Been gluten free for nearly 2 months and still feel horrible

[Joshua93]

I've been having anxiety depression and have also been experiencing depersonalisation,brain fog and joint pain and it seems to have gotten worse since going gluten free about 7 weeks ago how many of you are having the same problems and please let me know how long it took you to get better and what helped the recovery. Ps I started this diet without being tested and I've suffered from anxiety,joint pain,depression and brain fog my whole life and decided to give this gluten free thing a go I went to a doctor and she said the best thing to do is do the diet and see how I feel but I'm not getting the results please reply would really put me at ease.

[Pilgrim2310]

Hi there

I once had the exact symptoms you're talking about prior to being diagnosed. Much like you, I was concerned a GF diet wasn't working. It took 4 months for the symptoms to ease. Also, remember that anxiety brings a whole load of symptoms of its own. Just being told I had Ceoliac Disease was enough to ease some symptoms as I was constantly concerned they were due to something more sinister. Hang in there with the diet. It's not an over-night cure.

[Stephpz]

Sorry you're having a hard time. not the best advice from your dr. My boys were gf before tgeir bloods which tgen came back neg. we all have very similar symptoms and i cant get my eldest to stop eating gluten out of the house. or have retest.

First of all yourbody could be detoxing and thats why you feel worse but i think its been too long now so i would be more prone to thinking you are still eating things that dont suit your body. Watch gf products as not all are safe as can contain other cereals that dont agree with you. I find lupin and coconut hard on my tummy too. My dr suggested it was insoluble fibre that might cause ourfamily to have problems.

Its a shame your dr didnt test you first as without glutening yourself for months you wont know for sure what is going on oryou will need to slowly go through many foods to see which you react to the first being an awful idea if you are a ceoliac x

[Hidden]

It takes time to get your system clear, it took quite a while until my symptoms disappeared. It doesn't happen overnight. one day you will wake up in the morning and realise you are feeling so much better. It is small steps every day.

[Saffypig]

Hi,

I was the same, very low and had the symptoms, but it does takes time, also when I was first diagnosed, I was inadvertently still eating Gluten, so you have to really label check, get on some forums, read some GF blogs, and add to FB groups, as you learn lots from others, e.g I loved Marmite, then several months in, realised it wasn’t GF, plus eating out is a flipping minefield, so it’s possible you still ingesting without realising.

Also personally I didn’t notice a massive change until 6 months in, and if I ate gluten ( I’m not coeliac, just sensitive) then I felt flu like, joint pains, head fog so bad, I can barely string a sentence together, but all my tummy symptoms disappeared.. everyone is different.

Being GF does get better, so be patient, keep a food diary, so when you feel blugh, hopefully you can work out what it was and when you have symptoms write those down in the calendar, I have done this since I was diagnosed and as you look back, you realise the good days start to outweigh the bad, then they are few and far between.

Good luck, it’s really not a quick fix, but hopefully the benefits will enhance your life.

[Saffypig in reply to Saffypig]

P.s forgot to mention, as your body gets used to being GF, it may throw up other intolerances, if i eat carrageenan ( thickener, used in Yogurts & Puds) I get 'glutened' symptoms, with that so have to avoid.

[Frodo]

You may well be low in vitamins and minerals though long term malabsorption so should look into that or at least take a good multi vit (gluten free).

[Joshua93]

Thank you for replying guys really appreciate it and you have put me at ease and have encouraged me to continue with this diet the reason she didn't test me (the doctor) was because I had not been eating gluten for about 3 weeks at the time and I refused to eat it again so she said the test would be pointless so she recommended that I do it and see how I feel I mean all the symptoms I have are linked to this sensitivity and I've been suffering for years and only recently heard that gluten can cause these problems so I'll keep trying and see how it goes. Thank you for the replies guys.

[pvanderaa in reply to Joshua93]

Have you also gone completely dairy free?

[Joshua93 in reply to pvanderaa]

Yes I have

[chrissy30]

