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.

This all sounds horrendous and I hope you feel better soon, am pleased that the in house legal team have made contact with everyone else who bought the product, if I have read your post right?

I had suspected ME when I was about 20, it's really hard to explain the bone crushing fatigue to people.

I recovered pretty much fully after a year (that was spent nearly all in bed) and im 28 now. I always wonder if it was something else altogether but I was tested for pretty much everything.

My point is that I did eventually recover. I hope you get better soon

This sounds absolutely horrendous. You poor thing.

I really hope you turn a corner very soon and start to get better. I just wanted to see if I can help re your fears about CFS/ME.

I have had CFS/ME for 8 years, quite badly for the first 6, but am now 95% recovered. In all that time, I have never heard of anybody whose CFS/ME has been triggered by being glutened as a celiac. That's not to say it can't happen, of course, but if there was a trend of celiacs that had become ill with CFS/ME I think I would definitely have heard of it (have read avidly over the years in search of a cure).

My recovery has come about by me putting together my own treatment plan, after a lot of research and trial and error. I am always happy to share it with you, at any point, if you think it might help. However, right now I would definitely echo Bellona that it is crucial to relax in order to heal. If you are anxious, and in fight or flight, it is physically impossible for your body to heal itself.

I totally get why you are stressing about being ill for so long, and what might happen if it drags on much longer (been there, done that), but stressing about it could turn your fears into a self-fulfilling prophecy if you do not allow yourself to relax and heal. Please give priority to relaxing every day. It is really the best thing you can do for yourself in this situation. Mediation and hypnosis apps and downloads are great for this, I find. It is natural, in a situation like this, to feel angry with yourself/your body, but please be kind to yourself. You need to be gently nurtured like a racehorse right now, not whipped to go faster.

Sorry, clumsy analogy at the end there (tired!). I meant you need to be treated kindly and nurtured, not chivvied and whipped to hurry up.

You would not be suing your friend, you would be suing the company that he happens to work for which has caused you not only financial loss but appalling physical and emtional suffering.

Write him out of this equation. It is nothing to do with him.

And anyway, having their arses handed to them will hopefully mean that they are more stringent in their labelling in future which will make his job a hell of a lot easier.

I am not a person who would sue for any tiny thing, but this is exactly what compensation payouts are for. You and your family have suffered needlessly and you deserve to be compensated for that.

Oh my goodness, OP that sounds utterly horrific
I had no idea that you could get so sick from being glutened
I just hope things improve little by little.
{{{gentle hugs}}}

Also what PyongYang said above me

Your friend would not want you to suffer any financial loss in addition to the physical and emotional suffering. If he did - he wouldn't be much of a friend. As a PP said, write him out of the equation.

Your friend who is a lawyer, could they write you an initial letter for cost covering and could they or another friend get the receipts together for you? If you knew that your housekeeping costs were covered and could pay for additional help and the treatment in London you mentioned - it might make things easier on you in the short term.

I've been thinking about you a lot. Your strength and courage is really inspiring. We can all learn a lot from you.

I wish you a speedy recovery.

OP, regarding the infusions you've been recommended, are these at the IHF clinic on Upper Wimpole Street in London?

If so, they will send a nurse to you, and do the infusions at your home

If it isn't IHF that's been recommended to you, it might be worth speaking to them

I'm so sorry you're suffering so much, OP, I hope you feel better soon. Just wanted to say, I would never have dreamed of "testing" someone's allergy by lying about the food I was giving them, but you've given me a new understanding about how important it can be for some people- thank you.
Your friend will be expecting you to sue- that's why he sent you straight to the legal department. It won't reflect on him, but please at least write to them and summarise all your costs and ask them to cover them. And include an amount for distress and inconvenience, which is an understatement for what you've been through. There are standard figures for x impact for y number of days that your solicitor will know, and you are entitled to that. It's not grabby or milking it, it's what the courts have decided is fair. And as others have said, the supermarket has public liability insurance for this. I, as a single self-employed contractor, am covered for £1m. Imagine how that scales up to a national chain with thousands of employees, millions of customers and hundreds of millions in turnover.

Crickey, had forgotten how incredible MNers are when the shit hits the fan, thank you Have slept well so feeling a little stronger and slightly clearer headed right now so hopefully able to engage a bit more, explain a bit more, answer earlier questions.

