I would appreciate a bit of advice..

I am a 42 yr old, healthy, fit & active coeliac. I was diagnosed just over 2 yrs ago.

I don't drink excessively, I hardly touch junk food, I eat really well, and drink plenty of water. I drink prob 3-4 cups coffee a day, absolutely no more than that, and the odd fruit tea.

As part of coeliac diagnosis, one of the problems I was having was I was always knackered, but still had the will to put my trainers on and get out and run, completing a marathon or two and various other things, and play football. Afterwards, or rather the next day I was totally shattered all day, and would write off the following evening and just go to bed - even if this was for a game of football for an hour..

I eventually, after many, many tests was told I was 'slightly' - only slightly deficient in Vit D, so I took a supplement to help with that, and it did for a while, but the feeling or effect seemed to fade.

What I notice now, is I am really tired a lot of the time, but this is now affecting every day life much more, in so much as, I struggle to get out of bed in a morning, takes an hour or more to 'wake up fully, or come out of my coma!', I hardly run at all now, even finding the odd game of five a side a challenge - though this would come hand in hand with not doing so much running or fitness. I often find my legs ache randomly, which leaves me befuddled.

I have seen the doctor who has now referred me to the Chronic Fatigue Syndrome clinic, I just wonder if this is the correct thing to do, in that have I had all the required tests, consultations.... etc - I ask this because sometimes things are not as obvious as you think, in a 'you don't know, what you don't know' sense, if you see what I mean, you don't know so you don't ask...

I have researched many things through this website and many others, and If I am honest it could be a number of things, I even thought it might be my imagination..it isn't...I was late to work today, but blamed a motorway crash for the delay, I can't continue to do this. I am a quantity surveyor by trade.

it does affect my mood too, I can be up and down and I also find myself taking many mini naps of a night when I get home, this simply cannot be right in my view...

I love being fit, and the prospect of not being is not something I would like to consider...though I suspect if got to the bottom of the problem if at all possible, then I wouldn't need to consider this. I also don't buy the, 'well you're getting on a bit now, maybe you need to slow down' I really do rest and put my feet up a lot at the moment, it's almost like my batteries are dying...

Any opinions would be most welcome to me,

Thank you for reading,


30 Replies

  • Hi Mark,

    Not sure if I will be of any help, but for those clinicians who say you're getting on a bit at 42 they really need to rethink there views on ageism. At 42 you should be able to lead the physical life you desire. I am 66 and lead a very active life for an OAP, so much so that my Doc allows me 20 units of free nosh a week rather than the standard 16 for the practice. Yes I get a little more tired now than when in my 50's, but that's normal, so being a coeliac hasn't, to the best of my knowledge, deminished my energy levels.

    So I believe there is an underlining condition, but can't shed any light on what. Keep bashing away at your own research and push the medics to test you for everything that related to 'tiredness'.

    Best of luck


  • Hi Mark

    I echo SDMs comments on 42 not being old! Hopefully the clinic will be able to supply some answers.

    One long shot may be that you are eating just enough of the wrong sort of processed food to adversely affect your guts and interfere with the absorption of nutrients. There was a post recently on the effects of emulsifiers on gut health.

    Good luck with the research. If you have not come across Chris Kresser, perhaps have a look at his posts. They're somewhat alternative but may be useful.


  • Hi Mark, I can't offer any help I'm afraid, but just wanted to say that my partner shows so many of the symptoms that you describe, he isn't coeliac, he was told he needed to take folic acid, which he did for a year or so and did make a difference, but then another Dr told him about a year that he didn't need it any more (following a blood test) and now most of the time he's just worn out. He's 39.

    I wish you the best of luck and hope to read good news!

  • Hi Mark

    Wow - You could be describing me! I'm the same age as you and have been diagnosed a similar length of time. Multiple trips to the doctors/various consultants have yielded no long-term solutions for the fatigue I get.

    For example, two weekends ago I was physically active doing Tai Chi all day both on the Saturday and the Sunday. This wiped me out completely until the following Thursday! So badly I couldn't function properly.

    I have no real answers for you and would be really interested to hear how you get on at the chronic fatigue clinic. On my own journey with fatigue I've tried many things. Many help a little, some only temporarily and others not at all.

    If you haven't already, get your cortisol levels and magnesium levels well into the healthy range - this may help a little. I suspect that at one point I was deficient in B5 (this supports adrenal function and I know that my adrenals were/are a bit dodgy); and my serum magnesium was definitely on the low side. Magnesium works alongside vitamin D. Like you I've also had vitamin D issues. Drinking coffee completely screws me up! It's great occasionally - ie once every few months but I find more than this to be detrimental to functioning well.

