Any Experience Trying to be gluten-free while Hospitalized?

[Rhobhan]

I am facing a potential surgery which may require several days recovery in the hospital. I am more terrified of being glutened by hospital food than of the surgery itself!

I know I should ask to consult with the chief hospital dietitian, but I see cross contamination as the major problem.

Has anyone else had any experience in the hospital, and what did you do?

[Fenrir]

I work in a hospital and eat at their cafeteria frequently. They are aware of proper procedures for food allergies. Hosptials have several RD'S so as long as you make sure they know you have celiac it should be OK. 

 

 

[Rhobhan]

I live in the Midwest where there seems to be a dearth of knowledge about celiac disease. Perhaps you live in a large city where medical staff are more educated about celiac.

i have been glutened countless times over the years by restaurants who claimed to have taken steps that proper cooking procedures were taken. In the bowels of a large hospital kitchen, it is hard to imagine the myriad people handling your food would be that careful.

My aunt had to be in a nursing home for awhile, and despite the fact they knew she had celiac disease, constantly brought her gluten containing foods with her meals—gravies, biscuits, bread etc.

 

 

[Fenrir]

9 minutes ago, Rhobhan said:

I live in the Midwest where there seems to be a dearth of knowledge about celiac disease. Perhaps you live in a large city where medical staff are more educated about celiac.

i have been glutened countless times over the years by restaurants who claimed to have taken steps that proper cooking procedures were taken. In the bowels of a large hospital kitchen, it is hard to imagine the myriad people handling your food would be that careful.

My aunt had to be in a nursing home for awhile, and despite the fact they knew she had celiac disease, constantly brought her gluten containing foods with her meals—gravies, biscuits, bread etc.

 

 

Well, actually, not all gravy contains gluten.  All of the gravy we serve at our hospital is gluten free. The Chili is gluten free. Not saying the nursing home was serving gluten-free gravy but commercially prepared gravy is available gluten-free and served by many hospitals. 

The key is letting the Dr and nursing staff know of the need for gluten-free, they should be able to work with their nutritionists to get you safe meals. If you worry about that at all ask your Dr if you can have a family member bring you meals or ask for fruit and veggies.  

I'm from rural MN, BTW.....

[cyclinglady]

I live in LA.  My husband had major surgery about a year and a half ago.  We did our due diligence. We went ahead of time and talked to the pharmacist and the dietician.  While we felt comfortable that the hospital dietary department could keep my hubby safe, we were told flat out, that I would not be safe in the hospital cafeteria which was outsourced.  The hospital offered and did bring in a mini refrigerator  that allowed for me to bring in meals or snacks for both of us.  I kept it stocked with yogurt, cheese, fruit, veggies, etc.  The only purchase I made in the cafeteria was for black coffee.  No need to buy certified potato chips at $3 a tiny bag when I could bring in a large bag purchased from the grocery store 1 block away.  I had made casseroles in advance, but I ate those.  Not in the hospital, but in my small camper that was parked in the hospital parking lot (got to know the security guards).  

I inspected all hubby’s food when he was allowed to eat.  It all looked fine.  His nurses were terrific.  I re-verified all his medications as the hospital seemed to change genetics, often in the same day.  The head pharmacist really had no idea how difficult or labor intensive it was to verify a drug’s safety for a celiac and admitted it to me.    Granted, I know that few drugs actually contain gluten and are usually made in a sterile environment following FDA protocol (hubby was in bio-med manufacturing), but I made it a point to draw awareness.  His nurses would even call me before administering his meds.  They were terrific!  

Please go talk to the head of Dietary.  No sense worrying about it until you have the facts.  I get the nursing home fears.  I hope that a dedicated or allergy friendly home is built even If I have to do it myself.  It is either that or we are moving to an home located close to a dedicated gluten-free restaurant and my meals are delivered or all meals delivered to the nursing home.  Another option is to live on a cruise ship.  They do a very good job, but that takes some dough.   I am saving my money now!  

Bring in your bag of food.  It will bring you comfort and you will heal faster.  You might not even need it.  Stick to simple foods like grilled chicken, rice with gravies.  No need letting your food grow cold waiting for someone to verify if it is really really gluten free.  No need to live on jello alone.  

Finally, you have patient rights.  Research and understand them.  Document.  Ask to read your charge.  Make sure you have all your insurance approvals and know that an ombudsman is usually available to defend your rights or a social worker.  Get a letter from your GI stating your need to be gluten free.  Be nice.  Be nice. Be nice.  Yeah, three time, because this is critical.  Get people on your side.  

Then you can relax and get well.  I hope this helps you and anyone else.  

Edited February 4, 2020 by cyclinglady

[Fenrir]

Yeah, hospitals will probably vary from one to the next as far as how celiac friendly they are. I happen to work at ours so I have access to things regular folks wouldn't. The kitchen ladies let me inspect all the packages and ask me about what they can put in things or not. It's a small hospital so I'm able to influence things a little bit. 

[cyclinglady]

17 hours ago, Fenrir said:

Yeah, hospitals will probably vary from one to the next as far as how celiac friendly they are. I happen to work at ours so I have access to things regular folks wouldn't. The kitchen ladies let me inspect all the packages and ask me about what they can put in things or not. It's a small hospital so I'm able to influence things a little bit. 

That is great!  Building celiac disease/gluten-free awareness takes a team effort.  Now for my local hospital.....?

 

 

[Clhaddon]

I was in the hospital 3 days for back surgery and had properly notified the staff of my celiac disease.  This is hard to believe but the first evening they had to send out for a loaf of gluten free bread and gave me 2 slices if bread and some chicken for dinner and the only improvement for lunch and dinner after that was a salad.  I did get eggs for breakfast thankfully.

[Sara Ann Denson]

I've recently stayed in the hospital not for myself but as a bedside helper for elderly relatives.  I have found there can be drastic differences in what's available and what's understood between two different hospitals in the same city.  I think you should do your research ahead of time in all available hospital options. It might help others to let the hospitals you end up not choosing know why they didn't meet your standards so that they can up their game.  It will definitely make you feel like you will be taken care of in the hospital of your choice if you know how they meet the needs of the gluten-free community.