Does anyone still suffer from tiredness even though on a GF diet?

I have been on a GF diet for over 7 years now, but still get easily tired. I need 10 hours sleep per night and have to rest for a day after a busy day. But I'm pretty healthy overall, I'm hardly ever ill and my stomach is OK, so I don't think I am eating gluten without knowing,

The only thing the docs have found is that I have large red blood cells and they have been this way for years. My iron, b12 etc is normal, and so are all my other vitamin levels, and my thyroid is OK too. So they don't know what is causing my tiredness. Does anyone else feel normal again after being on a strict Gf diet, or do you suffer from the same tiredness as me. Thanks Gemma

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  • Tiredness is a classic coeliac symptom, but one of the issues here is that tiredness can be caused by a large number of things, some of which are psychological and some of which are physiological.

    On the face of it, sounds like it is unlikely (but not impossible) to be gluten related as you are not presenting other symptoms.

    My wife suffered from excessive tiredness and recently had a Merina Coil fitted - this is a coil that contains a slow release hormone. The change in her mood, energy levels, etc has been remarkable.

    Excessive tiredness can also be caused if you or your partner snore or suffer from sleep apnoea where there are breathing problems when sleeping. Net result is fatigue.

    Tiredness can also be related to diet and other medical conditions.

    Only advice I can give is to persist with the doctor and explore other options. If they can't find the problem most larger Primary Care Trusts will have a specialised sleep unit that can help diagnose sleep-related issues and it may be worth asking for a referral.

  • thanks for info. I do find it difficult to sleep sometimes, but sometimes even after a long sleep I wake up knackered like I haven't slept at all. I will defo go back to the doctor

  • What are your ferretin levels? Your iron level can be okay while ferretin can be low. Your large blood cells may indicate folate-deficiency anaemia - linked with CD and which might explain a lot of things. If it is low, it wants handling by a doctor. This is quite informative:

    bupa.co.uk/individuals/heal...

  • I'm not sure if I was tested for ferretin, I will check. Thanks for link

  • Your ferritin will have been checked- this is what they look at when your doctor tells you he is testing your 'iron levels'.

  • As has already been mentioned, have your folic acid levels been checked?

  • yes, they were fine

  • This is how I suffered after some time on the GF diet - I slept 12 hours at night and another 2 hours during the day. After doing a home test I found I was also dairy intolerant - stopped all dairy on the Friday - by Saturday I was back to needing 6 - 7 hours sleep again - extreme tiredness and constipation had gone.

    I do need extra sleep from time to time - but for different reasons - I know it's difficult to decipher at times what is going on - it's hard work knowing our bodies!

    Hope this helps.

  • Hi,

    How one can know if is allergic with dairy products?

    thanks

  • I had a blood test for lactose intolerance and it came back positive. GP lod me I can't have any dairy products. I can feel the diference already (after few weeks)

  • Thanks, I will defo buy the home test

  • I am suffering with appalling tiredness but am sure it is related to nocturnal epilepsy which began in 2007 & the medication I am taking for it.. This has been diagnosed due to stress & the doctor has been unable to totally control it due to stress from a mother with vascular dementia & a husband with Parkinson's. So is my tiredness due to CD.

    Who knows? All I know is that I wish I could regain some energy from somewhere!1

  • I also have dairy intolerance and am true gluten-free. If i eat any of them, then I get really tired but it took ages to work it out. Perhaps you have another food intolerance.

  • Hi Karen,

    How one can know if allergic with dairy? thanks

  • Basically cramps/diarhea and headache the next day after eating dairy. There are tests for dairy allergies and dairy intolerances though and both can be done at the doctors. The first is a skin prick test and the send is a breathe test I think. I just used the elimination diet for dairy.

    Just to add I also have been diagnosed with ME but have been treated for Chronic Candidose and since I've been on the treatment and a Grain-free diet, I've almost completely recovered. Candidose often takes over when the digestive system is not working properly etc so coeliacs would be a prime target. Just a thought.

  • Thanks, makes sense.

  • I presume you do not have anaemia (a deficiency of haemoglobin), only a macrocytosis (large red blood cells). There are numerous things that can cause an isolated macrocytosis- some drugs, blood disorders, liver disease, hypothyroidism and bleeding. Do you have any other medical problems except CD?

    As for the tiredness... Again, the list of causes of what doctors like to call 'tired all the time' is a biggie. They've checked your thyroid and B12 etc. levels (if they've checked B12 and iron they will have also checked folate) which is a good start. Judging by your picture, sleep apnoea is unlikely in someone of your age and build! If this has been going on for some time then glandular fever is unlikely.

