Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Unexpected Hospital Stay And Dietary Nightmare
0

25 posts in this topic

Last Thursday I had surgery to repair an abdominal hernia. It was supposed to be a one day surgery.  I knew there may be a chance I would have to stay over night and though nothing of it ( I had planed on having my daughter bring me food from home)

 

Well the best laid plans    <_<  Things did not work out as planned and it was a dietary nightmare .  I ended up staying over night and because my surgeon ordered  a diabetic diet my daughter was not allow to bring me in anything to eat .

 

Long story short : the staff told me I had to eat something before I could leave . The ONLY thing and I do mean only thing on the menu even close to something I could even risk  eating  that they would allow me to order( because of the diabetic diet) was cream of rice . So I ordered it . The girl brought it and said" here is your cream of wheat"  . Seriously  I mean SERIOUSLY ,,, ,MY Chart said celiac right on it , I told the person that took my order I was celiac and they bring me CREAM OF WHEAT !!!!!!! They may just as well served me rat poison !!! I lost it !!!!!!!!!!! 

 

When the nursing staff was trying to calm me down the RN on duty all but snickered at me when I said I could not eat the eggs on the menu because they had gluten and probably  soy in them  ( powdered eggs because institutions  are not allowed to have raw eggs on the premises)

 

The Dietitian finally  came up to talk to me and offered to go to the store to buy me what ever I wanted . Not that easy .

 

She asked me what I eat at home so they could fix it for me . Not that easy .

 

Finally my  surgeon    comes in to release  me ,  the nurses  and I fill him in on whats going on and   he writes an order so my daughter can bring me food from home . So I can go home . Easy

1

Share this post


Link to post
Share on other sites


Ads by Google:

All I can do is shake my head, Chill.

 

Cream of wheat. Morons.

 

My biggest fear is being stuck in a hospital, or (later down the road)  a nursing home.... or a jail (not sure WHY I'd be there, but it's on my list of places to avoid :lol: ) and getting glutened left and right by well-intentioned staff and my brain starts to fritz.

 

(shudder)

 

Glad you are home safe and sound!

2

Share this post


Link to post
Share on other sites

Oh my goodness:(. I'm just shaking my head at the absurdity of it all.

I'm glad you are home, feel better soon :)

1

Share this post


Link to post
Share on other sites

were you a prisoner?....THIS JUST IS MORE THAN I CAN TAKE.!  They can NOT forbid food from home, can't force you to eat, when you get your post hospitalization survey, GO TO TOWN!!  geesh

0

Share this post


Link to post
Share on other sites

What an absolute nightmare! No wonder you lost it! I think anyone would in your position. It makes you wonder how these people can be qualified io have a job in a hospital. It's no better across the pond either, I'm afraid to say. :-(

All I can offer is sympathy. Apart from the food fiasco, hope the surgery went well.

1

Share this post


Link to post
Share on other sites




All I can do is shake my head, Chill.

 

Cream of wheat. Morons.

 

My biggest fear is being stuck in a hospital, or (later down the road)  a nursing home.... or a jail (not sure WHY I'd be there, but it's on my list of places to avoid :lol: ) and getting glutened left and right by well-intentioned staff and my brain starts to fritz.

 

(shudder)

 

Glad you are home safe and sound!

 

 

Agreed, a hospital ,  a nursing home and ,, most certainly,   jail are on my list of places to avoid  ^_^

1

Share this post


Link to post
Share on other sites

What an absolute nightmare! No wonder you lost it! I think anyone would in your position. It makes you wonder how these people can be qualified io have a job in a hospital. It's no better across the pond either, I'm afraid to say. :-(

All I can offer is sympathy. Apart from the food fiasco, hope the surgery went well

Thanks flowerqueen ,, yes the surgery went very well :)

1

Share this post


Link to post
Share on other sites

were you a prisoner?....THIS JUST IS MORE THAN I CAN TAKE.!  They can NOT forbid food from home, can't force you to eat, when you get your post hospitalization survey, GO TO TOWN!!  geesh

Oh I plan on it ,, I am not sure I will wait until get my survey ,,, I am still enraged over this ,,, I may call the hospital on Monday to complain .

1

Share this post


Link to post
Share on other sites

The think what has taken me aback the most ( besides their complete ignorance    of celiacs ) is  I thought I was prepared . I had it all planned out . I did not realize there where " rules" that would prevent me from bringing  my  own food from home .

1

Share this post


Link to post
Share on other sites

were you a prisoner?....THIS JUST IS MORE THAN I CAN TAKE.!  They can NOT forbid food from home, can't force you to eat, when you get your post hospitalization survey, GO TO TOWN!!  geesh

 

This is something I keep myself very aware of. There is such a thing as "leaving against medical advice." You simple begin to get ready to go, and eventually they'll bring in your release paperwork with that noted in your chart and usually why. (It was in my records from when my second daughter was born. She was lifeflighted to a NICU and they told me I had to stay in the hospital another day... my ass they were keeping me!)

