I've was diagnosed about 6 years ago and ever since followed a strict GF diet.
The past year I have felt so tired, exhausted, loss of energy and can't concentrate.
Been to the doctors and had many blood tests done. My ferritin (iron) was low so I have been taken iron tablets for about 9 months now.
Been back to the doctor and ferritin levels have gone up but still on the iron tablets. I still get tired very easily. The doctor says 'it's one of those things'
It affects my work and social life.
I was wondering if anyone else with coeliac disease feels like this and if it could be linked?
Any help appreciated. Thanks!
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BeckyC
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My daughter is the same, ever since she was diagnosed with celiac she has suffered from chronic fatigue.
Her ferritin is also very low, it was 9 at one point. She takes iron and has got it up to 25 but is still constantly tired.
I am hypothyroid so my daughter has been checked for this but the results are in "range"
I recently saw an endocrinologist and my ferritin is 65 range 15 - 300 and he said, "to feel well ferritin should be over 100"
I said oh do you mean over 100 for hypothyroid people and he said "over 100 for everyone to feel well"
I thought this was really interesting as even on the thyroid site they say should be over 70 for thyroid sufferers.
So what I am saying is if my daughter and you have such low ferritin levels there is no wonder you feel really exhausted.
My daughter has just had a full iron panel test which includes, serum iron, ferritin, transferritin and saturation and when she rang for the results they all came back "in range" but the very low end of range, and said all is O.K. She has made an appt. for next week and I am going to go with her and point out what the endocrinologist said to me. It will be interesting to hear what the Doctor has to say to that.
This is really interesting! My ferrin levels went down to 6!! Then up to about 48 then down again to 24 when I was told to take one tablet per day instead of two! Could you let me know what the doctors says? I think I might just try taking two iron tablets a day to see if I bounce back! Seems silly not to listen to the doctor but they are just no help sometimes!
Yes I will let you know, as soon as my daughter's level goes up a bit the G.P. says cut the iron dose down, then her level goes down again like yours.
I am going to say to the G.P. I think it is time to look WHY
the ferritin is so low, is it the celiac causing it or something else.
When she was first diagnosed she asked about supplements to take as she thought by cutting gluten out she would need to take additional supplements and he said even if you cut gluten out you will still get all the nutrients you need. Well not iron by the looks of things.
Thank you. I asked the doctor if we should find out why the ferrin levels goes up and down so easily but I didn't really get an answer!! Good luck to you and your daughter!!
Hi Becky, what interests me is has anything changed in your life in the last year? And do you eat oats and or super market malted breakfast cereals (ones that are below codex)
The reason that I ask is just because a food doesn't appear to upset our guts it doesn't mean that low levels of gluten aren't affecting us.
In my experience the longer a coeliac is on a gluten free diet the more sensitive we become to gluten. So firstly I'd look at your diet and make sure that everything is what you think it is, this is not a criticism just my first thoughts and what I would eliminate first.
I'd then ask your GP for tests to eliminate other things like thyroid issues and not settle for 'it's one of those things' this is a cop out to me and you want to find the the cause of your anaemia rather than treating it with iron.
Some medications can cause anaemia and it is worth checking out any meds that you take for their side effects.
I don't slip up with my gluten free diet. I always read the labels! The doctor said to me that my iron levels have been low for years (about 6 years from when I started getting testes for coeliac) and it might just be that my body has had enough and can't cope anymore! I've lost count on how many times I have been back to the doctors so trying to figure it out on my own now!! I looked at that link, thank you. It's interesting that other people have felt the same. Being on a gluten free diet doesn't mean we miss out on anything.. Does it? I mean we can still eat meat veg and all the vitamins we need?
If you haven't already, I would suggest looking at your B12 and vitamin D levels.
I've found that my B12 needs to be in the upper ranges of normal for me not to have any tiredness and concentration symptoms linked to this.
I also found that having coeliac disease caused severe vitamin D deficiency which again has been a source of tiredness/fatigue.
Tiredness and concentration issues can also be linked to mild adrenal insufficiency, so it might be worth getting your cortisol levels checked out by way of a blood test. Again I know about this one!
