Coeliac & been gluten poisoned, desperately ill for weeks now & literally losing will to live - need hand holding :::::((((

[SickTiredDesperate]

Just that really Am so fucking scrupulous with my diet but was glutened in late October by an incorrectly labelled fish pie thing from one of the major online grocers and health just destroyed. Have been really really strong in dealing with it but straw thats just broken my back of coping is too weak to go to GP this morning (GP has been monitering me every 2 weeks and treating symptoms as is literally NO cure for gluten ingestion if have Coealic, you just have to ride it out).

Waiting for her to now call me instead but struggling with the reality of fact that too weak and bones too painful to even manage 5min drive to surgery. I didn't expect to be 'well' yet as villi (bits in your stomach that absoeb nutrients when eat) take 3 months to grow back after automatic destruction if gluten ingested but never in my wildest nitemares did I expect to be so ill and for so long

I'm also really struggling to cope with the rage at reality of fact that this did not need to happen - someone's sodding incompetence caused labelling failure and in turn that caused this. And this is horrific and has cost me and DC so so much and they are getting really stressed about me being so ill which in turn is making me feel guuilty and impotent yet there is literally NOTHING I can do, have not remotely been 'present' for them and they've had to witness some truly awful things (vomit and blood - vomming and ongoing retching so violent that it tore my esophagus, hence the blood - caked over walls of house until I could get specialist in to clean it; me unable eat; me unable 'do' Christams for them), list is sodding endless.

Probably the single worst thing (although it's just been and remains shit all over, esp re impact on DC) is it was my birthday very early this week, was a big milestone birthday and had a massive party planned on Sat/New Years Eve planned that had to just cancel and know I will never ever get back.

I just need hand holding right now and any long term recovery stories of hope as how I feel right now is what CFS/ME look like iykwim and I'm starting to get v v scared have tumbled into that and won't ever fully recover.

Have only ever been glutened once previously in 14 years since diagosnis and what I gather from specialists is that each time you're glutened it does get worse, so am hanging onto that for hope.

Am just so angry, so tired and weak, so nauseous, in such pain from gluten induced arthralgia that am heading to breaking point as I genuinely don't know how much more or longer I can take this.

Not even sure why posting other than I need an outlet and also how I feel right now is what CFS/ME look like iykwim, and I'm starting to get v v scared have tumbled into that and won't ever fully recover.

My god that sounds absolutely horrendous, you poor thing. Nothing to offer but my sympathy - I've had a bug for 3 weeks and feel like shit but that doesn't even come close to what you're going through. I do hope things improve for you soon.

What pain killers are you on? They can prescribe stronger than co codomol- what about omeprozole to protect the lining of your stomach too?
I am asking as someone with an auto immune disease, bag and two tumours. They need to do more as well medicated you can manage better. I am not convinced stripping your house at huge cost by men in haz Chem suits will do you any favours especially as you know the source (gluten)
Soz.

I haven't read the full thread yet as I'm in a rush out, but I can highly recommend l-glutamine to help with repair. I've noticed a big difference pre & post taking it if I've been accidentally glutened with all my symptoms. It isn't an immediate thing though, but taken longer term can help.

I'll read the rest of the thread once I get home.

Sounds awful.

Wannabe - clean up was to clean up the projectile vomit.

Have been asleep for past few hours but reading now awake. I would guess I'm sleeping for maybe 16-18 hours each day ATM

Sorry not using PPs names but brain incredibly foggy and scrolling up and down does me no favours but wanted to ask what is i-glutamine and where could I get it? I will try anything that will help. Incredibly grateful to poster who wrote so eloquently of creating a structure, I genuinly think that could help and hadn't seen it that way before. If it kills the day dawning ahead of me being one to dread and to simply be endured then I'll take that advice and be incredibly grateful to do so - thank you whoever you were

www.hollandandbarrett.com/shop/product/holland-barrett-l-glutamine-tablets-500mg-60003042

Here's a link to the l glutamine tablets that a PP mentioned.

That's the trouble with food allergies old, people do try and catch you out. Mil will put cows milk in my tea and says 'oh it's only a little bit". She does it by accident because she's chatting but it's still not on to think I won't react.

I think you ought to look at legal action when your better, it's grossly unfair that you have to put your life on hold like this because of them.

