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.

TY so much for hand holding and advice esp regarding the pyschological side of things as whilst being in pain and nausea 24/7 is brutal it's the mental aspect of coping that is the one terrifying me right now. Am plagued by all that has been lost, the horror of all that has happened (see pic of blokes like scene of crime officers cleaning blood etc up, utterly harrowing for me when happened and still is every time walk down hall), and fear of what next, when will I be better?

Am grateful for replies, esp PP with ME ({{{hugs}}}) with ideas of how to cope, and those who know of reality of what happens when glutened and why we ARE so bloody careful questioning just everything. We do it as we have no choice, that's why the lovely gift of a cake from PP was 'checked' so much - it's that or this, and this is suicidal thought enducing let alone the physical horrors borne

In terms of the other stuff, I haven't managed more than one bath every week or so as just too weak - had to get someone to help me out of bath as just could not do it and was weeping with utter humilation. DESP trying avoid repeat so now using medical wipes instead. Same with reading, I can't hold books or kindle for very long as wrists just scream with pain and start to shake so Audible has become my new best friend.

DC aged 15 is currently doing mocks and I am failing them badly, I can't prep any meals or do any car ferrying in or out of school so poor thing isn't remotely getting support needed or that siblings had. Makes me want to weep and I could not feel more useless a parent right now

Oh op it sounds horrific. We've had coeliac step sister over Christmas and I admit I had no idea how hard it was to prevent cc. I hope you get well soon.

Do you have much support around you? Any family? Good friends? You're not failing the kids. It's not like you've done this on purpose. Don't focus on what you're not doing. Use your energy to get well x

Oh you poor thing! I have a family member (cousin in law) who had coeliac and is very sensitive. I'm sorry you're going through this.

Have you tried cutting out lactose for a bit? My CIL is lactose intolerant too, she can usually tolerate a bit but not loads, and finds if she's been glutened her lactose sensitivity also increases so she has to be totally lactose free to give her digestive system time to recover. I just wonder if it's worth a try, it would give you something practical to try?

Thought you already had ME?

I'm wondering if you should give adult social services a call or ask your go to refer you for short term emergency practical help.

Are school aware of the situation?

You are not useless. You are dealing with this so well but with such long periods of hideous debilitating ill health, you're bound to be feeling like there is no end in sight.

I enjoy listening to podcasts when I'm stuck in bed. American life, Richard Herring comedy podcasts - over 100 of these alone. Lots of threads on here too with recommendations.

Have you got any friends that could offer you emotional support?

Part of my therapy about coming to terms with living with a chronic illness was about identifying which doors I can knock on for practical, emotional and social support. Have a think about if there anyone you can call on for the emotional and social elements. Illness that leaves you isolated can have major impact on your mental health.

Sending you strength

Are you absolutely sure there's nothing else going on with your health? I know some people with very severel coeliac disease and it's never as bad as you describe for so long..........

I'm so sorry for what you are going through. You poor thing. You are doing incredibly to be coping.

I have hadME and suffered horrifically for the first 9 months. I'm now well but much of what you describe resonates with me, particularly every day being endurance test and the feelings of letting dc down.

I have to pick dc up now but I will be back with some tips which helped me cope with so much pain, nausea and desperation. And ultimately helped my body to heal.

Firstly though much love and thoughts. It will pass and life will change. Everything does. Well done for tolerating what you have.

Oh OP, I'm so sorry, I remember the fury of probably the first couple of years when i got ill. The months I spent in pj's on the sofa watching telly, utterly bored of telly but unable to do anything else and crying at the weekends when friends were posting stuff on Facebook about walking/climbing/camping/cycling etc, all the things I loved doing. The knowledge that it was my pushing myself so hard for so long that had probably caused me to get ill. The regret every time I did a little bit to much - eg tried to read a book and got a migraine.

Is there any way you can see/skype/have phonecall appt with a CBT therapist or counsellor? It won't make you physically better but an outlet for the anger that isn't a friend or family member may well help you cope. It did for me.

If you need help try to accept it - if you want a bath every few days then plan it, arrange that you'll need help so that it may be less humiliating - not something you're driven to when you're stuck in the bath but a planned part of it? Being clean and fresh feels nice and feeling nice is good.

