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

(197 Posts)

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SickTiredDesperate Fri 06-Jan-17 12:21:48

Just that reallysad 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 longangry

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 muchsadangry 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.

SickTiredDesperate Fri 06-Jan-17 12:24:03

Am v L/T MN'er, NC'd as cancelling >100 folks for my big birthday do due to gluten poisoning is pretty specific and don't want my other posts outed IYKWIM flowers

bibbitybobbityyhat Fri 06-Jan-17 12:24:51

Surely your GP should come to you?

Who is looking after you at home?

ChipInTheSugar Fri 06-Jan-17 12:29:49

Bloody hell - I for one had NO idea of the effect it could/would have! It sounds absolutely shit for you. Are you being looked after? Are there any local charities who could help out until you're feeling better? flowers

PinkSwimGoggles Fri 06-Jan-17 12:31:40

are you looking into suing the asses off the company responsible?

poor you, I hope you feel better soon!

ButEmilylovedhim Fri 06-Jan-17 12:52:55

Hi OP. So so sorry to hear this. <offering a hand to hold> How dreadful for you.

I have no experience of Coealic but I have an intolerance to MSG which gave me shocking migraines that lasted a week each and caused numbness, blindness etc. I had them for years and years and lost my job and missed so many, many things. I haven't ever got back into a career. I was regularly poisoned by food as I had no clue what they were caused by and there was no pattern as so constant.

So I kind of understand. But at least mine didn't last months without a break. Do painkillers help with the pain? I guess maybe you can't take them at the moment. Would suppositories be a possibility? Sorry if that's a stupid idea. Painkillers never really helped with my "migraines" as often there wasn't a headache, it was the other symptoms. People never really understood either, I was suspected of making the whole thing up. Why would you make that up? Are you finding people sympathetic? Have you got much support, especially with the dc?

Please, please have your party when you are better. The moment hasn't gone, just postponed smile And there will be other Christmases which will be fabulous and you'll have a lovely time with the dc and all this will be in the past. Easy for me to say I know, but hang on to it and it will be so eventually. You can't know if this will turn in to CFS/ ME so try not to borrow trouble so to speak. You've got enough at the moment to deal with.

Could the doctor do a home visit as a one off? I can imagine how much it will take out of you to get up and dressed and out. Or could you have a phone consultation? But maybe you need to be examined.

Sending a very gentle virtual hug to you and flowers I hope, with all my heart, that you will recover very soon.

ChocolateStarBiscuits Fri 06-Jan-17 12:56:26

Wow, I'm speechless. I didn't know that this could happen either. Poor you and your children. It sounds like you've had an awful time of it. Sorry that you've also had to cancel your party.

I have no experience, but sending you lots of positive thoughts and hopefully someone who knows more may be along to give you some hope.

HopperBusTicket Fri 06-Jan-17 12:56:42

I'm so sorry. No experience but that sounds horrific. If you ate gluten in late October and it takes 3 months for villi to grow back does that mean that in a couple of weeks you can expect to start feeling better? I hope things improve for you soon.

sparechange Fri 06-Jan-17 12:59:04

I have nothing useful to say, other than I really hope you recover soon.
Is the retailer aware of how badly you've been affected by their cock-up?

Hopefully you'll be able to have a double celebration birthday party and well again party soon paid for by an enormous amount of compensation from the idiot company who did this to you

SickTiredDesperate Fri 06-Jan-17 12:59:41

No-one is looking after me in sense of I am the only adult at home (am single parent) but have had to get emergency housekeeper type person - who has been fab - in a few times a week since been ill and she did everything from wrapping pressies to doing dishes etc.

In terms of medical 'looking after', am under care of gastroenteroligist(sp?), neurologist(sp?) as had vicious vicious migraines and cpl other specialists but, other than treat symptoms, there is literally nothing they can do. There is no cure, no antidote, nothing - you just have to ride it out (replete with the knowledge that every time you ingest gluten your chances of developing gut or bowel cancer increase and again is nothing they or anyone can do about it).