In response to PP who said should be in hospital now, there would quite literally be zero to be achieved by that now. In the immediate first weeks post 21st Oct my GP was emphatic she wanted me admitted local hospital to ensure hydration and electrolyte replacement, and also so pain relief and antiemetics could be administered by IV and as they would be able to deliver stronger pain relief. I was though just as desperate to not go into hospital as logistics involved huge with DC involved and way beyond scope of what I was capable of, so forced myself to make up 1.5 litre bottle of water each day with diarolyte sachets in them and then would sip tiny amounts every 5minute.

I also felt horrific enough at home, where at least I had peace to sleep and no risk of picking up infections, so was very compliant and once GP saw initial dehydration and electrolytes seemed ok she was then ok with me not going in. The specialists are all leaders in field so none local and the journey in taxi to see Prof Gastroenterologist in central London was just brutal, I collapsed when got there and needed assistance just to get to his rooms. Was utterly horrendous but was then able have Neuro one via phone to avoid repeat.

The other reason I was desperate to avoid hospital is that the only other time I've been glutened was in bloody hospital 2 years ago, so have deep deep fear of that or anywhere where I'm not in control of food or environment.

There are friends who could help but I look and feel so wretched I just can't face seeing anyone, the energy to get dressed or even talk is simply not there but I am beginning to realise that the isolation that has driven is almost as damaging as the physical shit so (thanks to thread and you lovely lot) I'm going to have a re-think about that.

Sorry, flagging now but was so much more wanted to say, to ask, in response to PPs but will have to be later as wrists killing now and energy I felt has vamooshed

Last thing I will say though is that whilst I started thread out of sheer misery yesterday, I am really glad it looks like it has helped raise awareness. In a former life I did a lot of telly work for Coeliac UK to raise awareness and it was incredibly rewarding to know had helped others get correctly DX'd after years of being dismissed, if this does same then I'll happily take that.

Ok . Seriously, you need to take legal action because you have suffered financial loss due to their negligence (it's actually pretty clear cut). The guy may be nice, but it's not his problem and its not him who will be out of pocket, so to him it will just be an email to in-house counsel saying "x is going to sue because of y". [cross off to do list]. They'll probably settle anyway.

I agree. Have you talked to somebody that could give you legal advice? This is awful.

How old are your children, I know you want to protect them but are they old enough to help? Where are the 100+ people you had invited to your birthday party? I am horrified no one seems to be helping you! Friends won't care what you look like, let people help, you will recover more quickly that way xxx

Sorry you are so unwell.
Who has prescribed you daily B12 injections?! That's not correct.

I have 3 BFFs who are the only people I would feel even vaguely okay seeing right now, but they all live in different counties to me and all have their own shit going on (sandwiched with both own DC, work, and parents too, we're all that 40-50 bracket now so scant time but huge demands). I know if I shouted then at least one of them would be here tomorrow but I genuinely cannot face seeing anyone like this, I know that's maybe not the best plan of reovery and I'm working on being able to be a bit more vulnerable but find it incredibly hard. I haven't been able to bathe or shower in what feels like forever, my hair is grubby and scragged up, and the house is a bit of a tip and will be until Monday when the fab housekeeper lady is here again (weirdly, I feel less uncomfortable with her here than I do at friends being here or maybe that's normal, I don't know).

Party was a massive destination party with guests from Uni, old work, etc etc with folks coming from all 4 corners of UK so lots of the friends who are friends but not BFFs IYKWIM? And also just practically, they were all off work over New Year but obviously back in normal swing of things now. I can empathise so so strongly with PP who wrote of jealousy at seeing everyone else out still busy and living full lives on FB, I really struggled with that in run up to Christmas but seem to have made a tentative peace with it now given I do know this must and will end at some point soon (& I was just torturing myself so where's the value in that?)

I don't want to say too much about the DC or their existing needs, other than they are doing what they can and they've been bloody brilliant and patient with something they too are angry and feel very powerless about. I think it's very very hard for them to see me so devoid right now, especially after they saw me rebuild my life after other life issues that so many of use face at some point or other. I'm really proud that even the youngest knows what the 'patriachy' is, and they know that both from my actions and my words (we are a very talky family!) so crumpling in front of them or asking them to do more than seems right given their own needs and what have going on, so mocks etc, just feels wrong to me.

