Overnight Hospital Stay

[behr08]

Hey everyone!  Hope this is the right board to post to.  

I have an upcoming surgery (partial thyroidectomy) at the Celeveland Clinic (Marymount).  Has anyone stayed there?  Or have any overnight hospital experience since being diagnosed?

Aside from gluten-free I will also need a dairy free diet.  Should I plan to pack my own food, or are they pretty good about this stuff and offering a decent selection? ... And will they allow me to eat a packed lunch if I bring one (providing I'm not on liquids)? 

[Xiao Bai]

Hospitals are notorious for glutening their patients.  It has happened to me several times.  The most recent was two years ago.  I went to a very high-end hospital for an appendectomy.  They sent a nutritionist to talk with me for an hour, put a special bracelet on me so all the staff knew I had celiac.  But the food was full of gluten.  Soup with flour as a thickener, etc.  The problem is that there is a serious disconnect between the nutrition specialists and the actual kitchen staff, who in the part of the world where I live, nobody has heard of gluten or celiac.  If it is too inconvenient t take your own food, I advise eating ony plain foods - hard-boiled eggs, raw vegetables and fruit with no sauce,a plain baked potato if you can get it, or otherwise plain white rice, though even that can be iffy.

Any future hospital visits for me will be viewed as opportunities to lose weight fast.

[Judy3]

I agree totally, the last time I was hospitalized I had the same experience nutritionist, band on wrist, doctor wrote in large letters on my door.... still they brought me food with gluten.  I refused to eat unless it was something with a manufacturers cap on it  (milk, pudding, yogurt...)  or fresh fruit that I made them wash in my bathroom.    My doctor was livid that they did this to me.   Potatoes with gravy with a roll on top!!    In a hospital   wow   If I ever need to be hospitalized again I will be more scared of eating than why I'm there.   

[Ennis-TX]

I actually have red medical dog tags with my medical info, allergies, emergency contact, and AI issues on them, and my emergency contacts know where I keep emergency food bars and shakes to bring if I end up in the hospital. I have MRM Meal replacement which is a low carb vegan protein meal replacement, ANd while not the best tasting I have a mixed stash of Julian Bakery Paleo and peagan protein bars, 2-3 carbs each grain free, very low sugar bars.   I also keep stashes of Miracle noodle Meals Ready to Eat stashed in my fridge.   These are all low carb emergency meals in case something happen I have options for foods that will not cause me issues and I can have ready to go right out the package.

[cyclinglady]

Every hospital is different, but I have experienced gluten free mis-haps personally.  In the future, I am going to bring my own gluten-free food and access to the internet (check medications etc.) and post a big note that states if you do not take my health insurance and I am not coding, then get out of my room!  Always ask to see your chart.   Mistakes are stupidly made and you have to be your own health advocate.  Sad but true!  Be prepared!  

[behr08]

2 minutes ago, cyclinglady said:

Every hospital is different, but I have experienced gluten free mis-haps personally.  In the future, I am going to bring my own gluten-free food and access to the internet (check medications etc.) and post a big note that states if you do not take my health insurance and I am not coding, then get out of my room!  Always ask to see your chart.   Mistakes are stupidly made and you have to be your own health advocate.  Sad but true!  Be prepared!  

Thanks everyone!  Very helpful!  I will be sure to pack and order safe foods.  The medications is another big worry of mine.  I just pray they take me seriously and understand.  I will be sure to question anything and everything I have to take orally, but I worry about surgery too.  

 

Thanks again! 

[cyclinglady]

1 hour ago, behr08 said:

Thanks everyone!  Very helpful!  I will be sure to pack and order safe foods.  The medications is another big worry of mine.  I just pray they take me seriously and understand.  I will be sure to question anything and everything I have to take orally, but I worry about surgery too.  

 

Thanks again! 

Oh, have a copy of your celiac test results?  Bring those too in case anyone questions your celiac diagnosis.  I am serious about checking your chart (read it) and noting celiac disease on that eraser board so often found in patient rooms.  Bring a eraser board marker!  Talk to all your doctors, nurses and ask even for a dietician consult (though frankly I have met some in-hospital stupid ones.....).  

Me:

"I can not eat this food.  I just had gallbladder surgery late last night (on an out-of-state business trip).  Please bring me a liquid diet."

Nurses:  "Doctor said you must eat before we discharge you." 

Me: "I get it.  But for months, I had serious pain when I ate.  Even when I last ate,  the pain was severe.  Let's test with a liquid  diet first."

Nurses: "You must eat this."

Me:  "Call the dietician."

Dietician: "Doctor said you must eat this.  It is in your chart!" 

Me: "Let me see the chart!"

Dietician and Nurses: "Chart says progress to a regular diet. Oh......progress.  We will bring you a liquid diet to start."

[cyclinglady]

Doctors:  Because you were found unconscious on your bathroom floor, had vomited, had a nose bleed (found in a pool of blood), had/have back pain so that you could not get up, had very low blood pressure,  and an a slightly unusual EKG, we are sending you for a stress test.  

Me:  A stress test?  My back is killing me.  I am a runner, but I do not think I can run on a treadmill.

Doctors: This is nuclear.  You just lay on a gurney and then we scan your heart.  

Me: No.

Doctors (to my family...my kid is there):  if you were my Auntie, I would do this test!

Me (after my family freaks):  okay.

Test Room Nurses and Doctors:  We will feed you a nice sandwich while waiting for results.  Coffee or Coke (caffeine) helps clear the medication so you do not have a headache.  

Me:  I have celiac disease and must be gluten free.  Can someone run to the kitchen?

Nurses/Staff: No. 

Test Results....Perfect.  I am starving, but okay.  I drank some black coffee.   I am good to go for another 50 years.  No build up.

One week later following up with my PCP:

Doctor:  Let's bring up your hospital chart.  Wow!  You had an x-ray.  You fractured two vertebrae.  Didn't anyone discuss this with you as a source of your back pain?  

Me:  No.  They just saw a middle-aged woman who might have had an MI (heart attack).  

Doctor: Your fractures might have been a result of osteoporosis due to celiac disease.  Let's get a bone scan.  

Moral of the story?  Be your own health advocate.  Question everything and if you can not, designate a trusted family member or friend to fight for your rights!  

Oh, the passing out thing?   It happens.  Often.  Not related to celiac disease, but Mast Cells gone wild thing.  Usually, I can get off the floor.  ?

[behr08]

Wow, I'm so sorry you dealt with that.  I will definitely take a copy of my results.  

[cyclinglady]

Not meant to scare, but to educate.  ?