You are really lucky that you were even offered a Gluten Free menu!

In my hospital there is no such thing and the dietition, without even bothering to speak to the patient, orders food directly for you. In my case I lost 8 lbs in the week that I was in because I don't eat meat - I eat fish, eggs etc. I don't eat fatty foods like chips as I can't digest them and all my meals consisted of meat based with chips so I was left with one small portion of watery frozen veg for lunch and tea.

Breakfast was long life bread, not allowed to toast it because of the cross contamination (at least they knew that). No soup, no puds, no snacks like other patients (bikkis and cake). Basically I existed on 2 sliced Glutafin bread morning. Veg at both meals with mash if it was sent or without if it was chips plus ice cream which I can't eat. Fish came on Friday lunch.

Despite the Consultant and ward sister demanding the dietition come to see me to sort out some nutrition they refused and said if not happy bring in my own food. How to do that when I live alone and no visitors during the week. What has happened to the NHS!!!!!!!!!

Sorry to rant and hijack your blog. x

Elspeth, My heart goes out to you. What are Coeliac UK doing about this sort of thing? Have you contacted them? Surely, as a charity they would be supplying information about Coeliacs needs and essential requirements to hospitals!! I'm not sure but isn't Diabetes UK a charity too? I would have expected such charities to automatically notify hospitals at least with relevant information concerning patients in their care. More importantly, I would expect a hospital to be up-to-date on medical knowledge regarding the expected nutrition and welfare of all of their patients.

I am not sure whether you may feel that you would like to pursue the lack of knowledge and care regarding food for both your conditions. If you do then perhaps an email might be an option.

If you should wish to contact Rt Hon Jeremy Hunt, Secretary of State for Health -
www.jeremyhunt.org/contact
The Department of Health link from his site is:
www.info.doh.gov.uk/contact...

I find the fact that anyone ill has to explain their needs to this extent horrifying.

I hope that even with this experience you are feeling better, Elspeth.

Best wishes.

Thanks Lynxcat! I will email them both! You really wouldnt think you would have to explain either condition to nurses especially but my experience over the years has told me that I have to look after both conditions when in hospital and defo not leave it to anyone else... god forbid I end up in hospital being so ill I cant look after myself and they end up making me more ill!!!

As you say, this is truly frightening! If you do decide to contact Jeremy Hunt, please keep us all informed what he says and hopefully proposes to do to improve matters.

I will do Lynxcat! I will start composing an email just now! This sort of thing needs to be sorted!

I think you are right. We all need to be a bit more assertive or things will never improve for any of us.

It is so ironic Elspeth, Coeliac UK have issued this link on Facebook today ......
www.coeliac.org.uk/gluten-f...

At the bottom of the page link it states this:

"If you are not happy with the food that is provided during your stay then we would recommend speaking to the ward staff about this while you are there. You can also ask to speak to the hospital dietitian who may be able to talk to the catering staff on your behalf.

If you feel more comfortable speaking to someone after your stay, you can contact the Patient Advice and Liaison Service (PALS) at the hospital. Each hospital has a PALS team and they are there to listen to patients, their relatives, carers and friends about any positive or negative experiences they have had during their hospital stay. They will try to answer any questions and resolve any concerns as quickly as possible.

You could also contact the Nutrition and Dietetic team at the hospital directly and let them know your concerns. They can then pass your feedback on to the catering department on your behalf."

.. just thought you'd like to see this. I wonder if others have contacted them regarding problems with food in hospital stays?

Oh my god!! its perfectly ok to hijack my blog with all that! I am totally shocked!! Although when I think about it I dont know why all this should shock me! Its fairly typical!!
I took my own bread into hospital with me cos I know I can eat it fresh or toasted and I had a feeling the bread they would try to give me would be horrible and I was right to cos they had a glutifin loaf that needed toasting to refresh it there for me! which was a good thing compared to the experience you had!
On one of the days I was in there wasnt a meal ordered for me so they had to phone down to the kitchen and order something suitable which was duly sent up! When I got it it was a ready meal! all in the tray with holes in the lid for microwaving! Nutritious and tasty eh? NOT!

Elspeth. I recommend you email your Primary Care Trust to complain (whilst they still exist!) and contact PALS at the hospital. It is also worth emailing your local MP to take up the complaint with the Health Minister as trying to contact him directly can be tricky.

I recently had a hellish 4 day stay in hospital as an emergency. This is when we are more at risk as we cannot plan our meals. Luckily the menu I was given (which I asked for!) showed 'no gluten containing ingredients' 'low GI' 'Veggie' options etc. However, like you I was NEVER offered a GF breakfast and had to beg for one each day as the strong meds I was on needed to be taken after food. One day when I complained whilst in extreme pain the nurse said 'can't you just eat that' i.e. a mini Warburton's cake that one of my visitors had left for me. I swiftly replied I wasn't eating cake for breakfast and I wanted a yogurt or banana. Eventually I got a nice Nurse who made the effort to get me a Muller Yogurt that appeared to be GF. It seems that in hospitals the breakfasts are toast / cereal (god forbid they offer fruit - maybe that's too healthy?!). Any out of the ordinary food orders have to be booked in the day before and they can cook it fresh if they have a hospital kitchen. But then you have the worry of cross contamination.

