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.

Gosh how awful for you. I had no idea how serious this could be so if nothing else thank you for raising awareness. Big handhold for you and

I had severe ME but luckily recovered after 4 years so if you have any questions or need a rant then please PM me

When I was diagnosed it was after a 19 day stay in hospital I was so ill mind, I have only had 2 or 3 exposures to trace amounts of gluten since then! My in laws are the worst- they read the daily mail so think it's a fad and keep dishing up food with gluten in it, or contaminating non gluten things with poor hygenie. I don't even risk a cup of tea at their house these days.

I have had full blown ME for almost 6 years now with warning signs and a loss of evergy for 4 years before that.

The guilt and anger at the being incapacitated in the beginning of being so ill is intense. I'm echoing what others say, which is to submit to this and let yourself heal. With the goal of getting your health back. And if your dc need one of your friends to come over and help, then this is what needs to happen. Dd and I wouldn't have survived without help. She was only 3 at the time. I totally understand the not being able to bathe. Or move.

I saw upthread that someone recommended L-glutamine. Please be very careful with this. It is true that it's used to great effectiveness to help heal the gut. However, it is also a known allergen. For some, it metabolises into monosodium glutamate (MSG). I cannot take it for this reason. If you think you could stomach it, perhaps try bone broth first, which is gut healing. You can make it yourself - I know you have no energy - or you can buy it online. It also contains glutamate but not such concentrated quantities and is very nutritious. Unfortunately I can't take that either.

Hopefully this isn't ME for you. And the more you love yourself, meditate, slow down, the faster you will heal. Pacing yourself is key. I've been slowly improving and had a nasty relapse last year. I went straight back to basics. It took me about 6 months to get back to equilibrium, just in time for the cold weather to come, which always makes me spiral down. But this year, I've survived Christmas and new year a lot better. I'm still exhausted.

With regard to the food, I was the same as you with eating, only being able to digest carb when I relapsed last year due to a trashed gut due to antibiotics and proton pump inhibitors. So I just ate carbs for a few months. I very very slowly reintroduced vegetables, just a teaspoon at a time. Once I could eat vegetables, I slowly introduced healing foods such as organic coconut oil and raw sauerkraut. Now I can eat most things again including raw onion ad grapefruit. But it took a long time to be ready. You will know when the time is right and it may take a very long time, as your gut is far more inflamed than mine was.

It is normal that you have no energy as your gut flora has been wiped out. Poor gut bacteria = zero energy. You are going to have to very very slowly heal your gut. If your stomach can handle it, I would be taking probiotics. I had a good look around and read up and the best ready made ones I found is Biokult. I take loads more than advised. Again, just start with one to see results or perhaps even open up an individual caplet and take a few granules. Softly softly approach.

I see a highly trained toxicologist, who makes specific remedies. She has helped me loads and has helped me the most with my recovery. I also have massages and Bowen therapy for chronic pain. You may want to look into the latter to help slow your system down as it seems to be in overdrive.

I really think reaching out and asking for help is the best thing you can do right now. Warn people that you feel dreadful and if they're coming you'd love a little help. Then direct them to a task like cleaning the kitchen or hoovering. This way you can preserve precious energy for tasks like showering, which will probably help you feel better. If your best friends are far away consider what you'd want them to do in this situation. I'd be really sad to learn you were suffering and hadn't asked me for help.

In relation to your dc's please don't feel guilty. They know you love them, and that you're doing what you can. Families pull together and I believe strongly you shouldn't hide any weakness from children (specially at the age where they're able to go to uni). It must hurt you like hell to not get that extra goodbye and hug but it's just one, and it sounds like you've given millions.

I really hope you start to feel better soon and this is the last push for you

Very helpful post mummy little dragon.
What sort of remedies does your toxicologist provide.
I like the sound of her.

Do you know what the difference is between a lacto probiotic and a soil based one.
Do you need to take some of each?
Mine are just lacto ones.

OP, lots of us here to hand hold.

When you feel better you can go and visit your DC in Eurooe so do not stress about it.

You need to ask for help. I do t know where you live but if you were my friend I would want to help you. One of my colleagues was ill last year and me and he colleagues did everything we could as she didn't have family to help. People will want to help but you need to ask. If you are near to me I would want to help.