Embrace audible. I'm an audiobook addict now, just as I was a bookworm before I got ill. I belong to a service for people who have difficulty reading. I don't know how they view (hopefully!!) short term illness but you could ring them and ask - much cheaper than audible as you can loads of books for just an annual fee. I download them to an app on my phone or tablet. This is the website www.listening-books.org.uk

Do everything you can to be as comfortable and relaxed as you can and I hope so much that it passes quickly for you. If it does turn into ME then the liklihood is you'll still make some improvements. I can't work and am on highest rate mobility PIP but I go out catching Pokemon on my mobility scooter (as well as boring things like buying milk and better things like going to a knitting group in the library...). I sleep for 12 hours but I'm up and dressed pretty much every day. I do bits of knitting, I'm about to put a bag of prepared veg in the soup maker with a few spices and bits so I can have a late lunch and my boyfriend can come home to fresh soup tonight. I may not achieve much else today - I'll end up on the sofa with my audio book, or in front if my jigsaw if I'm lucky, but I have a life, I've found ways to be content. It might sound like hell to you compared to your pervious life. I gave up using an ME forum after a while as I couldn't believe people were accepting the limitations in their lives, carrying on as if it didn't matter, being happy, it seemed crazy to me earlier in my illness, but now I see it's the only way long term.

I haven't always been this happy and positive. I cracked up with sudden severe OCD after a couple of years. But I cope now, and whatever happens you will cope too. I have my fingers firmly crossed that you get back to 'normal' as soon as possible though.

Oh you poor thing.
I would seriously consider trying to recoup some of the monetary cost this has caused you, from the food company involved. You will then be able to 'buy' some help. It would relieve the pressure and guilt you feel to your dc. The company should be insured.
This situation is heartbreaking and totally avoidable.

With quite a bit of experience with Coeliac disease, I'd be concerned something else is going on given what you've described. Whilst horrendous a glutening should not have such severe symptoms for so long. Have you been tested for other illnesses/issues or has it just been assumed to be down to coeliacs?

I really do feel for you and offer you my sympathies though, it sounds like you have had a horrible tough few months, don't make yourself feel guilty about your family, you can't help being poorly.

OP i have no real life experience with coeliac disease so I am sorry that I can't offer more than . I have some friends with various intelorences (including soya which is incredibly difficult to avoid) and I am always terrified of 'poisoning' them.

I do feel that gluten is the 'intolerence du jour' at the moment and this has a massive negative impact on people such as yourself who don't just 'feel a bit iffy' after ingesting gluten but are seriously effected in the long term. As with the Jamie Oliver story when someone says they can't have gluten one minute but are chowing down on a doughnut the next people don't realise the seriousness and the implications for a true coeliac. (to clarify i mean it is likely the wait staff did not realise the impact serving wheat pasta would have for this lady and they may have done it many times before with no negative results).

I'm so sorry Nothing constructive to say but just wanted to let you know there's another person out there wishing you well

Does this differ for everyone? My sister has been coaliac for 17 years, if she gets glutened, she vomits and has diarrhea and feels very rough for 3 or 4 days and iffy for a week. But nothing like this! I'm not doubting your experience of being so I'll, but are they certain it is just the gluten? Poor you, I hope my sister doesn't get so ill. Last time was when a friend cooked her an Asian meal with wheat noodles, but claimed they were rice noodles, as a kind of test "I thought it was just a fad". Wanker.

No, there is nothing else wrong, all been tested (so adrenals, iron bloods etc all tested in immediate aftermath and were fine and even MRI fine), is literally just immune response to gluten. I do think people don't get it unless they've been up close and personal with it, witness PP telling of MiL who lost layer of skin which I can totally believe but others saying 'well, it can't just be the gluten'.

It is precisely the gluten, if you suffer from coeliac any gluten ingestion is a massive attack on every system in body as it's an autoimmune disorder so every aspect of body just reacts, initially with very violent evacuation of projectile nature then followed swiftly by everything from neuropathy to arthralgia to then malunutrition as impossible to eat at all in first couple weks, but then when can eat even that isn't absorbed as villi destroyed and nutrition intake dependent on those.

GP did call and has re-issued pain and nausea meds and scheduled another call in 2 weeks, also need to have endoscopy and colonoscopy to scope out the damage but genuinely cannot face those yet, too weak and too scared of gag triggering which would be terrifying given had weeks of automatic gagging and retching after the first 48-72hrs of projectile awfulness. Was so brutal often couldnt make the bathroom which is why bio blokes scrapping debris off from head height as thats how body expels it given so toxic for a coealiac - Gastro told me that it's only coeliacs who projectile vom, that normally only children projectile vomit but not adults other than when body is suffering a catastrophic reacion and desperate to expel the toxin, in this case gluten. No clue if he's right that it's only Coeliacs but do know that even when I had norovirus I wasn't vomiting horizontally and hitting walls 5 foot away, he said it's a measure of how vital it is to get gluten out of system and that the body just does what it needs to do I cried like a baby, it was utterly terrifying, like a scene from the bloody Exorcist (& the bio clean up was just under £700:(

I am really grateful to those that have posted, thank you, Im reading all and grateful (and I'm trying download that app now )

Well, I have never come across any coeliac who was ill for so long after having gluten- and for various reasons I have known a lot of coeliacs over a lot of years.
I would be pushing really hard for more investigations if I were you.