We've chased Coeliac UK about this big issues many times. Perhaps we should all email our local MPs pointing out this disturbing lack of care in the NHS? Sadly many Drs and nurses are ignorant as to what Coeliac Disease is. I also wondered why on my name board it didn't state Coeliac (no gluten etc) as that at least would be a signpost/ talking point to staff. All in all it was pretty poor especially considering I couldn't feed myself or move. It is worrying that in this day and age things aren't more organised. The only way to change it is to complain.

Unfortunately it's not just patients who are put at risk. I am a nurse and was on a training course at a hospital and in the canteen asked what the gluten free option was. The server went into the kitchen 3 times as I asked her to double check and I still got glutened..



I complained and got an apology but I was violently sick and had a tender tummy for 3 days afterward, never mind the long term consequences..

As an emergency nurse i do know that Coeliac isnt something that we deal with very often in hospital, i can think of only once that someone has actualy told me they were coeliac - and then were delighted because i knew what i was talking about. In fact they told me that the hospital ordered in gluten free bread,

However i think it is absolutely disgusting that the nutrition team refused to come and see the lady, after all surely that's their job. The profile of diet should be much hifger priorty especially when someone is incapacitated, and not everyone has relatives/friends that are able to bring them food in - not that this should need to happen anyway.

Complaining is definitly the way to go especially though the higher authorities, often now the catering is by a seperate company from the hospital.

I'm an Endoscopy nurse, I have coeliac. A coeliac patient came down from the ward to have an endoscopy. We talked about our diets and he said he'd had to bring his own food in because a gf diet wasn't provided. We can order gf food from the kitchen so I was disgusted. Hospitals have to provide Halal, Kosher, diabetic and vegetarian options for patients and all hospitals should be providing gf meal chioces.
Write a letter of complaint to the Chief Eecutive, go straight to the top of the managemnet structure. It will have to be acted upon.
Coeliac is poorly understood by most medical professionals and nurses too. I'm afraid that until I was diagnosed I didn't know about it because I had never nursed a patient with it. Nurses and Drs don't know everything about everything, we are human, well some of us are.
@ Weee, I never eat in our canteen but they do have gf menu options, cakes and biscuits. The dieticians are really helpful in my hospital and we have a nurse lead Coeliac clinic. COMPLAIN! Deprivation of human rights etc...

PS, this is the best place to come for discussions about coeliac. I've given up with Coeliac UK and withdrawn my membership. I've chosen to give my money to Pancreatic Cancer UK Research instead.

violetkathy - really glad to hear you like our site ; ) thanks for the feedback.

I do like this site, very much. I've learned things from this site and I've passed on information too. I've just had a second daughter diagnosed with coeliac and I'll be recommending this site to her too.
I'm not saying that Coeliac UK are a bad organisation, they raise money for research but they seem to take a long time to answer queries and I don't always find their info correct or up to date. I'm one of those coeliacs who has zero tolerance of gluten and I believe that gluten free foods should be gluten free not containing less than20ppm gluten! If someone has an auto immune response to gluten it's logical to assume that they'll have an auto immune response to even a small amount of gluten.

I had similar but not as bad. Two years ago had a major op, no GF menu and had to adapt existing menu which was fine as we are used to that! However the cross contamination I had to explain all the time not to mention that I had expersilly stated well before hand and completed tha paper work to let them know months in advance, however when I arrived no one knew! I had to keep saying it and checking all the time. At the time and since when I look back not good especially if you are seriously ill and you are reliant on them looking after you!! Yes I was a little shocked mainly because you would expect the Hospital staff to know!! I suppose at the time I should have written to someone, never thought as I was pretty ill. Good for you and hope you get the response you should have.

And yet it is assumed that Coeliacs have their own toasters and not just a case of shake out the crumbs.... I am seeing double standards.

Hi all the Australian perspective.

Australia and New Zealand have very tough laws re gluten free after a lot of work by the coeliac societies of both countries.

However a coeliac would be wise to keep away from hospitals. Gluten free is not an option at all. Dieticians hold hands in air with despair as most meals are prepared of site so no gaurantee can be given as to the safety of meals.

So don't blame your coeliac society blame the medical system. My vent finished.

I was in hospital for the better part of a day (about ten hours) earlier this year, and was offered nothing but a sandwich. When I said I couldn't eat it because I don't eat gluten, I was asked if I'd like some biscuits instead. I had felt quite nauseated before I went in and wasn't able to eat breakfast, so by the time my husband came back with some soup for me I hadn't eaten in over eight hours.

About twelve years ago I was put in hospital over the weekend to try a combination of drugs - including an MAOI - which carried the risk of raising my blood pressure. Though the MAOI, which is dangerous in combination with some foods, was being administered by the hospital, they had no idea what to feed me and what was prohibited. I had to ring my mum, who looked it up on the internet for me. Someone on the ward (a nurse? a porter?) said it meant I couldn't eat marmalade; it's Marmite that's actually prohibited.

One of my grimmest worries is that I will end up in hospital with no one to help me. The level of ignorance (see marmalade vs Marmite) is worrying.