    Vitamin D deficiency is becoming more 'fashionable' as a cause of fatigue so perhaps you could ask your doctor about this.

    However, anxiety and depression are also important causes of generalised fatigue so this is important to bear in mind if you have ever suffered or currently suffer from these.

    Just out of interest, do you ever suffer from joint pain, rashes or Raynaud's phenomenon?

    Finally, be reassured that this is a very common problem even in people without coeliac. Looking at your diet is definitely a good idea but also remember that in most people with chronic fatigue, no organic cause is found. If you and your doctor are satisfied that there are no more investigations to be done, starting some kind of regular exercise regime (I find yoga is great for this kind of thing, personally) will definitely boost your energy levels and improve your mood.

    Good luck and I hope things get better!

  • Hi, no other medial problems, but thyroid problems do run in my family so I have a test every 6 months, but always comes back fine. My vitamin D was checked too, so that is fine. But I used to suffer from joint pain every day so I jog every 2 days so I don't really get it anymore. The only thing I get is after a very busy day I feel like I have been ran over by a bus, every muscle in my body aches so bad that I can hardly move or even talk properly, I then have to rest for a day after that. My diet is very healthy and I am never ever ill with colds, flu etc. Thanks so do I.

  • Hiya Glitzygem, I've been on a strict GF diet for over 10 years & still no improvement on my energy levels or lack of!! Still very tired. I was Diagnosed with Chronic Fatigue Syndrome. Doesn't help but atleast gives it a name & a bit of an explanation.

  • Hi Glitzygem and Mari65,

    Also been GF for 10 years, DF for 8 years (with a very occasional cheat). Recently tried FODMAP diet (see my earlier post for links) and it is working tremendously well. Got my mojo back at last!

    Another recent change has been taking a Vit D tablet, Adcal twice a day (from doc). Got my Vit D levels tested, which doesn't come as part of the normal coeliac bloods package, and I was severely deficient. Think this has boosted me a lot too. Worth looking in to.

    :)

  • sorry to hear that you're not better. How did they test you for CFS? And are there any medication that you can take to help with symptoms/

  • Hi Mari, please read my post to Glitzygem below. Hypothyroid problems are chronically undiagnosed and perhaps this site may be able to help you. xx

  • Hi Glitzygem,

    I'm only 3 months in so can't really add to the other comments but I know I don't feel any better now than I used to.

  • I am diagnosed with coeliac for 2 years now, I feel much better, I sleep usually 6 hours a night, sometimes having problem with going to sleep. This is the contrary of your problem so maybe doesn`t have connection with the tiredness.

    Unfortunately I feel the same tired when I am running or climbing.

    The diet is better if not just GF but contains lots of fresh food, maybe vegetarian food. Also some cleansing programs can help. Yoga is excellent.

  • I found out that I was dairy intolerant by doing a Food Doctor test (available on Ebay now - I believe) It certainly was the best thing for me - it tested for 34 different things - dairy being the worse result!

    I still get boughts of tiredness, but nothing as extreme as I was suffering before excluding dairy

  • I found out that I was dairy intolerant by doing a Food Doctor test (available on Ebay now - I believe) It certainly was the best thing for me - it tested for 34 different things - dairy being the worse result!

    I still get boughts of tiredness, but nothing as extreme as I was suffering before excluding dairy

  • thanks, I will buy this test

  • Thank you all so much for your replies. All this info is very helpful indeed. I have just accepted that I am tired most of the time, but in the summer I am much better, still tired but not as much. I will see if I am allergic to anything else by getting some more tests done. But I have noticed that I'm a bit funny with coffee, I do love my coffee, but sometimes it gives me the same symptoms as if I have eaten gluten, but goes away very quickly.

  • Hi glitzygem - there is no definitive test for CFS - like IBS Drs exclude other causes and the consider CFS. You can ask your Dr to re-check your B12, Vitamin D, Ferritin, Iron levels. Sometimes for example Drs will say oh your Vitamin D is fine when it is 25 which is still low. The ideal in the UK is generally around 50 although 75 is considered the best. Eating oily fish and getting in the sunlight for 20mins without Sun factor on will boost it. Yet many coeliacs are deficient and as the gut is used in processing vitamin D until ours has healed we'll often have problems processing it. So many people feel fatigued and need injections of Vit D initially to boost levels.