Hi Josha93, Sorry you are going through so much. I've been a coeliac all my life but not diagnosed until I was in my 50's due to having DH rashes (Dermatitis Herpetiformis)(Forgot how to spell it). By that time bad damage was done to my bones and my general health and I suffered from Anxiety and depression and even Agoraphobia! I was a wreck. But in the end a doctor at Canterbury skin clinic knew exactly by the rash I had what was wrong and I was put on a Gluten free diet after blood tests which confirmed Coeliac disease. But it has took me ages to recover from the worst of it and my bones are only just starting to improve after infusions of Zeladronic acid. But the point is go back to your doctor and get him to get you tested for Coeliac disease and also ask for a biopsy. Not a pleasant procedure if you are nervous so you can at least have a proper diagnosis. As one respondent said to you said that anxiety and depression doesn't help so definitely insist on a proper diagnosis as this may put your mind at rest as it's not the end of the world being coeliac but a pain when you see lovely delicious food you can't eat - use to love apple turnovers and cakes but now I've found M&S do lovely gluten free cakes so not all bad news! I have to stick to a rigid gluten free diet as I have a bad reaction to gluten like terrible stomach cramps and run to the loo and even sickness. I check and double check labels on anything I buy at the supermarket now. If you like drop of the hard stuff you can get gluten free beers etc. It will take time for your body to adjust as damage has been done to the gut with Coeliac disease and the older one is when diagnosed, especially if one has had it all one's life like myself, real damage has been done and it can take quite a long time to start getting stable again. Don't let the doctor fob you off as I had all that being told it was 'nerves' and a touch of arthritis and all that rubbish. Yes I have got arthritis and fibromyalgia and now cataracts and yes nerve damage but at least I know what what causing all my horrible symptoms including depression and anxiety etc and slowly with a positive outlook I've managed to get back some of my life. I still get anxious I admit and there are times I get the 'poor me's' but then I give myself a stiff talking too and just thank God at least I'm still alive and have got my sense of humour back. I also suffer terrible migraines too. My body has been damaged badly due to undiagnosed coeliac as I was malnourished for years and years so thin as a rake and one doctor accused me of self harming and having an eating disorder and another said I had psoriasis. I was none of those but had Coeliac which a new doctor at my medical practice suspected and sent me to Canterbury hospital and lucky me a on the ball Doctor saw what was going on and diagnosed me straight away. I understand how you must be suffering over this as it's horrible to feel the way you do and I can relate to all that and the worry of it makes it worse so get yourself down to that doctor and insist on a blood test for Coeliac disease or be referred to someone that really knows what they are doing. If your doctor refuses then find a doctor that is more sympathetic. I had to go through several doctors and it was only by chance that my last doctor who said I had psoriasis went off to be a vicar (God help his congregation) that a new doctor took over his patients and she was far more on the ball and saw the mess and agony I was in with DH and referred me on. I'm 67 now and suffered for years and lost a lot of my life to pain and illness and even massive doses of morphine due to the pain I was in. But now after recovery which can take time and one has to be patient I can lead a more normal life. I am restricted in some ways due to mobility problems etc but now I can think straight (almost!) and my hubby and I can have a little more normal life. I do hope that this reply will help you as my heart goes out to you suffering as you do as I've been down that road and even tried to commit suicide 4 times when I was younger as it seemed no one took me seriously. Glad I didn't succeed though. So please love get to that doctor and insist and if he won't help then get someone else. Take a friend or relative with you that knows how you suffer or at least give you some moral support. Some doctors just get it into their head that the patient has depression/anxiety etc and they can't always look past that to a physical cause. By the way I use to be in the medical profession as a counsellor and the training I did helped me a lot to understand myself and I went on to try to help others help themselves. I just hope you get a firm diagnoses and it will help you. Please be assured we all feel for you I'm use. Lots of hugs and love to you. X

[Joshua93 in reply to chrissy30]

Thank you so much for that it really helped me and I would like to know if I'm celiac or not but I don't want to start eating gluten again because the doctor said I have to eat gluten to get the results and I'm already 7 weeks in in the diet I'll keep doing the diet and see how I feel thank you so much for that message and I hope all your remaining problems will perish.

[Hidden in reply to Joshua93]

But if you're not coeliac, going gluten-free may not have any benefits. You've sad that you're "not getting the results" - that might be because it's not a gluten-related issue. Choosing a cure before diagnosis is putting the cart before the horse - and it may mean that you are delaying treatment for something different.

I can't say that I'm impressed with your doctor's advice either.

[Joshua93 in reply to Hidden]

But all my symptoms lead to gluten problems

[Hidden in reply to Joshua93]

How do you know? My symptom weren't anything obvious and I definitley couldn't see a link.

[Joshua93 in reply to Hidden]

I don't know what else to do I've been to doctors before and none of them could see what was causing it and I don't want to eat gluten and do the test and start over again

[Hidden in reply to Joshua93]

If you're not feeling better having given up gluten, I don't see the problem.

[Joshua93 in reply to Hidden]

But a gluten free diet is good regardless isn't it I mean it's healthier

[Hidden in reply to Joshua93]

No. If you're not coeliac, wheat intolerant / allergic or have some specific condition, there's not much point.

[Joshua93 in reply to Hidden]

I know but I don't know what else to do I mean what else could cause these symptoms I mean every symtom I have is linked to it I mean I really don't know what else it could be

[Hidden in reply to Joshua93]

Anybody's guess - that's what the doctor should be sorting.

