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.

I see tbh it doesn't usually stop people from ripping apart believers of alternative treatments. And yes, these are very much suggestions not recommendations. Everyone's body is different.

I'll save it for the new thread.

SickTiredDesperate How awful. I'd no idea coeliac disease could be so severe.
I hope you can manage to find some way of healing your gut soon .

Thank you for the hand holds and cheerleading, I am trying to adapt an attitude of relaxing into being ill as logically I get that that must be a better state for the body to be in to heal, but there is part of me that fears if I do that ('relax into being ill') then I may never escape it IYKWIM. Maybe it is time I stop fighting it and raging though as that can't be doing me any favours, I hear that so thank you

I think for me the best route to simple gut healing will be firstly Solgar Probiotics (do I need Prebiotics as well? I'd never heard of them)

Someone mentioned lactose and as already knew that can be cross reactive I haven't had any dairy at all since glutened. Not hard TBH given appetite for anything just not there and in face of ongoing nausea.

The meds I am on for nausea and that helped the vomming to stop are Ondansentron, Metachlopromide, and Cyclezine so there really is nothing more than can be added to that as they are already the main 3 used for Chemo so already reached max 'relief' from those (but yes, still sodding nauseasous 24/7 which horrible in itself and has also prevented any return to normal balanced eating at all).

I am trying hard to focus on the things that have already passed, so the neuropathy has ended (at it's worst you couldn't even see my fingerprints as extremities so badly affected) and also my skin damage seems have passed as now clear of the rashes and hives that onset pretty swiftly after gluten ingestion. Things ending do show me that I must be getting better, but it's very hard to keep sight of that when the nausea, profound fatigue, no energy, and arthralgia bone pain still so brutal.

I guess I just need to keep reminding myself that as a Coeliac who has had gluten exposure the villi take 3 months as a minimu to re-grow and so that simply won't yet have happened . Mentally, if I can hang on to that (incredibly factual) reality, then that might gift me some relief from the fear that comes with still being so very very ill and weak.

And you lot have helped me make a decision about what to do in terms of the company that did this to me, not least as I suspect them having to face action may have a good shot at helping them ensure this doesn't ever happen again. If I prevent this for just one other person, or them doing ti again, or someone gets their Coeliac diagnosed via reading thread then that will at least mean some good has come from what is otherwise an unmitigated shitfest

Fatigue is just insane. I only got out of bed a little while ago and am now headed back there. Thank you all for still being here

I'm sorry I haven't RTFT so please excuse me if I'm going over old ground.
Given what you're experiencing is so severe and so long lasting, could it be the case that you've developed an ulcerative colitis and need steroids to heal? Could you have acquired a gut infection because it's in a chronically inflammatory state and normal flora very disturbed? If it was me I'd want to discuss these possibilities with my GP and potentially be referred for some good imaging. I sincerely hope you make a good recovery soon

'This too shall pass' was my mantra. And it did. If the worst of the neuropathy and skin symptoms has passed then so too will the fatigue, pain and nausea.

I took these naturaldispensary.co.uk/products/Acidophilus_and_Bifidus_90_s-7195-0.html

As for the self talk, you need to be your best friend, not your own worst enemy. no idea if you are habitually your own worst enemy but I know I was!

at 'shitfest'.

Fwiw against what everyone else is saying, I would try to delegate your claim against the manufacturer to someone else or until you're better. The (justifiable) anger and concentration needed will be counter-productive to your recovery.

You need to focus 100% on your recovery and use any precious energy for things that lift your heart and make life bearable (friends, family, the outdoors, whatever you enjoy).

Suing a company would be draining for a well person.

Prebiotics is just a fancy name for food/food stuffs, which feeds the good gut bacteria. Rather like sugar feeds the bad bacteria. The idea is that the more good bacteria you can get in your gut either from ingesting probiotics or by growing them through a clean diet (thus crowding out the bad bacteria), the better your immune system and health will be. It's the principle that food is either a medicine or a poison.

Just remember to go really slowly with the probiotics. Halve the tablet or take a few granules if in caplets. Only build up in slow increments.

You poor thing 😭. Sending and some peppermint tea your way. I think your gp should visit with you feeling so weak. 🚗

I have a SIL who is a herbalist and a son who has Ulcerative Colitis. I'm with Bertrand.

I really feel for you OP and I wish you a speedy recovery. This thread has opened my eyes as to how bad Coeliac disease can be as people I know with it have never been this bad.

My god, I had absolutely no idea before reading this that the reaction to gluten could be so severe in anyone. You poor poor thing.

Companies have public liability and other insurances in place for precisely this. The basic point of insurance is that you're left in the same financial position you would have enjoyed should this never have occurred. You need to note down absolutely everything this has cost - including housekeeping, cleaning, loss of earnings etc.

I'd imagine you'd also be in line for compensation given the unusual levels of emotional and physical distress this has caused. Don't feel remotely bad about claiming - it's worth getting some really good legal advice - if you're making a claim of this nature, the actual value probably won't matter too much to the company. It's the reputational damage that could hurt them.

Just a hand hold here.

I will wait until I'm better to fully pursue them, issue in the interim is cashflow given so much extra going out and none coming in...