    I also get the aches & tiredness. I think it's useful to bear in mind that coeliac is an auto-immune condition & as such we will have ups and downs. Getting rest, pacing yourself, exercising and eating well and regularly as all things within your control to try. I found that by doing some exercise I could alleviate the aches and tiredness slightly. I've given up coffee as it has a similar amino acid make up to gluten (so a well versed nutritionist said to me) hence why we'll often get gluten like symptoms from it - the body can attack it by mistake. You may find trialling avoiding diary helps as well. I also tried this and noticed I had more energy. But you need to discuss this with yr Dr as coeliacs are also at a higher risk for bone problems.

    You may also have the winter condition SAD. It's important to get some natural light and get out as much as possible. Try a natural light alarm clock and see if that helps.

    Let us know how you get on.

  • Interesting, I like to get my blood checked every 6 months so I am due for a recheck anyway. I never knew this about coffee, I thought it was just me being weird lol. I love my coffee as I am very busy, and I feel I miss out on so much being GF. Are you the same with decaf? Maybe I could try that. I tried cutting out diary before and lasted 2 weeks, I was starving and felt sick, but will try the home test thing. I am addicted to cheese. I think I have every condition and the doctor should just put me down lol

  • Hi Glitzygem,

    Just to let you know in case you are not already aware, many people believe that ME/CFS is undiagnosed hypothyroidism. I would strongly suggest you have a look on the Thyroid UK Health Unlocked website ( thyroiduk.healthunlocked.com/ ) and get someone's opinion from there. They may be able to help you. Particularly as you mention that thyroid problems runs in your family and that you feel better in the summer. There is also a Coeliac/Autoimmune Hypothyroid link and frequently a suffer of one is a suffer of the other. Gather your blood test results and post on there and someone will be able to interpret them for you. Have you had your thyroid antibodies checked? TPOAb and TgAb? Many many people go undiagnosed and you may be one of them.

    Good luck :-) and hope you feel better soon. xx

  • Hi Diamond Fire - here's a common problem people here have. Many of us - myself included - have been tested for thyroid (with a strong family history of thyroid disease) yet results say 'normal'. Drs then consider CFS - yet many of us don't feel we have that yet have varying days of good and bad in terms energy & tiredness. With Thyroid symptoms being so broad and GP's time so tight & specialist knowledge in this area often limited at that level what would you suggest coeliacs do next?

  • Hi Fiona,

    I've just started a blog on this topic so please do check it out. There are links to further information and people on other forums who are much more knowledgeable than me. They're so lovely and committed to helping others in a similar situation get better. I would suggest posting on the Thyroid UK forum with your blood test results and ranges and have someone there interpret them for you. They will then be able to give you extra info on what to do nest in your particular situation.

    Any more questions, just ask :-)

    Take care xx

  • Very good info, and thanks for link. I get my thyroid checked all the time, but I haven't a clue what they check. But just remembered, my test before last, my thyroid was low, but still in the normal range, but then it was normal again on my last test.Thanks. :)

  • If you think you may have a thyroid problem, it's really important to get clued up on all the info as Drs frequently fob people off (very often due to lack of knowledge). You need to get copies of your test results from your surgery and make sure you keep on top of things. Understand what they are testing and what it means. Check out Thyroid UK. Take care xx

  • Check these threads out in particular:

    thyroiduk.healthunlocked.co...

    thyroiduk.healthunlocked.co...

  • hiya!

    I was diagnosed with ceoliac disease about 5 years ago. I am fairly fit and healthy. I exercise weekly which i find helps and i stick to a gf diet getting 16 loaves of glutafin fresh bread monthly on my prepaid prescription(paid for by myself) which i need to freeze to keep it fresh, I find this to be the nicest to make sandwiches as it doesn't crumble etc... I occassionally get pizza bases, cake mix and pasta (when needed) on my prepaid yearly prescription (paid for by myself). I still need my sleep the same as you between 8-10 hours daily and i'm usually ok! if I keep to a routine of eating healthily,exercising working etc...

