Effects of coeliac disease on mental health?

I believe that there is a clear link between coeliac disease and mental health. The internet offers a wealth of articles (many of them quite scholarly) about the suggested link and I feel that the basic science behind them is true. If a being goes several years or decades with improper absorption of nutrients and inefficient digestive processes, the combined effects must affect the overall health and mental health of that being.

It can be a life-changing experience to receive this diagnosis, go gluten free (and in my case dairy free) and 'see' things so differently following years of 'fog.'

23 Replies

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  • I can only speak for myself, and going gluten free made a huge difference to my outlook on life. i no longer feel as if i'm out of tune with everybody else. As i'm only 5mths gluten free i still get days when i feel mega tired and its like walking in wet concrete, as i have to make myself get up and carry on, when all i want to do is go to sleep. thankfully those days are getting less and less.....

    My thoughts are much clearer now, and i can concentrate on things without losing my train of thought. I use to kinda lose myself, i would go into a room to do something, and totally forgot what i went in for. Or i would look out of the window and kinda drift off into world of my own....but now i seem to be on the ball 24/7.......

    janie

  • Hey janie, u hit the nail on the head with feeling out of tune with everyone else. Only just seen your post after writing mine and that describes what I wanted to say perfectly.

  • i can totally identify with this, i have been gluten free for a little while and feel so much better already, i have suffered with depression and mind blanks and also felt like i lived in a world of my own at times, so weird that gluten was the cause of all this

  • Yep, I'd say there's a definate link. My anxiety and always feeling slightly not right has gone since stopping eating gluten. I can remember not feeling right from a very young age. I've previously suffered from a range of mental illnesses throughout my life which I now believe to be linked to ky diet.

    Also, when I became ill last year my mood when eating gluten changed almost instantly and I became very miserable, down, unable to.deal with noise and people.

    What have you noticed yourself?

  • I think this is a very valid point because gluten can cross a coeliac blood brain barrier and is toxic to us so it's bound to have a negative affect on our brains and our moods.

    I also felt human again after diagnosis and was relieved to have been diagnosed but there is the psychological side of being a coeliac which is left to the individual.

    Many coeliac also suffer from depression and or feel isolated because they can not eat what everyone else can.

    Here's a link to past blogs and questions on GFG relating to depression:

    glutenfreeguerrillas.health...

  • Before being diagnoesed i was very depressed, but once on the gf diet, i came off antidepressents within two weeks, I still find if im 'glutened 'one of the frist signs I have is weepiness,

  • hi all i have only been on a gluen free diet since april this year and i must say its not going to well i feel so sleepy all the time and i snap at any little thing i feel so down and low i have doctors on monday to see if they can give me something to help me as all i want to do is sit and cry all the time i find it very hard at times to find food that i like i think its just getting used to it all at the mo i am only eating fruit and fish on its own as i really dont fancy the taste off anything i have just found out i am ment to be taking vitamins to help so i am off into town to get some and give them a go i hope i can get help as i have 4 sons at home for the school hols and i have no engey to do things with them or go out and about

  • Hi,

    I find fruit does not help me at all and makes me worse - don't ask why i don't know.

    Try a calmer diet, of cereal (doves farm buckwheat), fish, with chips, chicken, salads, red skin potatoes only for chips etc, as there is something in white and tomatoes.

    You will get right - keep going

  • Hu Deltauk, I'd check out fructose intolerance and fruits are in 2 categories low and high fructose. So you might be OK with low ones.

    Also tomatoes and potatoes are part of the nightshade family and some people have issues with these.

  • Howes56 - bear in mind anti-depressants can make you feel a lot worse before they make you feel better. So my advice is always look for the root of the problem before being persuaded by your GP to take any drugs to solve the problems. It is also well worth you asking for your Thyroid, B12 and VitD levels to be checked. Thyroid and B12 problems especially can make you feel very low.

  • thank yo for your advice i have got in to see my own doctor this monday morning so hopefully i can get myself sorted out

  • The effects of coeliac disease are highly differentiated though clearly there are commonalities which enable it to be defined as a profiled disease. Without doubt, I feel it is fair and true to define it as a disease of body, mind and spirit and all of these submissions add to that definition.

  • I have Ceoliacs disease and was diagnosed with Border Line Personality disorder when I was 18. The problem was that the drugs weren't working effectively because I was Ceoliac and wasn't diagnosed until I was 22.

    Since I have been gluten free my medication has been able to work effectively, not only that but I feel more motivated to engage in my recovery and my spells of depression have been less frequent and less intense.

    I am so relieved someone else has pointed this out, because my doctors have seemed massively sceptical about the link, basing it JUST on the ability of my body to process my medications.

    I do think it goes beyond this, I feel better in my skin, healthy and happy. Just getting rid of the fatigue made me feel a million times better!