[Joshua93 in reply to Hidden]

I know you right but I'm just pretty sure that gluten is a problem for me and I'll keep doing the diet and see how I go

[Hidden in reply to Joshua93]

I hope it works for you - but do be aware that there could be other things affecting you.

[Joshua93 in reply to Hidden]

I'm aware of that and I think it has to be I mean the doctors tried everything and did blood tests and I went to hospitals and had cat skans and the only thing they found was sinus problems which is also a problem that gluten causes so I mean this is like a last resort really.

[Polaris in reply to chrissy30]

I'm so sorry you have been so unwell. Panderas below has mentioned B12 deficiency. Very few GPs understand PA/B12 deficiency.. Having coeliac disease or other absorption problems putting you in the high risk category of B12 deficiency, which if not treated, leads to devastating neurological damage:

b12deficiency.info/films

The latest BMJ research document with useful summary:

cmim.org/pdf2014/funcion.ph...

Questions have been asked in the House of Lords recently:

"To ask Her Majesty’s Government what action they are taking to address the problems associated with the late diagnosis of "To ask Her Majesty’s Government what action they are taking to address the problems associated with the late diagnosis of pernicious anaemia, in the light of the results of the survey published in the British Nursing Journal in April 2014.

To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed.

Countess of Mar - Crossbench"

theyworkforyou.com/wrans/?i...

[kcnuetz in reply to chrissy30]

That was super helpful for me to read. Thank you, Chrissy30. I am desperately staying away from gluten. I’m only on day 10 and feel super rough. All the symptoms that everyone is saying here I’m feeling so hard. And a flu to add to it 😪

[kcnuetz in reply to kcnuetz]

Just to mention, I started my gluten free diet by the recommendation of Dr. Wallach’s research on basically all pathologies. He and lots of other researchers say gluten is not so great for basically all of us. The protein isn’t processed well in the human body so it attaches to our cells causing inflammation which can make it difficult for our bodies to absorb enough nutrients. I started my gluten free life when I started taking Dr. Wallach’s vitamins and minerals. He has done decades of research and has some awesomely informative videos on YouTube. Just thought I’d mention it. It’s youngevity.com btw I’m hopping in several months I’ll start feeling great getting all the gluten out of my body.

[tmoxon]

Hi Joshua

So sorry to hear how you will feel, I can really sympathise with you. None of us on here are doctors so all we can do is try to help the best way we can by sharing our experiences with others and I know it has helped me.

My advice is similar to Chrissies in that I really think you should aim to have a diagnosis, the symptoms you have described are not the “typical” ones that a lot of people including doctors associate with CD. In fact there are several autoimmune illnesses that could present this way including fibromyalgia, ME or pernicious anaemia so it could be that you don’t have issues with gluten and it’s something else. Your GP has suggested the GF diet, you have done this and feel no better so you really need to be going back to see what they can do.

The situation I found myself in was that in 2011 by chance I did get a definitive diagnosis of CD and DH, now looking back I must have had them for well over 20 years if not before. I knew I hadn’t felt well for many years but the symptoms I had weren’t so severe and were a bit vague, the main one being terrible headaches which I was on medication for. I was really pleased to find out I had CD and went on a strict GF diet, however I found that I actually felt worse than before the diet. The DH didn’t clear up on the diet and I became very despondent at having given up living normally still not feeling any better. To be honest I think I became a bit obsessive about it all and my consultant warned me about trying to find out what was affecting me in regards to still having the rash and advised it could drive me mad if I wasn’t careful.

Last year I gave up dairy and started to feel better, however I am still not 100% sure that this causes me major issues as last year I drank lots of milky cappuccino coffee on holiday and didn’t have the rash. I am still searching for what is causing me issues although I do feel much better now but I do have blips every few weeks and it’s very frustrating.

All I can say is that without my diagnosis I would not have stuck with the GF diet because I didn’t feel better and I would have gone on damaging myself so I really think it is important for you to go back to your doctor and insist they do further investigations into why you feel so ill, if not you could end up several years down the line still feeling no better and still not knowing.

Good luck with it, please let us know how you get on and please don’t be fobbed off, once you walk out of the doctor’s office they have moved on to another patient, you have to think of yourself and make sure you get the best advice possible.

[Joshua93]

But if I go off gluten and feel worse does that not signal a gluten sensitivity because I really don't want to go back to eating gluten.and when i went off gluten I developed new symptoms like depersonalisation and bad anxiety and lightheadedness. can I still do an endoscopy after not eating gluten for 7 weeks because I don't want to start again.ive tried so many thing before I went gluten free I was in and out the doctors frequently going for blood tests seeing psychologists for depression and none of them could find anything except for ear infections and sinus problems.before I went gluten free I suffered from these symptoms since I was about 14 until now I had bad joint and muscle aches,brain fog,anxiety,dizzy spells and chronic sinusitis and no doctor could say why do these symptoms not signal a reaction to gluten in some way ? another thing I've had since all those symptoms started is my eyes started going very yellow and discoloured and really achy

[pvanderaa in reply to Joshua93]

Have you also had your folate levels and B12 levels checked? You could be having a malabsorption issue that leads to depression and other neurological symptoms.