Can the housekeeper help more. I know it is cost but at this stage you need all the help you can get. Is there a C charity that can help? I bet they would do the legal work for you or get your medication etc.

Hugs. Please ask for help. You have posted on here and that is the first step, ask your cousin for help please OP. X

I started off forcing myself into clothes every time anyone was coming round. After a few months even the tesco delivery drivers had seen me in my pj's... I was living in pj bottoms and tshirts/fleece over the top and the energy required to change that just wasn't worth it especially added to the energy seeing people used up. There is a balance - I always had hair brushed and teeth cleaned and was 'decent' - but seeing people is really important and friends will understand that you're ill.

And to the other posters who have/have had ME. I'd be very interested in what you have tried that has helped you recovery. Maybe we should have our own thread though? (Don't mind if someone else likes the idea and starts it - I'm v low on spoons so far today)

Dowser

Yes there is a difference. The pills we can buy otc only have limited varieties of probiotics. To get a really broad range of probiotics, we need the full spectrum. So soil based fementation such as raw sauerkraut (which is also a prebiotic) and kombucha produce different strains to milk based ones such kefir. You also get good yeasts from eating these foods. We need a good range of prebiotics too to feed the gut bacteria. And it's surprising what is prebiotic. Raw carrots are for example.

For gut health the toxicologist has recommended what is basically hydrochloric acid (Betaine HCL), 100% pure cranberry juice, Apple cider vinegar, manuka honey (not the fake stuff), saccharomyces boulardii, Bimuno. She also has recommended a vast variety of supplements, not taken all at the same time. I may miss some out but apart from the aforementioned, I am/have taken -
Nutri Adrenal Extra (Nutri is the brand)
Nutri Thyroid
Nascent Iodine
D Ribose
NAC
Bulletproof glutathione force if NAC isn't having the desired effect (taken alongside NAC but not necessarily at the same time as this is expensive)
Turmeric/curcumin
Various minerals - incl MSM, magnesium, zinc - was taking trace minerals from higher nature for a while
Various vitamins incl b12, b6(p5p) form - from quality ingredients, such as epigenetics or Nutri

And her remedies, which are prepared from natural ingredients. These are for either detox purposes or to support the body. So say if I was taking something related to cleansing the liver, I'd also take something to bind and excrete toxins (chlorella based). She has stage 1 2 and 3 protocols.

Sargeant

I've detailed what I do. The only thing I missed out is CBD (cannabidiol) oil. This completely trashed my gut in the beginning - healing crisis - and therefore made me really ill. I bought a nebuliser and nebulised it for a while until I built up enough tolerance as the one I'm taking doesn't need to be metabolised. It is supposed to help heal the gut. It was on the news last week that CBD has been redesignated as a medicinal supplement. So I'm hoping the one I get will plummet in price as I get it from a doctor who practices in Winchester and Harley St. So ££££.

I'm so sorry that you missed getting to the airport. I have been there, missing important things for the kids (nativities, their birthday parties in my case, mine were very small) and it is awful. Nothing can really make it feel any better.

But tomorrow is a new day, your dc knows you love them and that you would have been there if you could. Be kind to yourself and forgive yourself knowing that you'll be well enough soon.

You're very much in my thoughts.

Thank you all, and please do carry on the conversation about gut health and reclaiming it on here as that is the one thing that each of the specialists, irrespective of discipline, have been really clear is needed but unfortunately not with matching advice from each as to how to achieve that. So I know I need to focus on that but am incredibly confused about how to go about it given conflicting advice ranging from Solgar Propbiotics through to Malfour(sp?) through to FMT (google it, is literally poop!) though to veggie juices through to Lanzoprozole...

So, please don't think it's off topic and you need to take elsewhere as it too is something that will help me and I'd be grateful for

I did manage to get out of PJs and see cuz but was knackering, they were fab with stuff like bins as well as bit of conversation that wasn't just about 'ill'. I do feel about the size of illness though and almost defined by it right now if that makes any sense? Hard to explain and I'm incredibly tired too right now.

