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.

Fair enough. Just keep in the back of your mind that the enormous rise in the consumption of water in this country was caused by an article sponsored by the bottled water industry, and be wary.

I'm very aware. Thanks. I'm also aware that people are putting themselves at risk of of hyperhydration. It's alarming that people believe drinking litres and litres of water is good for the system and yet are still thirsty. They don't understand the osmotic potential of the body nor how they are washing away all the nutrients in their food by downing gallons. I drink to thirst and consume a lot of salt because I understand what my body needs. Totally against the current governmental guidelines.

Most people have no concept of anything more than what they are spoon fed. A mummy friend at school has just started selling the latest diet craze. It reduces cravings and stops the body from absorbing carb or something. Haven't looked it up yet. All the women around her were cooing over it and I sat there thinking this isn't for me. What else is it stopping a person from absorbing? This is the sort of thing I believe you're talking about.

This mummy has lost weight for sure. But I've lost 10kg by going on a reduced carb diet. High fat low carb. My health was my concern as much as the weight needing to go to increase my energy. I'm still overweight but not loads and not obese or anything.

Thanks for the info MOLD
It's useful to know what works for some and what doesn't for others.
I honestly didn't know that that peppers were related to the nightshade family. We avoid potatoes at home and just base meals on sweet potato where the recipe calls for it.
If out we eat potatoes sparingly and it's nice to see sweet potatoes .
I tried tomatillos a few weeks ago ( an acquired taste) and don't go much on fresh tomatoes but we live in the real world and if you are ok on them ...then go with it.

I take serrapeptase most days ( when I remember as you need an empty stomach) . I'm not aware of a problem with it. Do you mind if I ask what sort of symptoms you get?

Mr Dowser and I are off to a totally gluten free cafe, so some nice yummy soup and cake. We are in the process of setting up a dowsing group there.
So had better dash...will catch up later

Op hope things are getting better today ;-)

Burning painful stomach and 20 trips or so to the loo.....

Gut is a weakness for me.

How do you use dousing? Can you use this to see if you would benefit from or can assimilate a remedy you find on the internet? From a picture I mean. As long as I'm in balance, I can usually do it by concentrating on it. I can't always tell. When my body needs something or a remedy that I've already taken, I get the taste in my mouth. I didn't know I could do this for quite a while. I was too ill. It's obviously not an exact science. Or even a science. I just noticed one day I could do it. It's a bit odd really.

Hi op

So sorry you're suffering at the moment, I want to give you some hope if I can

I was diagnosed wth ME , fibro and became so ill over a decade I ended up with brittle asthma in a wheelchair and was told that there was nothing more that could be done

That was all down to misdiagnosis for over 20 years, I was what is termed a hidden coeliac and an extremely severe one

When finally found by my private physio who specialises in ME and fibro (and is a qualified nutritionist) I was profoundly deficient in all vitamins and minerals and close to death

With her help I have been able to regain my health, I now walk without a stick, gone is my wheelchair and so long as I pace myself I lead a relatively normal life after 10 years in a wheelchair

The things I've learnt through reading the research are that you need to put back depleted vitamins and minerals ( look at myhill)

Reboot and repair your gut with the best product you can afford, symprove is my gold standard product

By now you should not be having glutening symptoms, if you are then you may be inadvertently still ingesting, look at lip salves, lipsticks, face creams etc

Stay away from all the deadly nightshade family and oats until you are completely sure they're not involved

Even gf oats can make you ill if like me you're one of the 5% who react

Insist on a b12 folate and vitamin screen, if these are not right you won't be able to get your mitochondria working properly again and this can keep you in the viscous boom bust cycle

As others have said, take care it will pass but it's bloody awful whilest you're there

User is talking about Dr Myhill. She's pretty shit hot. She has a website if you google her name.

User sounds like you had a crap time. It does take time to recover. I'm hoping 2017 is my year.

Approach Dr Myhill with extreme caution.

Myhill is not one to be advocated. Fortunately, poor SickTiredDesperate does seem to have medics on her side, supporting her.