    The biggest problem is eating out!! Family are fantastic always asking can you have.......and everyone eating the same or buying in what i am allowed which is great. But eating out elsewhere is a nightmare... I have just got up after being asleep for more than 14hours after an over night stay in a posh hotel having a works conference and pamper session! after asking what i could eat that was gluten free and emailing ahead of visit to let them know i was gluten intolerant I obviously ate someting that i shouldn't have? I felt dreadful on arriving home and took to my bed, which i haven't done for a long time as i stick to what i know at home. I often decline offers of meals,parties etc.. for this reason I know that i will suffer once I get home. It's not fair!! why do we have to suffer for other peoples ignorance?? I get sick of explaining myself to others when asked " well! what can you eat? What will happen if you just have a bit? You won't collapse on me will you? etc...Do you want some toast? or a biscuit? oh! sorry! you can't have none can you? it gets sooo annoying!!! I carry fruit around with me mostly in case I get peckish. I no longer look forward to weekends away or overnight stays it's a good job i'm an home bird. If i'm rambling on a bit I do apologise!! it's because i'm feeling under the weather at the moment, my head, the taste in my mouth (yuck!!) my stomach, I feel like i've got an hell of an hangover!!! Will force myself to get out and about in the fresh air walking my dog, at least he will be grateful. Thanks for listening to my moan!!! Think i've forgotten I was answering YOUR question sorry!!!

  • If you do go away, Novotels are usually pretty good with gluten and dairy free cooking. Their staff tend to be better trained and they employ real chefs who are quite happy to go "off piste" and cook whatever you want (the main menu itself does not offer massive choice, but they are flexible).

  • Some of your posts are a little worrying, I think! The fact that a person has at least one autoimmune disease means that it is probably unwise to self-test. We are all on restricted diets. All of us are on a gluten free diet. We are also very vulnerable to illnesses. In many instances our bodies have been badly malnourished for years, struggling from day-to-day to keep alive, healthy and free from harm. Our small intestine which can measure anything from 4.5 to 9.5 metres in length plus our duodenum has been damaged, scarred, broken and shrivelled to a point where we cannot absorb all the good food that we eat. So having been on our gluten free diets it is time to put back as many nutrients as we can. Dairy offers us our daily calcium requirement so if we are too ready to restrict ourselves of yet another food source then it is important to get it confirmed by a doctor and seek out alternative calcium sources by a dietician. If we don't do that we are definitely 'taping over the cracks' and eventually something will give and that will be our health.

    So - please, please, please ....... re-consider any self-testing and if you do have to deprive yourself on yet one more food source, seek professional advice as what you should be eating to take in the equivalent amount of minerals, vitamins and amino acids,

    Hope that isn't too much preaching. Perhaps we should have some posts on best practice and what food source offers which vitamins, minerals and amino acids to get into peek fitness!

  • Hi Lynxcat, really? I only asked a question about being tired all the time and I'm just going to explore people's suggestions to see if I get anywhere with that. I have been a coeliac for over 7 years now and I don't really fancy feeling this tired for the rest of my life; I want to feel normal again, so if anything else maybe causing it I would like to know. And if it's not, I'm away to move to a hot country and swim in the sea ll day lol. Yes, I understand what you are saying about doing self testing, but don't worry I wouldn't go any further without consulting my doctor first. I love cheese and I don't think I could live without it. I think having a post on good food sources is a good idea though as I do find myself eating the same thing over and over again. Sometimes I just eat stuff because it's GF and I don't even like it!

  • Hi Glitzygem, I wasn't trying to be anything but constructive. I wouldn't ever presume that I know better than anyone else. I just think that having one or more autoimmune diseases means that nutrition is imperative to even begin to feel a tiny little bit fitter and well. When you think that many of us may have had twenty or more years with Coeliac Disease without knowing it and therefore have our small intestines and duodenum shot to pieces, we need to find the food stuffs that are tolerable to our system but that will mend us.

    Years ago, I am reliably informed by a retired senior staff nurse, when people suffered from pernicious anemia (caused through shortage of B12 which in those days was a killer disease) as a cure they were given raw liver which they had to consume on a daily basis for several weeks. This was the only cure that was available or they died (around the 1900-1920 period). Presumably, although many wouldn't advocate eating raw liver today the cooked version once or twice each week would help to build up both B12 and Iron in the body. It is also rich in folate, copper, zinc, phosphorus, selenium, Vitamin A, B2, B3, B5, B6, choline, small amounts of calcium, magnesium, potassium, manganese. It's a wonderful source of nourishment and a way of reducing tiredness. Old fashioned rich meats like venison also helps with tiredness for it is very rich in B vitamins and a portion will supply you with 100% of your daily need of B12 and around a third to a half of a large proportion of B vitamins.

    The vitamin which overcomes tiredness along with a protection of the nervous system (it prevents things like sciatica, shingles, neuralgia and other nerve related illness) is vitamin B1. B1 needs to be balanced with the other B vitamin range or it can cause other health problems if taken alone.