I'am so sorry to hear what you are going through. My youngest was diagnosed last year after months of doctors telling me there was nothing wrong. I hate eating out but because I have 2 other DC sometimes we have to, we have all turned glunten free in our house. I can't offer anything helpful but so sorry you going through this xx

I read your post earlier when I was in work and I've been thinking about you a lot today. I'm so sorry this has happened to you and can fully understand your anger and frustration at this company's mistake.

Your body's reaction to gluten must be terrifying for you and has put my comparatively mild symptoms into perspective. I was glutaminated on Christmas Day having lunch at a relative's house - it felt like someone had injected acid into my joints, plus the brain fog, blisters, muscle weakness etc. Still painful but definitely improving and although you are suffering far worse - you will get through this.

By now you must be very depleted in nutrients and vitamins as the villi have been damaged. Would it be appropriate for you to have things like B12 injections to help your energy levels? (I'm just throwing an idea out here - no medical knowledge to back it up!) Worth asking your GP.

Even though each day is really daunting for you, it's taking you another day closer to being fit again and back to you old self. Wishing you all the best OP.

Meant write but forgot (sorry, brain is like trying to walk though treacle right now), the BioHazard guys were not here for any preventative reason like exterminating house or something as yes, we knew full well what had made me ill.

Were here clean up very dried up vomit pools and splatters (sorry) and blood spatters all over walls and floor of hall, and from door of bathroom I was trying to get to but couldn't make it in time and then hit with a wall of sick, and it wasn't a job an ordinary cleaner would do in a million years. And I couldn't do it and was no way could ask a DC to do it and GP was clear that regardless of cause, anyone cleaning up bodily expulsions needed to be both trained and protected. It was utterly fucking mortifying but they too were lovely and kept reassuring me that they had seen much much worse, including other Coeliacs which in a strange way was vaguely reassuring? That I wasn't alone IYKWIM.

Coeliac is more vicious than certainly I ever knew. Whats almost worse is how bad the DX rate is - 1 in a 100 people have CD but only 1 in 8 of those is diagnosed, the others dismissed with incorrect DX's of neuro problems, or IBS, or Chronic Fatigue, or even that its 'all in their head' My DX took 5 years as was silent coeliac and primary symptoms neurological so the symptoms not the cause was treated IYKWIM, and in the 5 years it took to get proper DX some of the Neuro damage was so bad it became irreversible

Look up Dr Hadjivassiliou(sp?) if doubt the above (as in nicest possible way, people expressing 'doubt' here neither helps me nor educates them) but literally, if I could wave a magic wand I would get everyone with an IBS DX a CD blood test and same with anyone who is just 'ill' but for no apparent reason. Was only as villi grew back and I started recovering did I realise that neuro issues were not my only sysmptom - weakness, fatigue, no energy, low level nausea and no appetite also all disappearred some months after went totally GFree but had crept up so insidiously I hadn't even realised how bad they were.

I would urge anyone who is ill and has a DX that they just know isn't right to please please insist on test - is a simple blood marker in first instance so easy and painless. If writing this helps just one person then it will be worthwhile as undiagnosed CD leads to worthless quality of life and also to a pretty certain death from gut &/or bowel cancer or other cancers. Too tired google the details but recall one guy who had a terminal cancer DX succesfully sued his NHS trust for missing his - SO fucking easily detected - his CD which led directly to that terminal illness so he won (if you can call it 'winning') as Trust were liable for his impending death via negligence.

If helps people realise how serious CD is full stop and that there is a reason we check, chek, and check again, then this will be worth posting. Agree with PP who said as so many people now choosing GF as a 'lifestyle' it does without doubt make it even harder to genuinely get through to people risks of CC etc. CC rate is less than 200 part per million - IE your croissant crumb blowing into my coffee. So if you see someone protecting their food, please please don't judge them - they have no choice. Be grateful you do would be my advice

Huge sympathies here. A colleague is coeliac, and was poisoned in a restaurant we went to when away on a training course. Very mild compared to what's happening for you now, but she was very sick for a month afterwards. I wish so much that people would be more empathetic to gluten as a poison, not just an intolerance.

I have an intolerance which is not coeliac disease, but still gives me cramps, bloating and chronic diarrhea and god knows that's quite enough, but at least I don't have to be vigilant in order to avoid a huge autoimmune response!

Ref the friend- this is nothing to do with your friendship. You wouldn't be sueing them personally, not remotely. When you're able to make a phone call to the vendor, please do. If nothing else, you will be protecting other people from being in the same position, which I'm sure they would thank you for.