Myhill is a hero to some and I am actually medically qualified and capable of knowing enough to make my own choice

£30k of standard private medicine left me dying undiagnosed in a wheelchair

You make your own choices in life and having been well for 5 years following a similar protocol run by a practitioner who works at a bupa hospital near me I am at peace with mine

It's the difference between sticking plaster medicine which is what we get these days and holistic medicine that looks for the cause and treats it

Interesting. What sort of medical qualification?

Emily Thank you for all of that

Yes, my GP is seeing me (or talking on phone if I can't make it to the surgery) every 2 weeks. She is enraged and shocked in equal measure and is very firmly in Team SickTiredDesperate

She overtly referred to fact that she's recording stuff in minute detail precisely as she said she could see I was in no fit state to. Pre 'now' (IE stable to some degree) the surgery was in contact even more frequently, so all is very definitely recorded. As are obviously the specialist visits.

I'm sorry, please please don't take offence but I laughed out loud at the pineapple for if ingested gluten bit, had a mental vision of someone lobbing a bucket of water over a bush fire (& that's ignoring the fact that I couldn't have even eaten a single piece of pineapple as couldn't eat a thing for weeks..) Thank you for cheering me up a bit

User I share Betrand's caution around some alternative practioners but I also very strongly identify with your experience of vast expenditure in 'modern' medicine chasing a DX (which is one of the reasons I did so much awareness work - breakfast telly, House of Parliment etc - for Coeliac UK). My own figures are: took over 5 years until DX, c.£50k of BUPA's money and - and this is where my cautiousness comes in - easily another £30k straight from my own funds to a very (very very VERY) well known and charismatic Doctor who had branched off into alternative care... And for that delivered precisely nothing.

Actually, worse than nothing I once had to collect my pee for 24 hours for him to send it off to be tested and then he told me I had a 'leaky gut' as food particles were found in it. He never once made the (I know now bloody easy and obvious ) obvious next step to that which was to either test me for Coeliac or go back to GP for testing for it....

That was before the neurological damage ramped up, so had he done so, I would not now be left with some irreversible neuro damage (vertigo, migraines etc). This was late 90's so t'interwebs marvels not same as now, as now a simple google of leaky gut would deliver a Coeliac reference in results. In short, I spent what was then the cost of a small flat somewhere for precisely nothing but I was desperate - utterly utterly desperate, which is why I kept seeing him

I do though, in spite of my own experiences, totally respect other people's choices so please, no bun fights or derailing. Thread has helped me hugely (genuinely) so I would hate to lose that. Peace and love people, peace and love

In other news...

I am almost too scared to write this, but I think bone pain may be easing a little. I realised when I had to climb the stairs that I hadn't had to stop and lean on banister for the inevitably worsened pain to abate, and I was genuinely all of a flutter. So am hopeful and excited at that, but being cautious IYKWIM as don't want to set myself up for a psychological fall tomorrow if I'm wrong.

I've also managed 3 of the juices today so in undeniably quantitative terms, that is definitely progress Fatigue still bone crushing, but am hanging on to 'this too shall pass' (thank you lovely PP for that) and onto the villi recovery timeline (& the fact that my wrists are not screaming with pain right now in spite of fact I've typed a lot, and my typing is speeding back up a little bit).

Sending healing hugs back to those of you who are ill but have been kind enough to share your stories of both how to cope and also of hope, thank you

Sorry. Forgot this.

User you are totally right re replenishing vitamins. One of my Consultants has already written to GP to recommend the vitamin infusions (as not available on NHS but adamant I need them and knows if he says it AND GP says it then it is a cost the company will have to bear - this is BTW a mid 60's very traditional Consultant type, so clearly times are changing when it comes to treating the 'whole') and I've already got B12 injections as they were barely trace

I don't doubt pineapple (bromelaine) for you would have little effect. It is recommended on celiac sites as one thing to try if accidentally glutened. Perhaps you've not googled things to try.