Thank you for handholds and for virtually being there, it does make a difference

I also slept for 6 hours after cousin left and woke up to beautiful text from DC who is safely landed and back in 'home' over there, they sound very chilled and text was packed with love so I think I'm the only person who hates me for not being there IYKWIM. I'm very lucky, they are incredible kids and all very supportive of each other thank goodness.

Back to bed now, see you on the other side x

Well done for seeing your cousin. It's to be expected to feel defined by your illness. I found feeling free of it, if only for a 20 minute pretense very freeing.

So glad dc is safe and sound. Of course they understand and forgive you as you would if the situation was reversed.

You need to be at peace with where you are now healthwise knowing things will get better. So so easily said yet so hard to do but very helpful for healing

Thoughts and a hand to hold.

Ok so breaking down the advice you've been given.

• Solgar probiotics - solgar is a relatively good quality brand of supplements. Priobiotics is important to gut health. Personally I use biokult as it has more strains and I read up on this one as having had good results. Haven't tried solgar. Read what I said about pro and prebiotics
• Malfour - ????? Sounds like a character from Harry Potter.
• FMT - the ultimate probiotic. Not without its risks. Takes a massive eating protocol after for it to sustain. You have to insert 5x/week for 2 weeks. You have to take several days of stuff to make you poo like crazy beforehand or have have 3/4 colonics the 3/4 days before you have the transplant to get a clean colon. Costs £4kish for the transplant, which doesn't include colonics. Ever had a colonic? They're hard going. In your state of health, not sure you'd handle it. Yet at least. Would be too tough for me right now and I'm trying to improve my gut flora instead but it's on the back burner. Risky because we don't know the outcome, e.g. men's gut flora is vastly different to women's. Could be your absolute dream solution. But may not. Donors are properly screened. However, once done, how do you undo it? You can't. Well I suppose you sort of can by eating junk food. I await more analysis on this first.
• Lansoprazole - if you were offered this treatment as a way to heal your gut, the person, who advised this should be shot imo. This is a proton pump inhibitor. You're very depleted and I would have thought a candidate for contracting C. difficile or similar on this one. Although I'm a mere lay person. Perhaps required for short term handling of the situation. But to be used with extreme caution as I'm sure you know.
• veggie juices. As in juiced by you and consumed within less than half an hour of juicing. Perhaps with a raw egg in there as well (organic preferably, lion mark very least, very fresh to minimise salmonella risk). Good idea if your body can handle the juice. You're getting the dense nutrients without the fibre that your body can't take. You will only be absorbing a small amount because of the state of your gut.

The reason why you were offered such a lot of alternatives is you because in my experience you need a multipronged assault to heal. Different things will work at different stages and there are many ways to get to the same result and each one is a piece of the jigsaw.

I hope you feel better soon OP. It sounds horrific.

How can the supermarket be sure they've contacted everyone who bought it?

((((((((((((Mega Big Squishy Hugs))))))))))))

I think this thread should be moved to health so it doesn't disappear . What do you think?

Thank you for starting it op and raising awareness of this condition.

I buggered my gut with too many antibiotics for bladder infections, pain killers, Zantac and rennie kind of antacids.

4 years ago, might even be 5 I gave them all up. I had a big tooth out in September and didn't want any pain killers afterwards but in order to scrape myself off the ceiling with the pain I took over s period of two weeks about 14 out of a 20 packet., so I wasn't too disappointed with myself.

Anyway, it's a tough road when you don't have even 90 per cent health and it's a learning curve al the way.