  • From age 10 I experienced physical symptoms and colorectal problems requiring examination and investigation from then on - with strict guidance to eat a diet heavy in wheat and other cereal fibre! My dad was the same and used to shovel loaded tablespoons of bran onto his morning bran cereal. I would describe the period 1985-2005 as 'lost years' in terms of the way in which body, mind and spirit were working. I was not diagnosed with any mentall illness but felt dreadful daily - following normal food and was not at peace in many ways. In 2000, I actually began to collapse physically with vaso-vagal episodes and experienced emergency admissions to hospital to cardiology - never a heart attack. My doctors suggested an SSRI with prozac style profile which I eventually agreed to following the worst episodes in Autumn 2000. This relieved the immediate fears of just literally dropping dead and I settled but physical symptoms in bowel etc continued. In 2003, I had withdrawn from the medication with no ill effects and experienced another massive vaso vagal episode in London and was hospitalised. I was put onto it again and calmed down - then I tried a low carb diet and without realising it, eliminated gluten from my system and suddenly became like a kid in terms of my health and well-being. I got off the drugs and noticed the well-being continued- as did the unconscious elimination of gluten from the diet. I was feeling great. In 2005, the physical/bowel symptoms returned and they were so bad, the doctors suspected cancer - I was clear. Then they did the gliadin blood test and the rest is history. I was 39 and have counted the last 7 years as my real life. I sometimes look back and consider the person I was from 1985-2005 with some regrets and shame but I am just relieved I have answers and understand everything - this shines the light into what could have remained dark corners of my life and I feel saved - literally. My poor father was not diagnosed until he was in his 60s and required two stays in acute psychiatric wards (voluntarily) resulting in heavy medication which he could not withdraw from - but his mental health dramatically improved following elimination of gluten from his diet. He was never ill again and was totally recovered in so many ways.

    This is why diagnosis and strict Gfree diet have been a relief and not chore for me. Today I am the president of my own company and have two wonderful children and a supportive, lovely wife/partner. My next target is to lose some weight!

  • DaveT - an amazing and inspiring story! So glad you shared it! I relate, on a much milder level, to what you are saying. I found that the intial zest for life gained from coming off gluten was unfortunately short-lived, but I have stayed gf as the minute I ingest any gluten(always accidentally) I'm ill both physically and emotionally for days afterwards. It's no real difficulty staying gf (except when we are out/at other people's homes) but I'm thinking there's maybe something else I also need to cut out to be properly healthy and full of life again. I'm in my mid-40s now and feel like so much of my life was almost daydreamed away because I was just living in a 'fog'. The fog is largely lifted now, but not completely so I still fall back into old ways, perhaps just due to force of habit?

    Anyway, just wanted to say THANK YOU so much for sharing your experience. It has helped me feel like less of a freak :) Good luck with your weight loss!! Personally I have taken up running and after 3 years of hard work it's starting to pay off - and since going gf about 6 months ago I'm really noticing benefits. I also do a fair bit of outdoor cycling in our local forest... just throwing some ideas out there! Thanks again.

  • My advice is to eliminate dairy from the diet for c. 6-8 weeks and see if it changes anything. My case was so bad my git will not produce lactase to handle dairy sugars and proteins avenin and casein. Thoughts?

  • Thanks for this DaveT. Yes, I have wondered about the impact of dairy. I try to eat low-dairy/no-dairy depending on the situation. At home it's easy. When I'm out or at friends' homes it's harder. Sometimes the only 'safe' option seems to be a baked potato and if I can't even have butter on it it's really not much of a meal (altho usually I can at least have tuna!) :) I've cut out caffeine as that seemed to disagree with me. Wondering now about fructose as well but I'm loathe to give up fruit! Argh! Onwards and upwards...

  • I always had trouble concentrating at school and was a slow learner, spending weeks and sometimes months off because of health problems. I was anaemic and nobody could figure out why except to say I had a problem absorbing iron for some reason, so was always taking medicines or tablets with iron in them. I was always tired and depressed and felt picked on because I was small and always ill. I was never happy. I don't know how, but I managed to catch up with the education at 16, by which time I'd given up taking all medicines and refused to go back to hospital. I had problems forming relationships with girls until the girl I married came along when I was 21. I was so shy. I still, and always have had an inferiority complex.

    A career in engineering led me to becoming a full time student for four years, missing becoming a chartered engineer by failing one exam out of twelve in 1973. I had no doubts about my mental capability, leading the company I worked for from drawing boards to full blown computer aided design and analysis. In later years I got what I thought was IBS and my self confidence began to fail, making me tired and miserable. Doubting my mental ability I took a Mensa test and was surprised to find my IQ was fairly high (but not high enough to join Mensa of course) Diagnosed with coeliac disease nearly three years ago and going gluten free hasn't helped much.