PP correct re compensation as well as costs ultimately, but right now sole concerns are recovery and the mounting stress of current costs so I think tomorrow I'm just going to have to bite the bullet and try write a 'without prejudice save to costs' letter to them asking them to meet those costs as TBH it would take an equal amount out of me to try brief a lawyer right now, so I have to hope they recognise that if they refuse then it may count against them in a final case which absolutely I will instruct a lawyer for when well enough to do so (& thank you again to all of those who have made me realise that the fact I have a mate there is not a reason to not seek redress).

In better news, I have managed 2 juices today (frozen ones, zero chance of making them myself, and had already had advice about them so had ordered some last week, albeit at another £xxx[rage] ) and - tada! - a whole mug of soup so this is progress! Gutting (no pun intended) though to know that even when I can manage what I have today that most of it will gift zero nutrients given that can only occur with healthy full villi and clearly mine aren't yet back at that, but I am trying to focus on the positive which is at least I could consume them.

So frickin tired and house such a mess, very depressing to be stuck in it. Lovely housekeeper lady is here for half a day tomorrow so hopefully it will be brightened up a bit then. Back to bed now, thank you all again

I read your thread earlier today and feel so sad and angry for you. I hope you do peruse costs and compensation but right now, you need to focus on your recovery. Have you had any contact with adult social care? You may be entitled to enablement/reablement or whatever it's called in your area. You could have daily Care visits for a short period of time to help you get back on your feet in terms of practical tasks. Let me know if you need any help with this, I'm happy to help you.

Just read this thread in full and OMG . I too, never knew the disease could be like this. I sincerely hope you are feeling better soon.

Please be careful with trying alternative remedies. Everyone is posting in good faith but it would be terrible to set yourself back by taking another mislabeled product or something which has affects your condition, when you yourself have noted your improvements.

Try to build your muscle strength by getting out of bed everyday and get friends and family around to build up your immune system.

So glad you are finding this thread helpful OP. As crashdoll says, you may (I have no expert knowledge in this are) be entitiled to some social care help or something like a Red Cross visit (that may be for older people though, I don't know).

Hi there OP,
We hope you are feeling a bit better soon, in the meantime we are moving your thread to the Allergies and Coeliac boards, just to keep things tidy and to get more coeliac-specific advice and support.

I've just skim read the thread so apologies if this has already been said.

A claim for personal injury (pain and suffering plus expenses) can be brought from 3 years from the date of injury. You have plenty of time to bring a claim. Concentrate on your recovery and don't accept a settlement until you know the long term consequences.

However, in order to claim every last penny you need to make sure that you have proof of the original injury and negligence and all (and I mean all) expenses. Don't worry too much about getting it all in order yet but keep every single receipt and record (this thread will be useful as a reminder) how awful you felt at each stage.

Ps Don't worry about your mate. The insurance company will the ones paying.

Make sure your doctor is recording your pain, suffering and disability at each stage. Full medical records will help you.

That's great progress. You will have absorbed some nutrients and anything is better than nothing. It's just baby steps. Yes, frozen veg juices are mega bucks. I mentioned chicken broth upthread. I did see on the tv that even tinned chicken soup gives benefits for colds (immunity and therefore I imagine gut health) but that will be far less than actual broth. Maybe something to think about when the time is right.

Thank you Helen. I'm so pleased that this thread is not going to disappear.
Glad you've managed to get some food into you op.
I've ordered some bio kult soil based probiotics till I can get round to making some fermented peppers. I call it pepperkraut..but technically that's not the correct term...but dh knows what I mean.
He made sauerkraut but I don't like it.
I also ordered more udo's digestive enzymes and will take them with every meal for the next two weeks.
See how that goes.

Is there anything you can take op that helps the villi to heal a bit quicker.

Dowser

Ooh you're good. I'm not good on a lot of nightshade so peppers not for me and crave sauerkraut. Hope you get on ok with bio Kult.

Digestive enzymes are recommended to heal the gut and for someone who's been glutened.. I've tried various different digestive enzymes. I can't take serrapetase or wobenzyme as well some pancreatic enzymes I tried I a small quantity, which burnt my gut and gave me a bout of diarrhoea. Haven't tried Udos and see it's plant based. Have you tried Nutri Prozyme? I can take this one and I imagine this is because it is relatively low dose of a large variety of enzymes. It has porcine and bovine derivatives. I've just restarted taking Prozyme incidentally.

I've also been told pineapple or supplements derived from pineapple (Bromelaine) are good for accidental gluten consumption.

This is all depressingly expensive.

"This is all depressingly expensive."
Always think very carefully about who is profiting. And who has sponsored the website you're reading.

Bertrand. I profit from better health. My health is my job. The only time my practitioner may get a small commission is if I buy from a certain site and I only get vitamins or minerals from there because I've tried cheaper supplements which I'm unable to absorb. She has made me aware of which ones matter and which ones don't (e.g. Get the cheapest NAC or Zinc Picolinate etc). High quality ingredients cost. I don't understand what you were meaning actually. She doesn't sell these things to me. If she can get supplements in bulk cheaper, she offers them to me at cost. I buy them directly online and search the cheapest price. No one is being sponsored as far as I'm aware. .