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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Unexpected Hospital Stay And Dietary Nightmare
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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

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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!

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

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

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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

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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.

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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  ^_^

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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 :)

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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 .

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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 .

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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.

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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.

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

Glad to hear it!

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

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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.

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

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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.

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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.

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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

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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

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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!

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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.

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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.

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

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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.

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

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