Another thing to bear in mind is that in some people, lethargy and concentration issues can be a sign of depression.
It could be a sign of thyroid problems. If your personal T4/T3 ranges don't fit in to the accepted 'normal' range then there's a chance you might be getting missed. Some T4 is converted to T3 in the guts - around 10% I think. If you're lacking the enzymes (?) to convert it, then this might have impact on your overall well-being.
I have had loads of blood test. I'm sure thyroid was one of then and that was fine. I have recently bought some vitamin B tablets to see if that helps. I will look into the other things you suggested. Thank you!!
Yes, loss of energy and fatigue are both symptoms linked to coeliac disease. I think it's normally because of the low levels of folate, zinc and iron linked to coeliac disease. Unfortunately I have all of these despite being completely gluten free..!
I used to take folic acid and iron tablets by prescription, but I don't find that they really help. I don't want to rely on medication that is unnecessary. I've found that eating loads of vegetables, fruit and other healthy foods, and exercising a lot has helped significantly. I know lots of GPs say that and it doesn't seem true, but it does help me a lot!
i have been diagnosed for 3 years now and have the same symptoms even fall asleep during the day.i get the impression gps do not no enough about the after effects to help.
I suspect I have celiac disease but even if I don't I'm definitely gluten sensitive so I have gone gluten-free you might want to research what's called leaky gut the theory is that some people who are Gluten sensitive or persons with celiac disease may also be sensitive to other grains such as corn and rice. I am gluten-free and have been for six months and now I'm going to eliminate grains in an attempt to see if my feet improve because I've had neuropathy in my feet for at least five years that has progressively worse. so now I'm going to do gluten-free and grain free and see if grains may still be an issue for me in general I hope I didn't confuse you but it might be something you want to explore. U tube has some great videos on the connection between grains, gluten and "leaky gut". Good Luck
I am also so fatigued that if a bus came at me I could not get out of its way,my GP says it is my age!!! ( 53) I pointed out that my same age pals do not suffer thus and, he just told me to be grateful for what I could do and not moan about what I could not do---- I do know I get a lot more joint and muscle pain if I eat gluten.
People in their eighties run marathons, what I wonder would gp say about that? I'm the same as you 53 and knackered! there must be a better way, i'm trying to give up sugar, desperate or what?
I am 54 and a postman of 23 yrs,celiac for 26 yrs and over the last few yrs I have noticed how much more tired I.am.after a day's work.I need an hour's nap in the afternoon just to function.as for the aches and pains I have too many to mention.
I think you've raised a really interesting topic - so my thanks go out to you and to everyone who has responded; because I've also enjoyed reading the posts on this thread.
I agree with you when you say that it's nice not to feel like you're on your own and I've found it really uplifting to be reminded of that fact.
I also agree with your opinion of the GP's! I have been to so many doctors, nurse and hospital appointment in the last 18 months, my head spins just thinking about it - and like you I'm still having some fatigue issues (however I shudder to think what I would be like now without having had their help!).
Having read your new posts, I thought I would say a little more about my vitamin D.
I mentioned before that I had a vitamin D deficiency which was caused by having CD. Whilst I am not currently vitamin D deficient, I seem to have a similar problem with it as you may do with your iron levels. To give you a little more detail, I was put on massive doses of Vitamin D by the hospital for three months last year. As a result my D level shot up from 10.2 to 121 (i.e very low to rather high). However in the last six months and despite taking a 'normal' prescription daily dose of Vitamin D, my level has dropped to 73. If it keeps dropping at the same rate, then I will be clinically deficient again in less than six months time if I take no action. Moral of the story? I strongly suspect that it means that my guts have not healed properly - and might never, given I was undiagnosed for decades. Despite it being six years on for you (rather than 18 months for me), I wonder if you are also still being affected by the damage coeliac disease did to your guts before you became gluten-free. It might be a reason why your ferritin levels are fluctuating so much when you drop down to 1 tablet and it could be affecting your absorption when taking 'standard' doses of any supplement. I now have B12 via injection for this reason. I mention all this here in case it helps you, or gives you food for thought.
