How many of you still suffer fatigue ... - Gluten Free Guerr...

Gluten Free Guerrillas

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How many of you still suffer fatigue & brain fog on a strict GF diet?

FionaGFG
FionaGFGAdministrator

Despite being GF and having 0 scores in your regular blood checks for anti-bodies to gluten - how many of you still experience fatigue or brain fog? Has it gradually lessoned over time or do you have lapses where you have problems for no obvious reasons?

28 Replies

I suffer from lack of concentration, is that brain fog lol. Some days i can feel the energy just drain away and have to lie down is that age??

I get brain fog and fatigue. i have fibromyalgia tho so I put it down to that.

Liana
Liana in reply to Michelle78

I'm the same ... I also have Fibromyalgia. When I'm in a flare, I have brain fog, pain and fatigue. I don't think mine has anything to do with gluten intolerance or being Celiac. I eat strictly gluten, lactose and legume free.

Hidden
Hidden

This sounds all too familiar. I get a headache running up through my left eye- something Nurofen tension suppresses.

my memory is so bad that I put it somewhere safe and cannot remember where it is !!!!!!! yes- to fatigue,yes- to muscle and joint pain.yes- to going to bed and getting up the next day and feeling worse than when I went to bed, my eyesight also becomes useless...In fact I feel like I have been run over by a bus and it has reversed over me for good measure----yet perversely a day or so later I feel like a 20 year old and can bounce along with the rest of the healthy population

Hidden
Hidden

I still get brain fog and fatigue it still a problem. i am trying to change my diet to less milk as occasionally milk gives me similar symptoms.

This all too sounds like me. I'm up and down, some days I feel twice my age. I thought it was just me and that perhaps I wasn't being strict enough with my diet. What's the answer? Are we just to put up with it?

Remainer
Remainer in reply to mel-mel

I'm the same, constant low energy and fatigue. I thought adopting the gf diet with coeliac disease, would increase my energy levels.

I have been on the specific carbohydrate diet since the middle of february and I've never looked back. I'll get brain fog if I slip up and have something with a little sugar in it or something. It is so so restricted but if you're still having problems I'd recommend it, even just for the short term, 6 months or so.

maidforit
maidforit in reply to suzystew

Hey Suzystew - I've read little bits and pieces about this. I'd love to hear more about it and what foods you eat and the difference it has made to you. Please tell me more.

suzystew
suzystew in reply to maidforit

there's a great website called peacanbread.com. It's easier to say what you can't have, it's right back to basics. No sugar, no additives, no preservatives no grains and no starches. It based on findings by a lady called Elaine Gottschall, she has written a wonderful book called 'Breaking the vicious cycle'. I bought that and a couple of SCD reciepe books of amazon and started the day I had my last colonoscopy (since I was empty anyway). You need to watch for hidden things like parsnips and some fruit you need to aviod. I have 3 kids and a hubby who all like chocolate and crisps, usual junk. I've found it difficult having things like that about, when I slip up I feel ill and the brain fog is awful to go back to. Can't believe I have such quality back in my life.

maidforit
maidforit in reply to suzystew

Oh fantastic, thank you. I've found the site and I will have a proper look at what it recommends later on when I've had some kip. It seems like a lot to take in. Giving up starches and all grains sounds like it doesn't leave much left to eat, Have you been doing this for long?

Yep to all your questions; have been as gluten-free as I can be (bar the occasional packaged 'gf bread' and 'gf breadrolls') since January (not long, I know, but it has made a great difference, esp in my skin problems) but some days there is no energy (sometimes wake up after a full night's sleep feeling more tired than when I went to bed), no enthusiasm, sometimes downright sadness/depression, other times inexplicable anger/anxiety...as for brain fog - it comes and goes. I have tried to cut out sugar as far as possible but not sure if fructose is a problem (I eat A LOT of fresh fruit). Also gone lactose free, and even coffee free (although at home we tend to drink decaff, but I've even largely cut that out)...

Hidden
Hidden

Have you had your Iron levels, B12 and Thyroid checked, the trouble is all of these things have the same sort of symptoms, sometimes i feel ill and actually dont know which illness it is playing up , it makes it very difficult to treat.

Paula x

Diagnosed at 71, coeliac symptoms having been triggered a year previously by a bad fall downstairs (walking frame for a month). Still suffer with brain fog some days and fatigue (but wonder if it's just old age!). What I do still suffer with is diarrhoea, mostly first thing in the morning. Doctor and dietitician put this down to IBD but wonder if it's something I'm eating although I would say I'm stictly gf. Annual blood tests show I am not ingesting any gluten.