I understand the skepticm for alternative practitioners out there. There are so many charlatans. I consulted and stopped seeing a Chinese medical practitioner for example because the depth of knowledge required just wasn't there. This person was a former GP (so would have the medically trained stamp of approval). This former GP wanted to help people in ways, the NHS does not allow and therefore decided to train to be a Chinese medical practitioner. So they were highly trained. But still they couldn't help me because they lack the passion and dedication required to be a truly good enough alternative practitioner to help me. The people I see can't go out there and get some standardised training. Because it doesn't exist. They have to go out and push the boundaries themselves, piece together what training there is and find out what works. I think this is where a lot of the confusion lies and gives fertile ground for the unscrupulous charlatan to take advantage of the chronically ill. I'm extremely careful who I consult and the people I see want to help me. Not encourage me part with swathes of cash. The NHS has done next to nothing for me and the way some have treated me has been appalling. Had I listened to them, and their beliefs, I have no doubt that I'd now be unable to walk and would most likely be confined to bed by now. Thank god I'm a feisty bitch. Using medical training as a benchmark doesn't trump anything in my experience.

Really impressed at how much the thread has moved on since lunch time.
I've only had chance to skim it as we came in and I stuck straight into more decluttering but it's very, very interesting and I want to reread it tomorrow when I'm not so brain weary.
(I'm committed to go through each cupboard and drawer before march 1 st when we must have a rewire :-( For our own safety )

Anyway, good night all . I'm sure we can improve our health and I'm sure every day we start off feeling really positive and then life chucks a spanner in the works.
Onwards and upwards though.

Sounding like definite progress there SickTireddesperate. Good to hear.
You'll get there

Bit of a grim day today, just so so weak I had hoped to write the letter but need to put my corporate brain in gear for that and it's just not happening right now no matter how hard I try. Do have to do it soon though as I'm now in overt overdraft given how much cash tied up with expenses that have simply been unavoidable. One thing that dawned on me last night was that I haven't heard from the bloke I know there since before Christmas when he would pretty regularly e-mail me to ask how I was and to send good wishes etc. He is a really decent guy so I'm strongly suspecting he's been instructed to not communicate with me anymore, in turn that makes me think he may well be glad when I do make contact with Legal Dept. as he was genuinely horrifed at what had happened and acknowledged immediately that their processes had failed (hence why I suspect he's been told to STFU).

Spending way too much time on here which usually good as a distraction and time killer, but there are a few threads which are genuinely bloody depressing so think I should steer clear now for a bit!

Have just managed a soup and now hitting sack again before DC home from school so hoping will feel a little brighter by then...

It's so demoralising when bad days come especially when you've been making progress. Remember that we've all had those days, including people who are now better.

Here's hoping you felt better when dc came home.

Thank you Bellona

Today is a better day, one of the 3 BFFs is here and has just finished changing my bedding.... She has 3 kids, is a DI in the Met and works insane shifts, parents both needig help but has taken day off to come and help me.... sure find out who your friends are when you're sick huh?

I'm about to try and have some more soup then getting into lovely clean bed, she's going to batch cook whilst I sleep

She sounds like a fantastic friend. You sure do find out who your friends are. You couldn't see some of mine for dust!

Every recovery journey has ups and downs. It's all part of the process. Hard to cling on to sometimes but true.

My son was an undiagnosed coeliac for 17 years. It's an awful disease and now he is GF for life I worry a lot about his health at university and being Glutened.

It is a rather mysterious disease. It seems from research in Scandinavia that what we have been told to do re weaning may be wrong. I wish I had introduced bread at four months instead of later on while so much of his nutrition was breast milk (similar advice now being given re peanuts, it seems from news stories last week though peanut allergy is not the same as the autoimmune coeliac response, obviously). I wish I had known that a host of apparently unconnected symptoms were in fact indicative of coeliac. I wish he had not got pneumonia and bronchiolitis at 12 months and had strong ABs. So many regrets.

Dear OP, get well soon. I am shocked to read about your symptoms.

Abraid - my dc have allergies (life threatening) and whilst it's natural to regret things ultimately it's pointless. Yoy did your best with the information you had at the time.

Just wondering how you are SickTired?

True, Bella.

Just checking in to say hello to you, SickTiredDesperate. I hope today is a good day.

Hope you are keeping your head above water SickTired . Keep making those tiny improvements and they'll add up.

Thoughts x