It has made me feel a bit better knowing other people feel the same. I was starting to wonder if it's all in my head (even though I know it's not!!) thank you!! After reading the replies I wonder if we so just need more of what everyone else needs and the 'normal' blood test just isn't good enough for us and we need to be above normal!
I have also suffered from this and my blood tests were all good except for ferretin so had a 3 month course of ferrous sulphate.It is definitely linked, my GP has assured me, as people with full level of gluten intolerance, (some have lower levels), still do not absorb all nutrients in their food.. I keep strictly to my diet and unfortunately don't know what the answer is. I would be interested if anyone has found a remedy.
Hello Becky, I have stuck to a strict gluten free diet for the 8 years since i have been diagnosed. I have still suffered periods of tiredness and poor concentration over that time. Gradually I have learned through reading about coeliac disease and having blood tests done, that for some people the gut never heals properly - it is so badly damaged from when you were eating gluten before diagnosis. This means that coeliacs can suffer from malabsorption/malnutrition even after diagnosis. It also can mean that even if you eat a super healthy diet as I do, that you still need supplements. the key ones for me have been iron tablets and vitamin B complex. Vitamin B complex is amazing for me - like taking speed it totally makes me feel alive and energised - a bit like coffee. It's a real pick me up. To the point where I have to be careful not to take too much otherwise I cannot sleep. I also take additional Vitamin B6. Vitamin B6 is included in B complex - but at a very low level. So I take about 12.5 mg B6 after each meal and it stops me getting sugar cravings. Good luck.
Thank you so much for your reply!! It's really good to know. I take 1 iron tablet a day and I have vitamin B-100 so I am going to try that for a few months and see if I feel alive again!!! I do also have to take two calcium tablets a say which I think have vitamin D in. I'll have to check that one. I don't know a lot about vitamins and how much is too much!!
Just a few words on food, which I hope may be helpful ... You need to be eating adequate vitamin C in order for your body to absorb iron; red meat and organ meats, like liver, are a good source of iron. Drinks such as tea, coffee and milk tend to lessen the amount of iron absorbed. Vitamins like vit D are transported and stored in fat, so eating "low fat" is not a good idea.
Be careful not to overdose on iron tablets.
My energy levels have increased since I moved towards a Paleo-type diet, but my iron levels were not as low as yours.
Interesting points Penel and just to add to this caffeine also destroys the calcium in our bodies/bones and exacerbates osteoporosis and osteopenia.
I was diagnosed with CD because of severe anaemia and this is how they realised that I have microscopic colitis and I control both with diet and do not take med's or supplements and I'm now a blood donor and my philosophy is 'I eat myself healthy' so if I can do it so can others.
Thank you all so much for your replies!! It has given me a lot to think about.
It seems that people with CD might just need that little bit extra. (The doctor doesn't seem I think that though)
Perhaps the stomach doesn't ever fully heal which is why we need more!
I have no idea how long I had CD before diagnosed. As a little girl I would always complain about tummy aches. I am 25 years old and have got osteoporosis (which I have had since at least the age if 19) so i must of had it for quite a while before knowing to do that damage!
I think I will have a look into vitamins and what I should take and how many!!
I phoned the hospital today to speak to the doctor who specialises in CD. Told her about what I eat, my work, home life, exercise,sleep, everything. She came to the conclusion that feeling that this is nothing to do with my CD but it is because I mentioned I have a cat who wakes me up at night sometimes!!! Her advise was to lock my cat out! I mean I know broken sleep can affect you but I feel like she was just trying to find an answer to give me! She said if you follow a gluten free diet then we should just be like another other healthy person... I'm not so sure!!
Thank you all again! Please keep posting anything you find out that helps or doesn't
I tried to get some answers from the gastroenterologist regarding my fatigue just over a month ago. He said he couldn't help and to go talk to the endocrinologists. I tried to get some answers from the endocrinologist about 10 days later, again regarding fatigue. He said talk to the Gastroenterologist. Go figure! I literally cried in frustration at the both of them. So they blamed it on depression instead. Grrr...! I'm almost certain it's down to having coeliac disease.
