Celiac Disease and Hospital Care

I have been hospitalized many times and it has always been a complication with gluten-free food. I have had Drs even say it's okay just eat the food it'll only give you a little stomach ache. Really disgusting to me

I stayed in a major hospital for a week and was offered a “Gluten Friendly Menu”!? They were giving me a potentially gluten-free broth in what appeared to be an older porous plastic bowl which I refused. I lost more weight than I should have during my stay. I had to rely on others to bring me safe food. Once I was home, I tried repeatedly to contact the head of food services but got nowhere. This is a dangerous way to take care of patients.

I work in a hospital, and it is difficult to get gluten-free foods in the cafeteria.  Foods are not labeled with allergens or nutritional content.  Very frustrating!

Every single procedure and surgery since 2007 (I've actually lost count) has required me to bring my own gluten-free food or cookies for recovery.  Once I had to spend the night and they offered me a gluten-free breakfast, but I did not trust it and only ate what was sealed from the original company, like yogurt. 

It is not getting any better in the Netherlands. I  had a heart attack and they took me to the ER. No gluten- and lactosefree food! Nothing to eat at all! They told me I had to order my special diet one week in advance!!! As if I knew when I would get a heart attack!  In the morning they send me home because they had nothing to eat for me. I am also insuline dependent, so the poor taxi driver could have a huge problem while taking me home.

1 hour ago, Elisabeth Gerritsen said:

It is not getting any better in the Netherlands. I  had a heart attack and they took me to the ER. No gluten- and lactosefree food! Nothing to eat at all! They told me I had to order my special diet one week in advance!!! As if I knew when I would get a heart attack!  In the morning they send me home because they had nothing to eat for me. I am also insuline dependent, so the poor taxi driver could have a huge problem while taking me home.

 

"They told me I had to order my special diet one week in advance!!! As if I knew when I would get a heart attack!"

Wow. It never occurred to me until I joined these forums that people with a medical condition could not get safe food in hospitals. I read your stories and it is sad, frustrating, and frightening.

Thank you for sharing your stories to help others like me. I enjoy how you tell the story with humor and sarcastic wit. As I am sure it was painful and upsetting to go through. I hope you are doing well. 

20 hours ago, Mr. Pep'r said:

Every single procedure and surgery since 2007 (I've actually lost count) has required me to bring my own gluten-free food or cookies for recovery.  Once I had to spend the night and they offered me a gluten-free breakfast, but I did not trust it and only ate what was sealed from the original company, like yogurt. 

"Only ate what was sealed from the original company, like yogurt"...this seems to be the easiest way for hospitals to accommodate.  They should have a supply of sealed individual serving packets of gluten-free & nondairy foods (which is really quite easy!) such as canned tuna, chicken, sardines, packaged deli meats, olives, cheese, hard boiled eggs, rice crackers, gluten-free cereals, nondairy milks, on hand.  I cannot comprehend why health isn't top concern in a hospital.  But I've had the same experience in hospitals, and it causes a lot of stress at a time that healing should be the focus. 

1 hour ago, Awol cast iron stomach said:

I hope you are doing well

Yes thank you, I'm fine now. I moved house and city. My new hospital has its own cook and he also delivers gluten-free food at home when necessary

I was a patient in a rehab hospital when I had hip replacement surgery (twice).  I gave them my information and my additional allergies.  First meal there, everything I put on my allergy list was on my plate.....go figure.....I called the kitchen.....someone came up and took my info again......no dairy.....I received during the day, yogurt, ice cream, pudding and a box of white milk!!!!  I told them they were trying to kill me!!!  My husband bought gluten-free meals for me and they were supposed to put them in the freezer labeled!!!  "Forgot!"  I was so disgusted.  Ruined the food.  When they bought it and had it prepared, it arrived with a huge piece of white bread on top of the food!  When I went to new hospital almost the same experience, but when my husband was a patient I asked to speak to the chef and in doing that, I mad e a friend and was able to find a way to have a decent gluten-free meal while he was a patient.  I do not trust anymore!!!!!!

I'm really nervous if I ever had the need to go to the hospital for an extended stay. Being celiac is hard enough, but I also have an egg allergy and can't have dairy due to the casein in it..that would take a lot more off the "menu". So I'm trying really hard to stay as healthy as I can.

My last hospital stay my friend brought my cooler to my room with my food in it. Nurse would heat up my soup container for me.

7 hours ago, Guest Marie G. said:

I was a patient in a rehab hospital when I had hip replacement surgery (twice).  I gave them my information and my additional allergies.  First meal there, everything I put on my allergy list was on my plate.....go figure.....I called the kitchen.....someone came up and took my info again......no dairy.....I received during the day, yogurt, ice cream, pudding and a box of white milk!!!!  I told them they were trying to kill me!!!  My husband bought gluten-free meals for me and they were supposed to put them in the freezer labeled!!!  "Forgot!"  I was so disgusted.  Ruined the food.  When they bought it and had it prepared, it arrived with a huge piece of white bread on top of the food!  When I went to new hospital almost the same experience, but when my husband was a patient I asked to speak to the chef and in doing that, I mad e a friend and was able to find a way to have a decent gluten-free meal while he was a patient.  I do not trust anymore!!!!!!

Horrible, this was not a mistake, this was a "on purpose"! They just don't believe you and  they have no knowledge about celiac and dairy free!