Whats killing me is have not 'just' lost XY weeks of my life, but that each of those days was/is a test of endurance as pain and disability just immense. I just want to be well, I genuinely don't know how much more I can take.

And YY to PP, this is as bad as it can get but suspect most people don't know that if not directly affected. Too tired to find/paste link (could someone else please?flowers ) but google the woman who was glutend by Jamies Italian Chain - she was so ill she had to be taken off the heart & lung transplant registersad

HeyMacWey Fri 06-Jan-17 13:01:26

It sounds like a horrible thing to happen, it's right to feel angry about it, but I'm wondering if this is using up some of your vital energy - you need this energy for recovery. Do you have access to a counselling line or something similar to talk through these feelings?

I don't really know what to suggest, but perhaps speak to your gp about some anti-depressants to get you through this period.
(I have cfs/me so know how limiting fatigue can be and how your mental health is so linked to your physical health).

And rest as much as possible.

Can you call on favours to get you through this period? Don't be too proud to ask for health.

What pain relief has the gp given you? I have fibromyalgia too so know that bone crushing feeling.

flowers

Thattimeofyearagain Fri 06-Jan-17 13:05:31

You have my deepest sympathy, my poor smil was horrendously ill and ended up loosing a layer of skin last time she was glutened and recovery was a long road. Have you complained about the incorrectly labeled food ? flowers

SickTiredDesperate Fri 06-Jan-17 13:05:43

Sorry, x post as taking me so long to even type. Yes they are aware but I'm in no fit state to even instruct a lawyer and also feels more complicated as I know the Customer Services Director and he is a really nice bloke so I feel bad at idea of suing them. My direct costs are immense though, the housekeeper, taxis, the bio specialist cleaners etc have cost me over £3k so far and still counting.

TY whoever it was for phrase 'don't borrow trouble' - thats a new way of seeing itflowers

SickTiredDesperate Fri 06-Jan-17 13:08:29

Meds/pain relief - am on chemo strentgh anitemtics for nausea and max poss dose of high codeine strentgh co-odamol for pain but still in savage pain and still brutally nauseaous. Have literally lived on full fat ginger beer and plain toast once could eat again (could not eat for weeks as each time triggered retching and more blood as kept re-tearing esophagus but able keep toast down now).

girlelephant Fri 06-Jan-17 13:15:18

Just wanted to send flowersflowersflowers as what you are going through sounds horrendous. As you said this is avoidable with care! I have someone close to me with the same thing and when we cook for them we are so careful of not cross-contaminating food in any way.

Only you can decide if suing them is the right thing once your health is better but shocked at the cost so far.

In regard to Christmas/your birthday please celebrate once you are better!

TheABC Fri 06-Jan-17 13:28:14

Just a handhold here. As other pp have said, your villi will grow back soon which will hopefully lead to recovery. I am guessing a lot of your symptoms are coming from that destruction as you will struggle to process food without a stomach lining.

(Mentally) plan something nice for yourself and the DCs when you are better, so you have something to look forward to. Understandably, you are going to dwell on your illness, but anything you can do to feel more positive will help speed up your recovery. Watching TED talks? A soak in the bath? Sniffing your favourite perfume?

It might be worth talking to your GP about your ME fears. Either they will reassure you or perform a diagnosis.

Good luck.

SargeantAngua Fri 06-Jan-17 13:28:29

That sounds horrible, I really hope things hey better for you soon. I have ME, been ill for 4 years and I wonder if some of the things which help me might help you too.

That biggest and hardest one, which I struggled with for a long time, is anger and frustration. totally understandable but if you can try to relax, try to find some distraction etc it really will make life easier. Save fighting the company who got you in this state for when you feel up to it? Or delegate it to someone else to fight for you?