I take a lot of the stuff you do mummy's little dragon.
I take nutri adrenomax and adrenal extra every day and that has helped with fatigue.
I also take one drop a day of nascent iodine and a dropper of ionic selenium.
I've been doing that for almost a year and I think it has halted my hair loss.
I take pau darco and goldenseal ( even though it's not blood group o) I Dowse it and I get a beneficial.
I take a teaspoon of colloidal silver every day. The jury's still out on that one.
I take nutri ultra clear sustain occasionally for leaky gut or if I feel I'm having problems in that area.
I used to make and drink kombucha but I had nagging doubts it was beneficial . Dowsed it and it wasn't so I stopped it.ive made sauerkraut. Not keen on it, I prefer it with red and yellow peppers. I will make some more.
All last winter I drank green juices and I felt not very good on them so I stopped those and swapped to green soup. My body felt much happier. I dowsed and my spleen didn't like the sudden rush of cold food. Maybe juicing isn't for everyone.
I take a parasite cleanse every day. Paracleanse I think it's called.
That has helped enormously.
I make my own tinctures from herbs I buy abroad although Baldwin s are pretty good.
I take ginkgo biloba for memory , blood flow, milk thistle for liver.
I recently felt quite poorly, so I went through my herb stock and brewed up about 8 in a big pan of filtered water and bottled it when cool. It tastes vile but I'll have about 50 ml most days. It certainly helps.

I too think you have to switch things around a bit. Just so your body doesn't get too used to one particular substance.

I also horror of horrors use homeopathy and until she retired last year my 91 year old doctor was a homeopath. An absolutely amazing lady. I don't know when she gave up on allopathic medicine but I became her patient when she was 70 and my gut was so inflamed a drink of water was like drinking battery acid and she literally gave me my life back.

I'll get flamed for this no doubt but I've got my tin hat on and I'd rather be honest about what I do.
It's too late for me to train now but what I've learnt from her over the last 20 years has helped me significantly. My daughter is also a trained homeopath. So I can always ask for help there or dowse for a particular remedy. I also through the dowsing community know a couple of health dowsers so I have got help if needed.
My dh is very supportive when I'm having a whinge about whatever ails me he will prompt me and remind me of things I've tried in the past that worked.
He tells me to write it down. I shall have to act on his advice because one thing I do notice is when you are in pain your thinking process goes right out of the window.
Oh and before I forget another little warrior in my arsenal of remedies is udo's choice, digestive enzymes.
I took them with me on holiday and took one with each meal and stayed surprisingly well while I was there.
I don't think they have lactase in them so will look for some of that next time I go so I can have the occasional ice cream
I think my lactase intolerance is worse than the gluten one to be honest.
I'm thinking of having the proper test as I've never been tested.

I was offered lanzaprole mld and my homeopathic gp warned me not to take it.
I have wondered about taking hold mld but I'm blood group o , we are the meat eaters and are supposed to have the strongest stomach acid and when I dowsed it in a health shop I got that I didn't need it.
Maybe I should dowse it again. It might have been that particular brand wasn't beneficial or I didn't ask the right questions. I do wonder though if I'm digesting my food properly.

Another thing I'm also trying is to not eat less than 3 hours before bed time and then not eat breakfast until approximately 13-15 hours have past in order to rest the system.

Sometimes I think I'm a right barrel of laughs....not but as you age I find you just can't get away with the things you did in your youth and especially if you've had a lot of medications like I have.

It would be good if there was a similar thread in health. Because then those of us who have excellent reasons to be sceptical about some of the advice that's being given could have their say without risking upsetting the OP.

I can offer a hand to hold as well. Read the whole thread and it sound horrific.
What struck me and what PP said, let go of that anger towards yourself. It's crucial for healing.
You didn't cause this, so put no blame on you for any of it.
Your body is battered and badly bruised, but it has also been great, you've been through a lot with your body, it has given you lovely children.

Of course it hurts that you can't be there for your children the way you would like to be, and let there be sadness, but no self hatred please.

I know it is very hard but try self compassion, it will help you heal.

I would also take the company to court, they made a mistake and have to at least finacially help lessen the pain. No place for feeling guilty, honestly. It was their job and they've messed up. They have insurance for things like this.

I hope you get better soon, slowly but surely. It is a tough time but you will get through it.

PS My DH is gluten intolerant, and has 24hours of severe symptoms when eating gluten (vomiting, fainting, fitting) so I can imagine what weeks and months of it has done to you, physically and mentally.

Does that mean you have no issues with upsetting other chronically ill people Bertrand?

"Does that mean you have no issues with upsetting other chronically ill people Bertrand?"

Not what I said. On a general thread about the treatment of coeliac disease/other chronic illnesses it would be entirely appropriate to challenge some of the statements and suggestions that have been made on this thread. On a thread about individuals it wouldn't.