They are doing their best and more than usual, I am doing my best but clearly much less than usual, my Doctors have been incredible and done their best, the ad hoc housekeeper has done her best. Once we're all doing our best there really isn't much more any of us can do is there? It is just ride it out...

I have worked up the courage to let a cousin visit tomorrow but if honest I'm just dreading it I'm tired and I'm cranky and my energy is tiny and I'd rather spend it on the DC or me than on visitors (plus I am shitting myself about bugs every time I see anyone right now, since so bloody many seem to be around atm and my immune system is so badly compromised right now that there is every likliehood I will pick up anything that crosses my path, and need that like hole in head)

Thank you to whoever said I was being strong and inspiring. I don't feel either of those things tbh but it's a lovely thing to read so thank you

This has just made me cry, how fucking AWESOME are MN'ers?

Awwww...wish I knew what to say, to suggest to help you.
Let's just hope that your visit goes a lot better than you first thought and each day you feel stronger.

Hi SickTired just seeing how you are doing?
I'm here to hand hold if it helps to post. Estelle made good points. I too have never heard of anyone getting ME from being glutened.

I totally understand not wanting to see people when unwashed and vulnerable. I found though that once I warned people about how shitty I looked and that I could only cope with a maximum of 20 mins, actually it did me good.

I made them talk about them, not me and it sort of reminded me of who I was, and would be again. Little things like a picture if my friend's new dress (I'm quite superficial) gave my brain something to focus on.

Also visualisations help. I really really imagined I was on a beach, felt the sand between my toes, wind in my hair etc. Again it sort of tricks your brain out of the tedium and desperation of pain and sickness.

You're doing so well just to have got as far as you have. Sounds like it's been hell.

Struggling, anyone up who can hand hold through next couple of hours?

Had very rough night and woke in such intense bone pain that can't even leave house. Just devastated as one DC - who has a broken foot and needs all the practical help can get, let alone the normal emotional stuff when flying off for 6 months - flying back to Europe for Uni this morning and I was just too ill to even go as PAX in car (me driving not even an option as so weak and in such pain, but had hoped desperatly to be able go in car, see off, then driven back home).

DC3 has gone in my place to see them safely off but I feel robbed and angry.

And another £100-£150 or so down for return car with wait time whilst DC3 lugs case for broken footed sibling and gets them safely checked in and then to the Special Assistance desk, and another precious moment just lost.

So they have gone and I am here impotently getting updates on their journey in real time, unable to even go hug goodbye at airport and see off properly, and no more hugs for months and months - my heart feels like it could break right now My pain aside, feel like have let DC down just so hugely, this is such a massive term for them as they can't get back for Easter so not back until July and just utterly let down by me right now.

Am sitting here in tears of pain and of frustration and of anger. I don't want to be a victim or feel sorry for myself but this did not need to ever happen, just so so angry [anger]

Bastard gluten, bastard person who didn't do their job properly, bastard illness.

I'm up, have just RTFT . I know it is so easy to say but I really really think you need to ask for help. You sound squire understandably at the end of your tether. I know nobody can magic things away but maybe just some practical help, getting you a glass of water, tidying a room etc. It is also totally normal to feel more comfotable in front of strangers - I do too at times.

What time is your cousin coming? Also, are their any other friends who it would be just about tolerable for you to see? Real friends won't care what you look like and will expect the house to be a mess.

If you don't want to answer any of this and just want a hand hold then here is a hand hold .

Hello fellow coeliac here. I haven't had as awful a reaction as you to gluten- my hair falls out and I feel ill for a week but that's it (I'm a negative blood test but biopsy confirmed coeliac btw, so not sure the universal blood testing would help everyone) I was nearly glutened today by my own mother. She had cooked roast ham, coated the outside in honey and cheap tesco English mustard. Which has wheat flour in it :( The reason I'm so annoyed is she did exactly the same thing the last time I had ham with her! I'd travelled a 100 miles to come visit for my mum's ham dinner today. This is why I check every label on every jar and ingredient and triple check in restaurants etc. But I do wish other people could take it seriously and there could be one place in the world where I could relax apart from my own home!

When I say today I mean yesterday now! I'm up and you have all my sympathy.