    I've been listening with interest to Sean Croxton's depression sessions (The webinar is still happening if you are interested). As a result I'm thinking about trying a combo of B6, zinc and evening Primrose oil to see if that makes any difference.

    I'm also gradually working my way through the non-essential amino acid's to see if any of these help. L-Tyrosine worked for a short time and 5HTP seems to help me sleep better. 5HTP boosts Serotonin levels which also eventually gets converted into melatonin. Don't take in the morning! 5HTP is best taken mid afternoon or evening if you choose to try it.

    Fatigue and mood issues can also be related to the thyroid - but I suspect you've already had this checked out.

    Do you remember the 1980s Duracell bunny advert? The pink bunny runs on Duracell batteries and does well, but his friends have inferior batteries and wearout much faster. I often say to people that I feel like one of the Duracell bunny's friends!

    If the fatigue you get is in your imagination, I also have a very good imagination!

    I hope you can figure it out. If you do, I would be really interested in hearing from you - for obvious reasons.

    Take care.


  • Thanks for your reply, it is interesting what you find out when you ask around..

    I also find at night, I become more awake if that makes sense, right when I should be getting off to sleep its very bizarre. Yet struggle like mad as I say when I wake in the mornings, to fully wake up.

    I totally get your analogy of the Duracell bunny and his 'tired' friends....exactly the same as me that to a tee..!

    I take Vit D & magnesium supplement in tablet form from the Chemist, neither of which seem... to make a difference. It's all very frustrating. Though I am not depressed about it, just think its illogical, and feel a sense of loathing of it though in comparison to other lucky folk who don't have to worry or think of the things that we do.

    It is clear though from your comments I have much to learn..! I have started with reducing coffee amounts, to see if this makes a difference - I will eventually get it to zero intake.

    There are other issues itchy eczema type symptoms which are infuriatingly itchy I was informed by my 'much more educated' doctor that I would have an allergy to the cheaper end shower gel products, so he suggested I buy a high end product and I would see a difference, I haven't unfortunately.

    I haven't yet had my thyroid checked it isn't something that occurred to me, though I have read a little about it, so i'll speak of this to the doc when I next go.

    I see the Chronic clinic in mid July i'll come back and comment with their thoughts once I have been, I am highly sceptical that it is this, but will see.



  • Hi Mark

    Your issues sound like they could be cortisol/adrenal related to me.

    If so, you might find a book called Adrenal Fatigue by James L. Wilson to be an interesting read. Fortunately my local library had a copy and it's how I learned about taking B5 - which seemed to improve things. It certainly had my consultant Endo scratching her head as to why my Synacthen test results had suddenly normalised! However I didn't agree with all of Wilson's ideas.

    Although I have had some Coeliac related depression issues in the past; now I mostly get so very frustrated with my inability to function properly on a daily basis.

    Have no suggestions for the eczema symptoms as this isn't something I get anymore. It's one of the things that being on a gluten-free diet seems to have cleared up for me.


  • Thanks i'll look into that book, might give me some pointers. The major thing prior to diagnosis I did get have depressive symptoms, and really bad anxiety, though now, thankfully, that appears to have cleared up and I appear sometimes quite normal!

    Bit totally with you on the daily basis life, its very frustrating and it is apparent at the moment that there is little I can do. I'll look in to the B5 also.

    Thanks again for your help and informative comments :)


  • Hi Mark, your symptoms sound very similar to mine. I was diagnosed with candida after my coeliac diagnosis. I had persistent fatigue, brain fog, aches etc. worth seeing a naturopath if you have access to one in your area.

  • This thread reads like I have written it myself!

    Sorry that you feel how I feel, but good to know I am not alone in the lack of understanding of this.

    Being told that you're getting on (at 42, as you and I are) is ludicrous. Up until my Coeliac diagnosis, I was extremely active in many areas of my work and personal life - and now I can barely do anything after I finish my work day. Often getting very tired during work too!

    I need to try and get some more tests done, based on reading some comments here, the adrenal glands, and testing for chronic fatigue would be a start.

    I still cannot get my head around the idea that about an hour after eating I can be utterly wiped out, and falling asleep though. How does that work so fast!!??

    Good luck with your ongoing fight :-)



  • In a way you are lucky that your go is sending you to a specialist in chronic fatigue......y go does not believe on these " modern syndromes"----his words not mine

    He tells me there are plenty of people in the graveyard who would love to feel exhausted ,to wake in the a.m feeling worse than bedtime, aching, knowing that any exercise will be punished by bone tiredness for about a week following

    He also played the 55 year old , empty nest woman card!

