Glutened in the hospital ward with rice krispies told they were GF now told they were Kellogg's which have barley malt.

[Mia1057]

The staff say they are sticking to the dietician's sheet. Any help with coping?

[Hidden]

Get someone to bring you in the food and drink directory..It makes me really angry that hospitals get feeding us so wrong. I can cope with restaurants etc but a medical establishment should be able to deal with a medical diet. They manage veggie food and halal food which are basically choices but a disease .....well it's dreadful. You could ask to speak to the person who does patient support within the hospital and see if they can help. Good luck and I hope you are soon out of there. Actually just a thought, if you're posting this then you could go on the coeliac uk website and show them that their list is out of date.

[meanioni]

Stick to your guns on this. Many big brand cereals will have issues - malt is a common additive and malt is emphatically not gluten free!

[Mia1057]

I will thanks for the help. It's so bad because I had a session with the dietician here yesterday in the ward.

[Sappho]

ask to see the dietician you saw yesterday and ask them to sort out the misinformation that the hospital is operating under. They need to be aware of this so they stop doing it.

[Mia1057]

Thanks Sappho, great advice

[Lynxcat]

Hi Mia1057, I would speak to the dietician once again and tell her that you a problem with any food that is not naturally free from gluten. In other words your body cannot process any food that has been obtained from grain: this embraces Codex wheat starch; all of the wheat and barley sugars like dextrose and dextrin and malt including vinegar and sauces.

Whilst in hospital and though it may not be as you would eat at home I would suggest that you ask for boiled rice, vegetables and meat or fish for your main meals preferably dry (without sauces), Baked potato with knob of butter but no fillings also with vegetables and meat or fish. For breakfasts ask for plain puffed rice - if you can get someone to bring in some flaked almonds; walnuts; etc to sprinkle on top or eat as a snack for extra nourishment. Perhaps a couple of boied eggs for alternative - remember that many cooks use vinegar in water when they poach an egg.

Your main argument must be that you have reactions with all types of grain even if the gluten has been mechanically removed.

I have found that I too can no longer eat any form of any food if it has been produced from grain. The list from Coeliac UK is not free from all grain produce as they list products up to 20ppm of gluten and this is enough for many coeliacs to bring on a gluten attack.

[Mia1057]

Thanks Lynxcat unfortunately I also have chronic kidney disease and have had a relapse so its low pottassium, protein and fat for me. I will ask for the rice but no baked potatoes, protein only 3 times a week and no tomatoes. The dietician is coming back to see me in an hour or so.

[Hidden]

One hospital meals gluten and lactose free, at another just gluten free. Also a dietition had no idea about codex wheat and actually said better ask your gp, thats the gf bread we have here I dont know about codex. What about breakfast porridge, bet they give that as OK.

[Mia1057]

Saw the dietician looks like the only bread that the hospital has has codex wheat in it so that is out as i have a big reaction to it. Feel like i am abnormal because i cant eat the foods that "normal" coeliacs do. Her words not mine. have asked for fruit for breakfast will wait and see. I have less problems in restaurants than I have here.

[Hidden in reply to Mia1057]

Tough if elderly and friends also elderly and unable to fetch food or visit. One gets what one is given. A nurse who didnt understand, even though explained to said Go on just have one biscuit for now. Nurse was everso pleasant but no help to a coeliacs food intake no matter how caring.

[Hidden]

I had a bowl of Morrisons version of rice crispies on Wednesday thinking nothing of it to read the label as I had been eating bread etc on purpose to be tested for Coeliac.

I became very ill not long after wards and was even told by someone in the local shop I didn't look well at all and I didn't feel well,I looked in the mirror when I got back home to find I was grey looking...the packed said contains gluten and in the ingredients was Barley high up the list ,this also happened to me when I was pregnant with with Kellogg's Honey nut flakes which also had Barley in it.

When I was in hospital having my daughter the hospital was quite good with me by getting gluten fee biscuits in just for me and at that time i was just down as gluten intolerant but nothing else was gluten free and had to keep telling them when the food appeared.

I did find it almost laughable one a trip to a&e thinking I had gf toast stuck in my throat,that after a conversation on why I was eating gf bread to then be offered a biscuit.