 

I have been in instances where a doctor or medical person didn't understand the food thing. I have explained things with the patience of a saint. And with exasperation.

 

My biggest fear is being stuck in a hospital, or (later down the road)  a nursing home.... or a jail (not sure WHY I'd be there, but it's on my list of places to avoid :lol: ) and getting glutened left and right by well-intentioned staff and my brain starts to fritz.

 

(shudder)

 

These are my biggest fears too. I've joked with my husband that the only thing that keeps me from being a serial murderer is that if I get caught they wouldn't feed me right in prison. The fact that I faint at the sight of blood never comes up. :lol: I have an agreement with my husband about food and he knows what to do and bring me if I'm ever in the hospital. Since In N Out is closer to the hospital than home, I taught him how to order for me. B) Sad how I can trust a fast food place but I can't trust a hospital to feed me.

1

Share this post


Link to post
Share on other sites

The

 

When the nursing staff was trying to calm me down the RN on duty all but snickered at me when I said I could not eat the eggs on the menu because they had gluten and probably  soy in them  ( powdered eggs because institutions  are not allowed to have raw eggs on the premises)

 

 

The RN should be in deep trouble as well as the "Dietitian" or whoever was supposed to give your chart to the dietitian.

1

Share this post


Link to post
Share on other sites

Thanks flowerqueen ,, yes the surgery went very well :)

Glad to hear it!

0

Share this post


Link to post
Share on other sites

I wonder if they would bring a peanut allergic person a PBJ sandwich and tell them they had to eat it. Idiots!

1

Share this post


Link to post
Share on other sites

I wonder if they would bring a peanut allergic person a PBJ sandwich and tell them they had to eat it. Idiots!

 

 

good (and frightening ) point, dear barty.

0

Share this post


Link to post
Share on other sites

Wow. :blink: I'm glad the surgery went well and you escaped the attempted poisoning.

0

Share this post


Link to post
Share on other sites

Last Thursday I had surgery to repair an abdominal hernia. It was supposed to be a one day surgery.  I knew there may be a chance I would have to stay over night and though nothing of it ( I had planed on having my daughter bring me food from home)

 

Well the best laid plans    <_<  Things did not work out as planned and it was a dietary nightmare .  I ended up staying over night and because my surgeon ordered  a diabetic diet my daughter was not allow to bring me in anything to eat .

 

Long story short : the staff told me I had to eat something before I could leave . The ONLY thing and I do mean only thing on the menu even close to something I could even risk  eating  that they would allow me to order( because of the diabetic diet) was cream of rice . So I ordered it . The girl brought it and said" here is your cream of wheat"  . Seriously  I mean SERIOUSLY ,,, ,MY Chart said celiac right on it , I told the person that took my order I was celiac and they bring me CREAM OF WHEAT !!!!!!! They may just as well served me rat poison !!! I lost it !!!!!!!!!!! 

 

When the nursing staff was trying to calm me down the RN on duty all but snickered at me when I said I could not eat the eggs on the menu because they had gluten and probably  soy in them  ( powdered eggs because institutions  are not allowed to have raw eggs on the premises)

 

The Dietitian finally  came up to talk to me and offered to go to the store to buy me what ever I wanted . Not that easy .

 

She asked me what I eat at home so they could fix it for me . Not that easy .

 

Finally my  surgeon    comes in to release  me ,  the nurses  and I fill him in on whats going on and   he writes an order so my daughter can bring me food from home . So I can go home . Easy

 

Having worked in hospitals and having to deal with complaints at times:

 

I would suggest you write a nice, calm and concise letter.  I suggest you google the hospital or call and get the actual name of these people you will send the letter to (In separate envelopes)-   The hospital attorney (usually one on staff of a large hospital or group of hospitals), head of dietary, head of food service, head of nursing, hospital CEO, Chief of Staff, Quality Assurance Committee head, your doctor a copy so he is aware next time to write an order for outside food, and a patient advocate if they have that. 

 

Just give them the facts - a brief description of Celiac and maybe a link like this:  http://www.cureceliacdisease.org/medical-professionals/guide/treatment  Maybe copy it and attach.  Highlight the line about even a crumb.   Then a point by point run down of what happened with names if you know any of them.  A letter like that should scare the pants off them.  By sending it to all of them, you are sure to get one who wants it looked into.

3

Share this post


Link to post
Share on other sites

That's really unfortunate.  I work in a hospital and my daughter is celiac.  My hospital (Canada) has many gluten-free options and honours all dietary concerns - even those that aren't medical. Sorry you had to go through that.

0

Share this post


Link to post
Share on other sites

Having worked in hospitals and having to deal with complaints at times:

 

I would suggest you write a nice, calm and concise letter.  I suggest you google the hospital or call and get the actual name of these people you will send the letter to (In separate envelopes)-   The hospital attorney (usually one on staff of a large hospital or group of hospitals), head of dietary, head of food service, head of nursing, hospital CEO, Chief of Staff, Quality Assurance Committee head, your doctor a copy so he is aware next time to write an order for outside food, and a patient advocate if they have that. 