    The modern diet obtains large portions of B1 from wheat, barley and rye .. we no longer eat these items and therefore need to switch to sunflower seeds (a handful every day if possible); flax or linseeds; tuna; dried beans and peas; dried fruit; tahini - sesame seed butter and sesame seeds fresh; fish; pork; pine nuts; pecans; pistachios; marmite; brewer's yeast. Vitamin B complex tablets and multivitamins are useful on days where the above cannot be eaten.

    Years ago it was said that the British diet was the healthiest in the world because we had the largest consumption of the whole of the Vitamin B range in our diets. Sadly we no longer use the same types of rich foods that we once did. Many of our menus have changed as we have clamboured to copy Mediterranean, American, Middle East and Far East Diets. In doing so we have perhaps compromised the best of our health.

  • Take your point Lynxcat, but you have to find a doctor who actually understands and give a crap about it.

    I won't bore all with my diagnosis story again but the health system let me down.Two years after finally getting a coeliac diagnosis I was still having issues and pinned it down to milk. I raised this with several GPs and with a gastro specialist who all seemed spectacularly disinterested. Never offered me a test and worked on the basis that if it makes you ill then stop it.

    I did not drop milk lightly as it is a phenomenally difficult product to avoid (moreso than gluten) but I did do it against the background of a balanced diet with substitutes. Its not that tricky.

    I saw a dietician recently and after analysing my diet she give it the thumbs up and could not really add anything.

    I appreciate not everyone will have the information/time to look into this but my point is sometimes you have no option other than to self-test.

  • I do understand your point Meanioni. However, things are much better now than they used to be.

    The first time I ever came across someone with coeliac disease was in the late 1970's. I worked with a lovely young woman whose diagnosis took over thirteen years to confirm. There were no gluten free foods in the shops and she had tinned bread which she told me was like a ball of uncooked dough. At that time I never dreamt that I too would end up with this disease .. but as a child my father had a saying 'one man's meat is another man's poison' - he had problems eating cucumbers and various other similar foods - he just couldn't digest them so he mostly left them alone. I have always done the same thing. If something is difficult to digest I usually don't eat it.

    This is how I came to find out that I was a coeliac. I was having problems (to my mind) every time I ate wheat .. it came upon me over a period of time. I was ill when I ate it and apparently not so when I left it alone. So I happened to mention it to my doctor when I was next at the surgery. I had blood tests and I came back all right for wheat but I was a coeliac. Considering I hadn't eaten wheat for a very, very long time, it's a wonder it registered. Even then I was convinced a mistake had been made but over the next few months my symptoms got worse and now if I were to eat anything in with gluten I would be violently sick, over and over and over again.

    I do take in dairy but notice that sometimes I have to reduce it a little as it does produce a lot of mucus and causes coughing during the night if too much is taken in over a period of time. I hope that I would not be in a position to have to give it up though as I really do enjoy it in my tea - I have loads of full-fat milk in my tea and coffee. I do not like semi-skimmed or even worse skimmed. I love creamy butter, matured cheddar cheese and full-fat cream cheese and cream. So I would miss all of these things if I couldn't eat dairy produce.

    I suppose time will tell and I will keep my fingers crossed.

  • Hi ,

    I have just stumbled across your blog and was intrigued to know if you found the answer yet ! I have been on the GF diet for 6 months and was getting no better. I just felt like I had a fog in my head and that I just wanted to lay down and go to sleep all the time. I saw a different doctor on my last visit and he suggested taking Vitamin D3 - I think because I had low bone density as well - apparently low vitamin D3 means your body doesn't absorb the Calcium very well. Anyway - I bought some Sunvit D3 supplements and I do think it has made a difference to me - I am now able to run much more than before and generally feel happier as well - I was pretty moody I have to say.

    So if you are still feeling tired why not give them a try?

    Ian

  • Hi Ian,

    Interesting, well when it is sunny, and we had a whole week of sun the other week there), it made me feel so much better, so I really think I need to move to a hot country and I would be fine lol. Do you get d3 from the sun?

  • Hi, yes I think you do, but I think you 20 minutes a day unclothed to get the recomended daily dose! I started with the supplements and feel so much better. May be worth a try for a month or 2 to see if it perks you up a bit.

  • Hi Glitzygem

    Forgive me if you've done this, but ask your doc what your ferritin levels are. For me it never gets picked up at the doctor's surgery, only the hospital. I've had low ferritin for over a decade now despite massive prescription supplements. I am now getting intravenous iron infusions (as an inpatient). Good luck.

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