    I sympathise with you and truly hope you get answers to help you cope

  • I was told by my ENT I was gluten intolerant. I've been gluten free (headache free, vomit free, excezma free) for almost two years. Last week, I accidentally ate an organic wheat pizza! NO ill effects????? So I did my own test. Went to the grocery store and purchased organic flour and made a pound cake. I ate the batter and had a slice. NO ill effects!!! So now I think that there is something in commercial flour that is making me ill! Bromide? Pesticides? I wonder how many others have been diagnosed with gluten issues who are NOT???? What have we done to our biggest food source....

  • it also bothers me a lot of the gluten free food is in fact mostly junk food, or layered in sugar. I actually don't eat that much gluten free stuff at all! I just eat meat, veg & fruit for the most part. With that in mind I would have thought I would be full of beans so to speak...but alas its not to be! it is interesting being your own guinea pig though, makes it quite exciting! - good luck with that

  • Oh yeah, can relate to all this. I can't remember the last time I lived on anything less than empty.

    What I have found is that I can't sleep if I have carbs late on - awake with brain full-on or leg madness. Supper is a no-no if I want a good sleep.

    I do get to see my coeliac clinic, good job too as my blood is always whacko and I've needed iron for low hb and low ferritin. If your GP does this role make sure they do a full blood count while you are symptomatic. Get this done before they dismiss anything else.

  • Other than having a few years on you, this sounds horribly familiar. I've lost track of the weeks where all I want to do at weekends is stay in my pyjamas.

    I don't eat junk food and cook most things from scratch. What I have noticed recently is that I feel a lot better if I have no unnecessary carbs, i.e. no bread or rice, minimal root vegetables and no fruit. My stay-awake diet is basically protein, fat, green veg and salad.

    And wine. That's necessary carbs :-)

  • Hi mark, I have celiac and the rash that goes with it(dermatitis herpetiformis) I am on an almost paleo diet. I do eat organic beans,meat, fresh fruits and veggies. Almost no dairy and no sugar. I had extreme fatigue and like you I would go to bed tired but then wide awake. One thing I want to suggest is that you may want to decrease your coffee intake. And switch to organic. There is a protein in coffee that acts like gluten. I love my coffee and drank 3 cups a day. But I noticed when I cut down to 1 cup of organic with minimum cream and no sugar, what a difference. You have to heal your inside and the best way to do that is go all fresh and organic if you can. My brain fog is GONE and my fatigue has decreased. Drink lots of water. Hope this helps.

  • Well, Mark, you could simply be over-exercising and not giving your body time to recover. Sadly, you do have to tone it down with age. But it also sounds very like an underactive thyroid. I take it you've had that checked? If so, be very careful that they haven't just told you you are normal when, in fact, your thyroid is showing signs of subclinical hypothyroidism. If you have been tested, get the figures and you can run them by me and I'll let you know how 'normal' they really are (I have the condition). Don't trust doctors on the subject; the NHS is notoriously out-of-touch on thyroid.

    Other than that, it could be a B12 problem, like pernicious anaemia, (you would have to test B12 and IF factor), or something like ME or chronic fatigue. Those are the more obvious ones to try first. If it helps any, B12 deficiencies and Hashimoto's disease (underactive thyroid) are both autoimmune problems that coeliac sufferers often have, so they are obvious culprits to check first.

  • Hi mark

    I'm surprised your GP has referred you to chronic fatigue clinic without testing your bloods!!!

    I would go back to gp and ask them to do a full thyroid profile plus VitD, B12 iron calcium and folate levels.

    The fact you are awake in the night suggests to me an adrenal issue , I am with Regal Birdy on that, but I hear in the UK doctors are very poor at picking this up. Your going to have to be assertive to get to the bottom of it.

    Let us know how you get on

    Good luck


  • Sorry Kiki - i have had all my bloods done, and various other things too, many needles, many tests.... i guess this is why they have referred me to the clinic.

    However, both yourself & Regalbirdy have given me food for thought, as have one or two above, thankfully, for me to look into. I'll look into the adrenal issue though its simply not something i have had a discussion about at all...



  • If it is a chronic fatigue thing I have first hand experience as my little boy was diagnosed in jan 2014. He has coeliac disease too so maybe there is a link. He had 6 months of part time school and started to pick up. He's still a little over tired but so much better.

  • Hi, just a thought - when I first cut out gluten my symptoms improved a lot but didn't completely go. I still had brain fog and tiredness. I have since found out I have major problems with Soya and also Milk/Lactose. Try cutting both of these out as well (especially the Soya) and see if that helps. You can always try adding them back in again and see if the symptoms return just to double check. Sometimes it is not just gluten that is causing the problem. Good luck and I hope you find the cause.