I do have a cat but she is banished to the kitchen at night - so in my case the cat is 100% not guilty m'lord....
I completely understand your frustration! They make us feel as if we are crazy!!
I am going to try taking more vitamins and try to forget about the tiredness and not worry for a few months to see if that helps as if doesn't look like we are going to get any medical help from an expert!
Three years ago I became unwell, diagnosed as coeliac a few months later, low ferritin (5) and Vit D (27), still joint pain and fatigue - gradually things did improve but they didn't get me back to the me that existed before I became ill! I came off the supplements and six months later the readings were back to the low levels. Over the last year I have been diagnosed with a large kidney stone, which has just been operated upon, and the infections it caused have not helped me much - I've been on antibiotics for the best part of a year.
Every time it find someone interested in pursuing things further they find something new and blame everything on that, the latest one is that I am going through an early menopause, which was enough for the rheumatology department to lose interest in my joint problems and discharge me.
I feel like I am banging my head against a brick wall as the answer always seems to be take these supplements/you'll feel better when xyz is sorted out/it's your age/the weather rather than any investigation into the underlying causes!
I'm so sorry you feel like this! It sounds like you are well and truly fed up of feeling unwell!!
I just wish the doctors would listen to us!! At this point even if they just said to me that unfortunately people with CD do feel like this and need more supplements instead of making me think in going crazy haha!
I have just emailed coeliac uk. I really want answers for all of us.
Hi SpinningCat ...... Just catching up on this site and read your letter. Following a dose of antibiotics have you ever been recommended to eat some 'live' yoghurt for a while? As I understand it even specific antibiotics generally destroy our intestinal/gut flora ..... which are very important for optimum health....... at the end of a course by eating some 'live' yoghurt the flora will be restored. Best easily available 'live' yoghurt I think is YeoValley, the natural Greek style one extremely good; I can get it in ASDA or Waitrose
Becky - I am a very active, and seemingly healthy 47 year old coeliac. diagnosed 3 years ago. this year, I have suffered so much with fatigue, headache, eye soreness, that i eventually went to the docs. To say I am sick of sitting in a docs surgery is an understatement, because I look really healthy - but I digress. after another round of continuous blood tests, the doctor has diagnosed a deficiency in vit B12 and I have been having injections for about a month now. I already take an iron supplement which is prescribed and I often take two a day as I feel better than on one a day. I asked about depression, but I don't think I am. I am an upbeat glass half full person, but some days I really struggle to get out of bed. I am not sure if the B12 is yet starting to work as my levels aren't up in the normal range, but its worth bugging your doc to get your B12 checked. My doc kept saying, you have CD, go away, sort your diet out but I am glad I was persistent with him. I think the tiredness is just part and parcel of this disease we have and the docs have still got a long way to understand it and provide suitable care.
Good luck in getting the right help. I hope you feel better soon.
I was so anaemic my ferritin level was 2 and no longer able to tolerate iron tablets. Iron injections (nasty) have put me at a tolerable level but it doesn't last so I'd say look at your diet and ensure sufficient iron. Juvella do a cereal "Special flakes" on prescription - a 30g bowl has half the daily iron requirement - which is tiny (like Variety pack size!), whack some dried fruit in for interest (and extra iron). I avoid the Juvella fibre cereal as it gives me severe gut ache.
Not all iron tabs are the same - Ferrous Fumerate supply more iron/tablet. Take with fruit juice, don't take near tea, milk or calcium.
I can relate to all these posts..after being diagnosed coeliac, I still suffered with severe tiredness as well as 'brain fog'. Went to several gps and after months of illness decided to try a private nutritionist. Ran a few tests and discovered I had candida - a yeast infection in the gut. This is really common in coeliacs and has hundreds of different symptoms. For some unknown reason the nhs do not recognise candida. After going on a strict diet and taking herbal supplements as well as probiotics, I'm completely back to my normal self. Definitely worth seeing a private nutritionist if that's an option.
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