Mikeila
Mikeila in reply to MaryDB

Guys , i'm not pessimistic but after 9 years of GF diet is kind the same like first month. At least for me.I made peace with my life even if sometimes i want to jump in front of a train.I'm kidding..The worse part is i work only part-time because of this ups and downs.How you cope with your work?Also, is posible to claim DLA with coeliac dissease?

alifhp
alifhp in reply to Mikeila

Hi Mikeila, I don't think you can claim DLA with Coeliac as it is a disorder/disease not a disability.

Mikeila
Mikeila in reply to alifhp

Hi,is a cronic medical condition.in other countrys this disease is sow like a disability.

When you say " Brain fog " what you mean ? I am getting on a bit and put it down to age ? Someone did say that lack of iron can lead to memory loss / lack of concentration ?

Yep - I get fatigue too. and i presume the feeling where my brain doesn't work and has partly been replaced with cotton wool is the brain fog you are on about.

No idea how to fix this. I think I may need to eliminate more food types to see if this helps?

I will get blood tests as per a previous post which said everyone who is coeliac needs these:

- blood tests (full blood count, Iron, Thyroid function, B12, folate, calcium, anto-bodies to gluten ttg and ideally cholesterol as the change in diet means we're more at risk of this rising)

- weight checks

- height checks

- after initial diagnosis a Dexa bone scan of the hip joint to assess if there are signs of bone damage & thinning due to coeliac disease

I've just started taking vitamin, iron and calcium supplements so I'm hoping that they will help.

Never heard of brain fog before... is it just another way of saying memory loss ?? If so I have discovered in the last year its quite frightening !!! so many times I can be mid sentance and I forget the word for something or the name of someone ... its like its just gone from my memory... is that what you are all talking about or have I just got altziemers ?? (im 44 btw)

I struggle to find this word and eventually I do but its very scarey!

I too have similar problems - I sometimes struggle to understand what people are saying to me, but some days I am absolutely on fire (not literally!).

I feel embarassed at work when I have a "stupid" day. I do eat a lot of sweet and starchy food - maybe it's to blame?

Hidden
Hidden

I have just read this and i agree with most comments about feeling lethargic,even after 25 years i still get good days and bad,i have tried to explain to work mates but they sometimes seem to think i,m a hypochondriac or something.most annoying.

I think we have to be very careful here as undeniably brain fog can result from coeliac conditions, but can also result from a number of other issues:

- Age

- State of health

- Blood sugar levels

- Hormonal disposition

- Amount of sleep

- Medications

- Stress

- Alcohol/drugs

- etc

I suffer from brain fog occasionally but rarely, if ever would put it down to being a coeliac. My wife had serious problems with this and it turned out as she was going through the menopause, her hormonal levels were imbalanced. Having got those sorted, she is sharper, etc

Not denying it exists, just be on the alert for one or more of the above which can also have an effect. I would argue that amount of sleep and stress levels probably have a more common effect than anything else.

for all of us, we have been a bit through the wars with CD. I am doing a degree in law business and politic, but sometimes i can't remember what i want when I go out of my living room door. One thing that really helped me was ginko biloba (rotten speller-but it is something like that). It helps the blood circulation, so of course enhances the oxygen levels getting to the brain. It is only cheep and they even sell it in Morrisons now. if anyone wants to try it for a month (that is about how long a supplement takes to work on the body). If you feel a lot better, then it is not the CD. I have 7 disabilities and with a lot of the rubbish pills I have been told to take, it is hard to know what is affecting you. Does very much sound like it isn't CD though. Red meat has B vitamins that help brain function, ion in the easiest form for the body to digest, zinc and selium that boost immunity (ours is poor until the colon mends) and they prevent cancer too. So I wouldn't go carbs only, myself.

Check out Vasculitis. I suffer from a Vasculitic condition and these symptoms are very similar to mine.

Actually, better still, check out the Vasculitis area on Health Unlocked. TONS more (genuine) info about this from real life sufferers than you will EVER find on the web.

Vasculitis can come in many forms and no two persons symptoms are the same. There are many many undiagnosed sufferers and a quick diagnosis is CRUCIAL in order to avoid debiliting complications.

If anyone would like further info contact me.

I have been following a GF diet for three - four years and feel no different apart from slightly less IBS symptoms. I am often exhausted and have brain fog. I have never been offered a blood test for gluten antibodies? Are you in the UK? Can anyone tell me what follow-up care I should expect? Thanks

One point that is being missed by gf’ers is that “gluten free” means it may contain up to 20 ppm of gluten. Could that level be to much for you? It is for me so my food is totally free from gluten, not gluten free. Could this brain fog? Be for another reason

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