Celiac Disease and Hospital Care

When my husband went in for scheduled surgery, the  hospital delivered in a tiny refrigerator in his room so that I could fill it with gluten-free foods that the nurses could give to him if I was away from the hospital.  I also talked to the hospital pharmacist before the surgery and the dietitians.  The hospital was pretty good about gluten free options for patients, but they failed miserably in the cafeteria  (outsourced to a different company).  I brought my food in and just ordered coffee or grabbed a bag of chips from the cafeteria.  I had nurses or the pharmacy verify every pill, my husband took as they use generics which changed during his stay.  Often, I looked up medications on the gov site (e.g. pillbox) standing right next to the pharmacist.    As celiacs or NCGS, we need to educate the staff and document everything.  If needed,  file a complaint/lawsuit.  Get Congress to pass the bill, “The Gluten in Medication Disclosure Act” 2019.  

I would never trust any hospital around here to feed me gluten-free.  They can’t figure out low carb for a diabetic - just left dessert off the tray, still had a big bread, potatoes, fruit juice & fruit in 1 meal.  Low sodium diet meant they didn’t put salt packet on the tray.  Can’t imagine what they would do to a gluten-free meal!  

4 hours ago, cyclinglady said:

When my husband went in for scheduled surgery, the  hospital delivered in a tiny refrigerator in his room so that I could fill it with gluten-free foods that the nurses could give to him if I was away from the hospital.  I also talked to the hospital pharmacist before the surgery and the dietitians.  The hospital was pretty good about gluten free options for patients, but they failed miserably in the cafeteria  (outsourced to a different company).  I brought my food in and just ordered coffee or grabbed a bag of chips from the cafeteria.  I had nurses or the pharmacy verify every pill, my husband took as they use generics which changed during his stay.  Often, I looked up medications on the gov site (e.g. pillbox) standing right next to the pharmacist.    As celiacs or NCGS, we need to educate the staff and document everything.  If needed,  file a complaint/lawsuit.  Get Congress to pass the bill, “The Gluten in Medication Disclosure Act” 2019.  

I live in the Netherlands and we have a different judical system. You can not sue  a hospital for something like this. No way you can prove your case! But the little fridge is a good idea. Today I had to go to the new hospital and during lunctime I could get a nice gluten- and lactosefree salad in the cafeteria. They were very helpful and asked many questions about the diet. At the end I had a very tasty lunch and no complains. So I'm more optimistic now.

3 hours ago, kareng said:

I would never trust any hospital around here to feed me gluten-free.  They can’t figure out low carb for a diabetic - just left dessert off the tray, still had a big bread, potatoes, fruit juice & fruit in 1 meal.  Low sodium diet meant they didn’t put salt packet on the tray.  Can’t imagine what they would do to a gluten-free meal!  

Worse yet......nursing homes.  Someday, we are all going to be elderly and may need specialized care.    Anyone interested in opening the first dedicated gluten free nursing home?  

33 minutes ago, cyclinglady said:

Worse yet......nursing homes.  Someday, we are all going to be elderly and may need specialized care.    Anyone interested in opening the first dedicated gluten free nursing home?  

I'm 76 and I also fear the nursing home, where the cleaning ladies are tought to give insuline shots. My former cleaning lady told me so. So I asked her what she would do with a patient with low sugar? "Give him an extra shot insuline", was her answer!!! As if it was an aspirine! And don't ask her about gluten- and lactosefree meals, she has no clue!

On 7/17/2019 at 3:36 PM, Elisabeth Gerritsen said:

I'm 76 and I also fear the nursing home, where the cleaning ladies are tought to give insuline shots. My former cleaning lady told me so. So I asked her what she would do with a patient with low sugar? "Give him an extra shot insuline", was her answer!!! As if it was an aspirine! And don't ask her about gluten- and lactosefree meals, she has no clue!

My fear as well.. I've had several friends in rehab centers within nursing homes and talked to the nurses there and they had no clue what would be gluten free or not on their menu.   My last stay in the hospital after they brought me several meals with gluten containing bread, gravy, toast crumbs on the eggs.  My doctor told them I would only be eating things that were in sealed containers from the manufacturer.  I had yogurt, fruit cups, milk, cereal (they had rice chex believe it or not) and pudding.  He had put a sign on my door that I was not aware of that said All food and medication MUST BE GLUTEN FREE NO EXCEPTIONS with his name at the bottom.. they ignored it     scary place to be

That was great, I wish they did that here too.  But to make my case more complicated: I am lactose intolerant too, so  there is hardly anything suitable for me you can buy! And I have nobody who can cook for me. And as I am a diabetic, I can not take insuline unless I eat straight after the shot. I think I will move to the USA