Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Unexpected Hospital Stay And Dietary Nightmare

cahill

By cahill
in Coping with Celiac Disease

Recommended Posts

cahill Collaborator
cahill
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

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!

jerseyangel Proficient
jerseyangel
Posted

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

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

frieze Community Regular
frieze
Posted

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

flowerqueen Community Regular
flowerqueen
Posted

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.

cahill Collaborator
cahill
Posted
  • Author

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  ^_^

cahill Collaborator
cahill
Posted
  • Author

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 :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cahill Collaborator
cahill
Posted
  • Author

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 .

cahill Collaborator
cahill
Posted
  • Author

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 .

Adalaide Mentor
Adalaide
Posted

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.

Fire Fairy Enthusiast
Fire Fairy
Posted

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.

flowerqueen Community Regular
flowerqueen
Posted

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

Glad to hear it!

bartfull Rising Star
bartfull
Posted

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

IrishHeart Veteran
IrishHeart
Posted

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.

nvsmom Community Regular
nvsmom
Posted

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

kareng Grand Master
kareng
Posted

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:  Open Original Shared Link  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.

GwenO Apprentice
GwenO
Posted

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.

cahill Collaborator
cahill
Posted
  • Author

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:  Open Original Shared Link  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

kareng Grand Master
kareng
Posted

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

IrishHeart Veteran
IrishHeart
Posted

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!

w8in4dave Community Regular
w8in4dave
Posted

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.

Adalaide Mentor
Adalaide
Posted

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.

GlutenStinks15 Explorer
GlutenStinks15
Posted

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

dilettantesteph Collaborator
dilettantesteph
Posted

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.

eblue Apprentice
eblue
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    2. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    4. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
    5. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      It could be a fructan intolerance? How do you do with dates? https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,354
    • Most Online (within 30 mins)
      7,748
    Gracieruizzz
    Newest Member
    Gracieruizzz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.