 

Just give them the facts - a brief description of Celiac and maybe a link like this:  http://www.cureceliacdisease.org/medical-professionals/guide/treatment  Maybe copy it and attach.  Highlight the line about even a crumb.   Then a point by point run down of what happened with names if you know any of them.  A letter like that should scare the pants off them.  By sending it to all of them, you are sure to get one who wants it looked into.

Thanks for the link and I know you are right , a calm ,concise letter will get better results . I just get sooooooooo very frustrated this is my health they  were messing with. The very people that are there to help me are actually doing harm . I have worked very very hard to regain my health and their ignorance  puts  me at risk

0

Share this post


Link to post
Share on other sites

Thanks for the link and I know you are right , a calm ,concise letter will get better results . I just get sooooooooo very frustrated this is my health they  were messing with. The very people that are there to help me are actually doing harm . I have worked very very hard to regain my health and their ignorance  puts  me at risk

 

 

Write 2 letters.  First write the one where you tell them what f%&*ing idiots they are and accuse them of trying to murder you.  Then write and send the calmer one.

 

  I should have said that you need to put that you would like a response to your complaint of their serious medical negligence. If you don't hear a response within a week or 10 days, I would write back and cc an "attorney".  You can make up one if you want - Karen G, attorney at law for example.  :D

0

Share this post


Link to post
Share on other sites

Write 2 letters.  First write the one where you tell them what f%&*ing idiots they are and accuse them of trying to murder you.  Then write and send the calmer one.

 

  I should have said that you need to put that you would like a response to your complaint of their serious medical negligence. If you don't hear a response within a week or 10 days, I would write back and cc an "attorney".  You can make up one if you want - Karen G, attorney at law for example.  :D

 

 

Excellent advice!!!

and I second this idea.

Write the one where you tear them a new one first, just for you, then shred it.

 

 

 

I have complained to a hospital before about an ER doctor who gave me the very medication I am not supposed to have (after

I repeated it twice to the nurse) and was surprised to receive a response from the head of the ER staff.

 

He blamed the doctor's incompetence on his "English as a second language", which was a cop-out, but at least I got an answer.

 

Let us know what happens!

0

Share this post


Link to post
Share on other sites

This is something I keep myself very aware of. There is such a thing as "leaving against medical advice." You simple begin to get ready to go, and eventually they'll bring in your release paperwork with that noted in your chart and usually why. (It was in my records from when my second daughter was born. She was lifeflighted to a NICU and they told me I had to stay in the hospital another day... my ass they were keeping me!)

 

I have been in instances where a doctor or medical person didn't understand the food thing. I have explained things with the patience of a saint. And with exasperation.

 

 

These are my biggest fears too. I've joked with my husband that the only thing that keeps me from being a serial murderer is that if I get caught they wouldn't feed me right in prison. The fact that I faint at the sight of blood never comes up. :lol: I have an agreement with my husband about food and he knows what to do and bring me if I'm ever in the hospital. Since In N Out is closer to the hospital than home, I taught him how to order for me. B) Sad how I can trust a fast food place but I can't trust a hospital to feed me.

You can leave on your own , but you have to be careful!! My friend did that , they did not sign the release papers, and her ins. would not pay for it. So be very careful!! alot of times just begging the surgeon will work better than just packing up and leaving.

0

Share this post


Link to post
Share on other sites

You can leave on your own , but you have to be careful!! My friend did that , they did not sign the release papers, and her ins. would not pay for it. So be very careful!! alot of times just begging the surgeon will work better than just packing up and leaving.

 

Yeah, this can be a problem with insurance. Usually it is more likely to be an issue if you have some sort of complication, since doctors can than say it was entirely your fault for being a moron. They even tried to scare me with this at the hospital when I was getting ready to leave. You don't tell the the mother of a not yet 1 day old infant about medical bills, not on her list of things to care about when they're loading her baby on lifeflight. Most insurance companies I have dealt with in the past (not all) are not so sleazy they would deny paying for a pre-approved surgery over the discharge papers.

0

Share this post


Link to post
Share on other sites

SO glad you're out of there! I would have lost it too!! Hope you're solidly on the mend now.

0

Share this post


Link to post
Share on other sites

Thank you for telling this story.  Now we all know one more thing to check before a hospital stay.  The possibility of not being able to get food from home would not have occurred to me before.  I'm glad that you got through it and are recovering well at home.

1

Share this post


Link to post
Share on other sites

That is horrible! I am so sorry about your bad experience! Rest well and get better :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,375
    • Total Posts
      920,572
  • Topics

  • Posts

    • https://www.facebook.com/groups/SingaporeCeliacs/
    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • Celiacs got better gluten-free. Post-war, grains became available again and the same patients got sick again. 1952 the Gluten-Free Diet is officially ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,451
    • Most Online
      1,763

    Newest Member
    Chelsealarita
    Joined