My youngest DD is Coeliac (also dairy and soya intolerant) and you have my sympathies. People really don't understand how awful eating gluten can be for a coeliac. Also coeliacs can react to gluten in different ways, there is not set pattern to the disease so while many coeliacs will suffer stomach pains and diarrhoea for a few days after gluten others may get migraines without having the upset stomach and others may get joint pain and many children are affected with behavioural issues. Just because one person reacts in one way doesn't mean all coeliac will do the same.

old that is just appalling, am that someone could be that fucking stupid, your poor sister

It's hard to know how many people react as I do or those that get off more 'lightly' but there is a theory that some coeliacs are more sensitve than others. So I know some people eat oats for example but I absolutely can't and I'm guessing same is true for the Jamie Oliver woman and for PP's MiL who lost a layer of skin. Pre having Coeliac I'd have read that and thought it impossible, but now I have no doubts. Its a horrific thing to have and people not understanding does make it harder, some people were like a bit when they were contacted to cancel birthday party invite but I just need to recognice that's their shit not mine but when you're as sick as a dog it's less than ideal...

I will have to recoup direct costs when able but truly just don't have the energy right now, just grateful have enough head room on credit card to cover all or else I would be utterly screwed right now but no, I don't intend bearing those costs myself or that would just add insult to injury IYKWIM.

Bertrand thank you as I'm sure you mean well, but gastroenteroligist, neuorologist, immunoligist and GP are all being clear there is nothing else. My blood Igs are through the roof as are inflammatory markers, both in line with the immune response, so those and the Doctor's collective experience I just have to trust.

But yes, I am terrified is morphing into something else and that panic or fear is one of reasons posted. Am deeply grateful to those who have shared similarly brutal reactions as gives me hope this will start to lift and hope is what I was short on earlier today. It's fucking awful.

When you are feeling up to it, check out your household insurance policy, many cover legal problems. No idea whether this would fall within their scoe but worth asking. Mr Customer Service can be as nice as he likes, he's not the one who is sick.

OP and her many doctors know that it is coeliac that has caused this, with their many years of experience and qualifications so a bunch of people saying 'it can't be just that' is frustrating and unhelpful. My dd is anaphylactic to certain foods and people telling me that a life threatening reaction 'can't just be from x' is pretty annoying tbh.

The best thing I can recommend from having had a severe chronic illness (ME in my case) is to try to get your body into a healing state by deep relaxation and meditation. To really heal, apparently your mind needs to be calm and relaxed as well as your body. When I was bedridden my mind would race at a million miles per hour about how awful I felt and how I was letting my dc and dh down and I found podcasts of meditation very helpful in soothing me and bringing about a calmer and more pleasant relaxed state.

Are you able to eat any more than toast and ginger beer now? I wonder whether very specific nutritional advice might help to get some nutrients into you, and also protein which are also vital for healing.

How is your sleep? Again getting a very good night of deep, restorative sleep is a significant part of healing your body.

Do not push yourself to do more as this will set you back. Try very hard to accept where you are now, focus on nurturing yourself to heal in order to do more, not pushing. This bit is very difficult as its not how most of us work - particularly as a single parent - but its essential.

Recovery will probably happen in baby steps, tiny little differences like being able to brush your own teeth one day or hair or make it downstairs. This is fine. Building a solid foundation on which to build a slow and gradual recovery is much more sustainable than a 'miracle'.

Ups and downs are also part of recovery. Bloody heartbreaking when you hit a dip but try to assure yourself its all part of the recovery and rest and it will pass. Just because you can't get to the GP now doesn't mean you won't be able to next time.

I had some counselling from my bed (on the phone) and it was very helpful in adapting to 'crisis living' as it was termed (and thats how it felt). It taught me a lot about managing my thoughts and making life as bearable as possible.

Crucially rest, rest and rest some more, doing meditation, snoozing and watching telly if you can manage that. Audible is indeed a fantastic friend!

Remember it will pass. Sorry if some of this sounds a bit woo. I certainly thought that - but was desperate enough to try - and I am now fully recovered (from ME - different from you but hoping some of the general principles are applicable to you)

Many sympathies. Its absolutely hideous being seriously ill. I think you are coping amazingly well.

PS - My post doesn't imply that I think you have ME. Your symptoms are different from what my experience of ME was.

So sorry this happened to you and was caused by someone.
I hope your Dr can help with the trauma it's caused you once you feel stronger.

Does the company which poisoned you (and the Customer Service Director) know how ill you are?

Is there any way you could fund (with the intention of recouping costs) some additional help with care? The house keeper sounds great but could you have someone come to help you wash? private counselling?

What you are going through sounds truly awful and anything which can be done to help you get through it should be considered.