Is there anything you can enjoy doing? Listen to music, audiobooks, do a jigsaw, build a lego model, learn origami, draw a picture, so an adult colouring book... I know all of these take energy, if you can't sit up for long you can only do little bits, but doing something, and not something that has to be done, just something you can enjoy, makes life a bit more bearable.

Do you have a routine? How do you pace yourself through the day? If there are tasks that need doing can you split them up or make them easier? It might seem like giving in to eg get a shower stool or things like that, bit if you make like easier you might feel a fraction better. If showering every day is too much, step back and decide to shower every other day. Things like that might make it a bit easier to get through this. A bit if routine makes the days feel less endless too.

I'm not sure if any of that will be of any use to you but I hope it might. flowers

Branleuse Fri 06-Jan-17 13:30:58

oh god, you poor thing. He might be a nice guy but youre the one paying the price when it should be him

1horatio Fri 06-Jan-17 13:31:44

That's awful!!!!
Is there at least someone you can sue?!

I do have a friend that's a celiac and I once baked her a cake. She was like... did you bake anything else when baking it? -no. Was there flour in your kitchen? -no. Some flower left on the cake pan? No. are you sure? Yes.

I knew that the results can be bad, but I didn't know they were this bad!!

At least there's a bit more variety with all the people eating gluten-free?

CheckpointCharlie2 Fri 06-Jan-17 13:33:22

Here is my hand to hold. What a hideous situation, sending you some super healing vibes >>>>>>>>>

SenseiWoo Fri 06-Jan-17 13:36:34

I am so sorry to read this.
Look, if the Customer Services Director is a nice guy, then send him a polite letter telling him how bad it has been and asking the company to meet your out-of-pocket costs-not just what you have spent so far, but what you are likely to have to spend until you are well.

It is a lot of money for you, but peanuts to a big company. Plus to them, ensuring goodwill and no bad publicity are important. The worst that can happen is that they say no (in which case, when you are well enough to go to a lawyer, that lawyer can take full tactical advantage of the refusal).

purpleladybird Fri 06-Jan-17 13:37:10

OP I don't have any practical advice I'm afraid but just wanted to say that it is likely the company involved will have insurance to cover themselves in these situations and so they wouldn't directly suffer as a result of you receiving compensation. You shouldn't have to make a financial as well as personal sacrifice. Keep receipts for everything and copies of medical records, appointments etc. Although I agree that this is best left until you are better, which I hope is very soon.

puddingisgood Fri 06-Jan-17 13:38:12

Oh SickTiredDesperate that sounds horrific! flowers
I'm a coeliac (and a single parent!), and whenever I have been glutened I am ill and feeling literally poisoned for a maximum of two days, then just feel ropey for a few days more, so I can't imagine having this ongoing for weeks or months! It must be really difficult for you. I hope you find some answers soon, and that this is not the beginning of something more. It sounds like your G.P is trying to be supportive, which is something at least.

Msqueen33 Fri 06-Jan-17 13:46:22

My two DC have coeliac. Youngest is nearly four now and was so sick with it. Gp wouldn't listen that there was a problem. Elder sibling was a silent coeliac but it's awful. We don't eat out because we are so worried about cc and I'm scared they'll eat something wrong. It also makes me nervous of them eating at other peoples houses. Youngest was cc at nursery numerous times and came home with horrific blisters on her bottom yet they said she'd not gotten anything. I wash my hands religiously if I even open a cereal packet for my non coeliac child (she mostly eats gf but has autism so feel it's unfair for her to completely miss out). But I freak about crumbs. We don't have ordinary bread in our house anymore and it's literally all gf.

Big hugs as I know (after a lot of reading) how bad coeliac is and how it can cause more autoimmune conditions. People think it's just avoiding gluten but it's not that simple.

Get your Gp to make a house call. You need to be seen.

LadyMonicaBaddingham Fri 06-Jan-17 13:47:02

Poor you, OP flowers and a very gentle un-Mumsnetty hug. Here is the clicky link for the Jamie's Italian story.

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