    PS. I also take Ferrous Sulphate (Iron) tabs 200mg once a day as I find I get extremely tired without them.

  • My son was diagnosed with a soya allergy in feb this year. This must all be connected.

  • Hi Allie65,

    It's a great thought and very relevant to the discussion.

    In my case, I decided to take both soya and dairy out of my diet well over a year ago. It did help and I saw an improvement in symptoms - but it hasn't solved the underlying problem.

    I hope you've had better luck.

    R.B. x

  • Hi Mark - I havent read through everyone's responses here so this could have been said and Im therefore echoing other's thoughts! It strikes me that this could very well be an underactive thyroid - which is closely linked to gluten sensitivities interestingly! There are lots of issues with diagnosing underactive thyroid conditions so please dont just listen to your GP on this - please look at the website and forum Thyroid Patient Advocacy who will help with thyroid and adrenal issues and advise on getting a diagnosis if you're one of the many who are told its not your thyroid when in fact it is - that's what happened to me and I well understand the fatigue which was dreadful.

    Also have a look at trulyglutenfree.co.uk which is a very useful site.

    My turning point in getting sorted was reading Dr Arum's book about thyroid but I cant find it on Amazon, other good choices are:

    Why do I still get thyroid symptoms when my lab tests are normal by Dr Datis Kharrazian

    Your Thyroid and how to keep it healthy: the great thyroid scandal and how to survive it by Dr Barry Durrant-Peatfield.

    hope this helps, Im almost certain this will be your problem!


  • This rings bells with me. 14:30 ish every day and I'm almost nodding off. I'm not anaemic - but I am starting to wonder about other deficiencies.

    What amazes me is how suddenly tiredness comes upon me - full of beans one minute, snoozing the next.

    It's not something that has been raised by health staff but I'll be asking next time. It's interesting that it seems to ring true for a few of us. Maybe an area that need sore research.

  • The full thyroid profile is TSH - FT4 - FT3 - Anti-TPO - Anti-Tg - however it is very rare to obtain the full profile on the NHS. You can obtain private tests through Thyroid UK with a discount. These can be done in the comfort of your own home from Blue Horizon or Genova Diagnostics.

    I think you also need the following tested - Ferritin - Folate - Iron - B12 - VitD. These have to be requested in addition to the Full Blood Count normally done by Docs. You say you have had loads of tests - could you post them with ranges - possibly in a new post so more people see it and can comment.

    Low stomach acid prevents food absorption of the vital vitamins and minerals that are needed for good health. How is your gut - do you have any issues.... ?

    Large doses of VitC also supports the adrenals.

  • Hi Marz,

    Lots of tests over the last 18months, bloods, various vits etc - I have some of the results at home, i'll dig it out and repost, with more accurate information, thanks.

    My gut...is up and down I would say, at times can react, without having had gluten, which then has me wondering what I have done, eaten for it to happen, though if I am honest, it appears to be happening less, which must mean I have or am getting control of things, which can only be positive.

    I have cut dairy almost completely out, but am going to cut it totally for now, same with coffee :( my diet generally consists of lots of various vegetables, chicken, mince, fruit, some crisps (seabrooks normally) and a cider/wine with lots of water thrown in - oh and quite a bit of flavoured rice - nothing else, that is literally it as far as my diet is concerned, like spicy foods too but only make my own, I don't usually have a reaction if I make a chilli or curry with lots of veg thrown in.

    I take Vit D & Magnesium supplements at the moment, but will look further into Vit C - I am also going to look at thyroid to understand that better.

    Low stomach acid isn't something I have considered at all, so have no idea though as I write it is possibly common sense.. so i'll also look into this to what I can do..



  • If your test results at home do not include Ferritin - Folate - Iron - B12 then I would certainly point the finger in that direction !

  • Hi Mark,

    If you are looking into vitamin C, you may want to consider an ascorbate rather than ascorbic acid - which is harsher on the guts and I believe, less bioavailable.

    The most inexpensive seems to be sodium ascorbate. You can also get Vit C in the form of calcium ascorbate; but I prefer to use magnesium ascorbate which gives me a small amount of magnesium as well as the Vit C.

    Good luck with your research.


  • Hi Mark,

    I just jointed the forum but have had issues with fatigue for a while.

    My one bit of advice would be to get a hormone panel done ordered from your doctor, with a particular focus on free and total testosterone.

    After a few years of symptoms in my late thirties, I finally got tested in 2011 and was told that I had the testosterone levels of a seventy year old man!

    It's not a walk in the park to get the right treatment after that ( I can share my story if you e-mail me) but it's a start.

    I read somewhere that low t could be another result of celiac - I am following that up now.

    Good luck,


  • thank you, i'll look into this.

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