    I am always being told that I can't remember things, yet when I ask younger work colleagues about things they learned a couple of years ago they can't remember.

    Now 62, I am having to use things that I learned 40 years ago back at college to do my job.

    I know people think I have a poor memory. I see emails from senior colleagues saying things like "make sure Phil comes back from that meeting with all the answers".

    Since 2001 I have shifted between four completely different engineering environments with completely different requirements yet I have managed to cope and even excel ( nominated employee of the year last year, and winning team of the year). My short term memory probably is getting worse, but is not as bad as others. This has to be an age thing I think, not anything to do with CD.

    Being diagnosed as a coeliac has seperated me from those I work with because they seem to have found a screw to turn to put me down whenever they feel like it. I guess this is the inferiority complex coming into play. I see no future and am not happy because I've seen my pension funds run down over the last few years.

    This in itself is depressing, and makes me not a good person to work with. All those around me seem to be bright, happy and successful, and looking forward to the future. That makes my lot even worse.

    So, has Coeliac Disease affected my mental health? If it caused me to be a slow developer, yes, most definitely. That has had a lasting effect that will be with me until I die (probably in poverty). Apologies for this jumbled up brain dump of a reply but if you can pick anything useful out of it its been worthwhile.

  • Hi Phil,

    Memory problems amongst coeliacs can often be caused by thyroid and B12 issues. Irene an admin on here thought she was going mad at one stage. Was weepy, low and couldn't remember people's names, what she had gone into a room for etc. Eventually she was diagnosed in quick succesion with pernicious anemia and thyroid problems. So I guess what I am saying is - don't feel too sorry for yourself. Get your GP to do an annual check on your B12 (active and inactive levels as these are important), VitD, iron and thyroid.

    In terms of work we all have ups and downs with colleagues. It can be hard and easy to feel the odd one out especially when people bring food into meetings that you can't eat. I'd suggest you get the ball rolling and pre-empt this and bring some great tasting GF treats (minus the packaging) and get them hooked on great GF food. Sin cakes (available in Pod) in London are great and should be available online.

    Sadly you can come across assholes in all walks of life - work is often rife with them. Yet from what you've said your work and team has been praised. So if I was you I would either ignore any perceived jibes or give as good as you get. Often bullies from the playground thrive in companies where there isn't a strong work culture to stop such behaviour. Don't forget that life is hard for many people and you're not alone. Pity the poor graduates coming out of Uni with huge debt and little work prospects. We just have to battle on and make the best of what we can in life. One technique that might help you is keeping a private diary of positive things / moments that happen each day. Sometimes it's easy to notice the bad and forget the good.

    On the plus side much of the damage from CD can be healed although this doesn't happen in all cases the brain is an amazing thing. You only have to view a few documentaries about stroke and brain damage victims to realise how much we can recover.

  • C-Disease is a registered chronic illness - face down any bullying and lodge any serious stuff with your human resouraces department

  • As a cd sufferer for all my life, but diagnoses at 27 years of age (now 50 plus) I can remember the foggy days. I had a lot of time off school, then work. Although I have an outgoing personality, I have also more recently had a diagnoses of bi-polar. Have had a stay in hospital voluntarily many moons ago, but since starting meds for bi-polar I feel my life has turned around. I am very positive. I now prefer the glass that is half full etc. I take regular exercise and find this helps me. I bake and eat gf cake, this also helps! Be kind to yourself is my motto. So if there is a link between cd and mental illness, I probably fit the bill. I also take thyroxine - but that entitles me to free prescriptions - ie, gf flour = more cake ! ! !

  • I have been glutened badly twice in the last 4 weeks and all my depression has come back. So this makes sense to me

  • Hi All

    There is a link between abnormal tryptophan metabolism and malabsorption, (affecting brain chemistry) so despite being gluten free my gastroenterologist says there is much healing to be done especially in the case of recent diagnosis and older people (like me!). If you suffer lactose or fructose intolerance makes it an ongoing problem. So if you are still gassy, farty and belchy (sorry here to any timid natures ;-) ) then it is worth getting that checked out. (Despite everything, I'm still waking up to a gut that sounds as though someone is cleaning out the drains when I don't do truly functional eating!) Checking that you don't have iron deficiency anaemia is really important too - the feeling of constant low battery is definitely not mood enhancing.

    So being coeliac, I have to contend with malabsorption and also with ongoing gut pain (from the gas) and being a social pariah (unless all your mates are fellow coeliacs), and every time I leave the house I have to plan the next time I eat ... no wonder I was turning into a miserable old git. Good job there are rays of hope to knock me into shape - (1) being one of the lucky ones on a chemo ward because I was only receiving iron for anaemia, and (2) for the first time I am starting to put on a bit of weight! So perhaps there is some light at the end of the gluten free tunnel.

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