[kcnuetz in reply to Joshua93]

I say keep your progress 😊 Also a lot of people don’t realize that corn and oats actually have their own type of gluten that can cause the same issues. So staying away from wheat, corn and oat gluten is best.

[upnabout]

As many have said symptoms can take quite a while to subside after going gluten free. It's not easy eating gluten free, but I hope it will help you. You'll also eat gluten by mistake a few times and probably on purpose too. I found that set me off for roughly two weeks each time - even a tiny amount. It was impossible to see the wood for the trees really. Eventually I made fewer mistakes and gradually felt better. I was quite sensitive to dairy for a year or so but that's calmed down now, but I can still only cope with a limited number of eggs. Beware of the hidden gluten - mainly spices, ready grated stuff and contamination. It may turn out that gluten is not your trigger. You could also ask your GP to refer you to a dietitian who can help you with an elimination diet like FODMAPS. Good luck!

[Lynnb22]

Joint pain,brain fog , depression and lots of other things you describe could possibly be symptoms of low vitamin d and thyroid problems. I have not read all of the posts above so I don't know if thyroid has been mentioned at all but it would be worth getting yourself tested if you haven't already.

[Kim1950]

Hi Joshua93,

You sound really fed up. Been there done that. One thing that does occur to me is: Do you like a drink? Being really fed up would motivate me to having a drink to cheer myself up. Only now I drink only cider or wine or the occasional gin and tonic but NEVER beer! Beer contains gluten, lots of it. You can get gluten free beer but I hardly think it is worthwhile.

Just a thought.

[Joshua93 in reply to Kim1950]

Thanks but I don't want anything to slow the process down

[appletina]

I went through the same thing too. After I cut down on salt, sugar, lactose and soy products I felt normal again. Anxiety raised my blood pressure causing the symptoms you spoke of. This was the only thing that helped me aswell as eliminating gluten. Your whole body needs to be reset again. It takes time and effort I'm afraid

[Joshua93 in reply to appletina]

Wow thanks for that reply that has really helped me can I ask how long it took you to be symtom free ?

[appletina in reply to appletina]

yep me exactly

[appletina]

It took years for me because I had no one to give me advice like here. If I had come across a site like this before it would have taken me about two months I believe following all the advice.

[Joshua93 in reply to appletina]

Ok what mistakes did you make that prolonged the healing ?

[appletina in reply to Joshua93]

I thought it was just gluten I was intolerant to that was a big mistake. I didn't compensate for the side effects of the symptoms, so my body didn't have all the nutrients, water, rest it needed to repair itself. I worried a lot that was a big mistake thinking I had a fatal disease. The worry made things worse. I kept eating things that caused me problems that prolongs the healing.

[appletina]

Exercise, cutting down on sugar, and salt really helped me. I cant eat sweets anymore, and salt raises my heart beat.

[fellingletdown]

I would stay away fron gf processed goods and op for naturally gluten free.all fruit and veg,fresh meat with no coatings.drink plenty of water and a good multi vitamin I find I do better on the vitabiotics than anything the doctor gave me!

[Joshua93 in reply to fellingletdown]

Thanks feeling letdown can you tell me what symptoms you suffered from and how long you took to recover ? Thanks a lot for your suggestion

[fellingletdown]

I'm not diagnosed yet I go to the allergy clinic 26 nov. my health has been dropping for least three years.i was told I have arthritis,and I just got weaker by the month,started having stomach acid/acid reflux,got bad fatigue so Dr did blood test my iron was low so they said I might have an ulcer I had to take lansoprazole for the acid and iron for one month then stop,my iron would come back up then drop again when I stopped.then they found my vit d and calcium are low put me on dcal for that after 12 months little had changed.needed pays on my shoulders I couldn't lift my arms up they got so weak! Told I would have to stay on lansoprosole.i decided I didn't want to take it anymore with no explanation.i read up on stomach acid and came across leaky gut.i stopped eating bread and the acid stopped that led me to look at gluten.i get the blisters between my fingers.i went to the dr a told her I'm sure I have a problem with gluten or wheat she looked a the blisters and agreed something was going on and referred me to the allergy clinc,I think having something visible got me referred! I'm going to do a super clean diet as soon as I can.

[appletina]

I found out after going GF that I was sensitive to soya products too, so I remained very unwell. Once I stopped soya and lactose and gluten, my head cleared and the pain went.