Thyroxine 14.08

    T4 86.3

    Free T3 4.84

    Thyroglobulin antibody 27.770

    Thyroid Peroxidase 31.65

  • The same goes for B12, you could be 'bumping' along bottom of the range and told "all is well" when in reality you could very easily have symptoms. You could post your results and symptoms of both on the Thyroid and PA and B12 deficiency on here on relevant sites accordingly and they will give you a better idea.

  • Getting a diagnosis later in life possibly means you could have an anaemia which is sometimes known as "anaemia of chronic disease", the disease being coeliac disease, blood tests won't register this as anaemia. It's due to immune activation.

    Also make sure your gastroenterologist has done a blood check you for inflammatory bowel markers.

    These help might explain the degree of debilitating tiredness you have.

  • Thank you i will ask when I see my GP on Monday.

  • I was diagnosed with celiac disease a couple of years ago, I have the same problem that horrible weariness.

  • Jill55, please ask your GP to do full blood tests including folate, ferritin, B12 and vitamin D. I was the same as you and my results were very low, now on iron tablets and Vit d at 40,0000 units per week for 8 weeks. Just starting to feel better, more energy and less tired.

  • Thank you Christineblue I've had loads of blood tests. I was only deficient in Vitamin D. I was put on a much higher loading dose than you. My GP then prescribed 1000 units a day I researched at Michael Greger on his site nutrition.org and he recommends 4000 units daily which I take I am also taking Magnesium and Ubiquinol and Vitamin B12 as I am a plant based eater. My energy levels have much improved despite very difficult circumstances at home. My youngest daughter is now in her 5th week in hospital and I am caring for her 2 sons a lot of the time. One who is 7 and autistic the other is 21 months. I am managing very well with the added stresses and general activity levels. Thank you and everyone else for their advice.

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