Sorry, so many x-posts as I can't focus properly so rambling a bit and also cant type very quickly so makes for very slow process and x-posts. Yes to the need for nutrients, one of my specilasists has recommened 5 day course of very hefty vitamin infusions but issue is am just too weak to get there (clinic that does them is in central London) yet. Relaise that is vicious circle and will try do soon. Aslo, none of that stuff - irrespective of whether recommended by leading specialist in field - is available on NHS so will be another £4k for infusions which take all day for 5 days in row plus cost of cars (is no way could stay in hotel as be too frightened too as no guarentees re GF toast etc and cannot risk this happening again whilst still so battered from glutening and isn't available in hospitals at all).

And YY, do have B12 injections to administer myself daily but haven't been able do everyday but today and this thread has re-focused me via need for routine and then B12 injections being part of that so thank you

Have absolutely nothing even remotely helpful to add but just wanted to say that I'm shocked at how seriously ill you can become if you have some gluten inadvertently if you have coeliacs

Thank you for raising awareness of this and I really do hope and pray that you recover as quickly as possible.

I'm in the same camp as Vivienne and I'm going to be more vigilant now.

Oh dear god, you poor thing. I know how it feels to be glutened but I am lucky that I have never had a reaction anywhere near as severe as yours. I understand the feeling of utter helplessness and despair though; absolutely NOTHING relieves the symptoms.

Sending you strength and really really hoping you heal soon

Yes as a pp posted you can get l-glutamine tablets. I've moved to the powder lately, but only to aid me in drinking more water (as I buy a flavoured L-Glutamine version). Most health shops stock it, at least in tablet form.

I was glutened two days ago, I feel your pain :(

Just to say when I felt desperate I phoned the samaritans. It helped a lot.

What you are going through sounds like hell on earth. I had no idea how serious gluten poisoning could be, but I have learnt so much from this thread.

I really hope you feel better soon, and hopefully you can look forward to planning an extra big birthday party when the time is right

It sounds very much that you should be in hospital.

Bellona you are amazing, thank you for taking the time and energy to help me and please know you have helped me

Yes, the supermarket in question does know, I was desperate to ensure no-one else suffered and the Customer Service Director (the bloke I know and who is very decent) gave me the inhouse legal counsels contact details. The only communication I have managed with her though is that wrt to other people, to check/insist that anyoe else who had bought product (was deep frozen so guessing many still in folks freezers which scared me shitless for them) were contacted. And some days later she replied to say contact had been made with them which gifts me some comfort.

A friend who is a partner at one of the big 4 law firms has advised me about an interim contact requesting costs incurred be met as gesture of goodwill pending further action, but I simply havent' been up to either finsishing the letter or trying to pull all the costs (along with recipts and invoices etc) together. What mattered to me most was ensuring others have been notifed, although I still have no clue if they did that at the point I was made ill (21st Oct) or at the point I overtly requested it (late Dec).

TY to whoever pointed out it would be their insurer who covers this as opposed to them as, whilst appreciate this sounds crazy given how horrific this, I do find it hugely mortifying to pursue legal action against someone I know and who is very decent bloke (& he helped lots pre Christmas getting orders etc sorted when I was simply too weak too, and then didn't charge me for that entire Christmas delivery).

I am very shocked at how many others are glutened, it's horrific that this can happen so frequently even though we are so so bloody careful. Hugs to anyone else suffering

So sorry this has happened to you. I hope you soon begin to feel a lot better 🌷🌷🌷

Re taking legal action, do you necessarily have to decide right now if you want to do so or not, or can it wait a couple of weeks? You need to conserve energy right now and it may be worth waiting a bit before making any major decisions.

That sounds shocking.

My ds is coeliac and yes we can be pains in the arse quizzing food but the consequences can be horrific.

I don't think people understand there are different scales to CD, in the same way some people have a slight rash if they're allergic to peanuts, while others have anaphylaxis, just because the extreme reaction isn't universal, doesn't make it impossible.

Many coeliacs can cope with unexpected glutenation without obvious external symptoms, but this doesn't do them any favours, as they will still be damaged internally and can be more tempted to take risks, as they don't feel too bad afterwards.

Might not be a huge comfort right now OP, but people like you, with very extreme, immediate reactions, tend to have better long term health, as there is no grey area around taking a few chances.

Hope you feel better soon.