Sharing A Hospital Gluten-Free Experience

[T.H.]

Just sharing a friend's hospital experience because honest to god, it was so bizarre it's hard to believe!

A celiac friend of mine just had a baby a few weeks ago with a c-section and had to stay in the hospital for a couple days. She'd heard a lot of horror stories about people's gluten free experiences in the hospital, and as she has food allergies on top of the celiac disease, she decided to bring her food and not eat the hospital food.

When she's staying there, however, they insist that they still have to bring her a meal. Okay, she thinks, insurance will pay for it anyway; her husband can eat it. No problem. So they fill out the meal order for dinner, and then breakfast. The form already has a big 'gluten free' across the top, added by the staff.

What does she get for dinner? 2 pieces of regular bread, french fries, and chicken with wheat breading on it.

My friend and her hubby took pictures of the menu slip and the meal.

The next morning, their breakfast selection comes - they'd chosen potatoes and fruit, plus added their own 'gluten free' across the bottom of the slip. The breakfast that comes is a big, gluten-filled blueberry muffin. But the potatoes they ordered are x'd out with the notation that the potatoes were not gluten free. 0.o

Once again, she takes pictures of the menu slip and the meal.

Once she'd gone home and healed up, she made an appointment with the Dietician of the hospital and one of the administrators to discuss the issue. She's showing the Dietician the pictures of the slips for the food and what was ordered and what was served and the Dietician says that the food she was served was all gluten free because the Dietician had made sure that the dishes only had whole wheat flour.

As opposed to white flour or potatoes, which are the items that the Dietician thought were prohibited on a gluten free diet. Except even with that, potatoes were still served for one of the meals anyway.

It was one of those moments where you just stare with your jaw open, waiting for the punchline, because it's hard to believe something like that could actually happen. I've know people have had this exact same type of response from people like waiters and family members, but from a Dietician? It still blows my mind.

I can't help a sort of appalled laughter at this level of ignorance in a professional. At the same time, it's probably a really good reminder of why having trustworthy health professionals can be so crucial with the management of Celiac Disease.

[mushroom]

Also a good reminder of why we need a family member or trusted advocate to supervise our nutritional intake in a hospital. This, unfortunately, is not an isolated experience

[Strawberry-Jam]

...They're going to kill someone.

Maybe someone with celiac. Probably someone with an allergy. (oh, can't have shellfish? prawns are ok, they don't have shells lol)

If I were in hospital and they tried to feed me like that, I'd rather starve. and if they gave me lip about not eating, I'd start flipping trays and throwing food

[curlyfries]

Funny, yes.....but terribly, terribly sad.

I hope your friend set her straight...in front of the administrator.

There is no excuse for a dietician to be so extremely misinformed.

[Diane-in-FL]

That is just mind-boggling that a dietician in a hospital is so woefully ignorant.

[ravenwoodglass]

The head of the hospital and the dietary dept. need to be notified about this. Send a letter with info on what is gluten free and what isn't. Glad the friend knew better than to eat anything they served. Vomiting or stomach cramps and D are no fun even if you don't have stitches to be torn.

[pricklypear1971]

Wow. Simply wow.

And they wonder why we roll our eyes when people ask if we've talked to a dietician/nutritionist about our unhealthy diets. Yes, I know they aren't all like that but there are more out there than I'm comfortable with.

What city was this on, if you don't mind me asking? I'd like to steer clear of that hospital if you know what I mean.

[mommida]

When my daughter was diagnosed the hospital dietician called and cancelled the appointment, because she knew she couldn't help us.

She said to look online, that's how we ended up here at this site.

We should have honorary dietician degrees. (I took a look at a college students dietician class test ~ and knew all the answers. Not a day in the classroom, just dealing with gluten free diet and other "allergens")

[Bubba's Mom]

When I was first DXed I was sent to the dietician from the hospital for a consultation. She knew very little about Celiac disease, or the diet requirements. She gave me a list of gluten-free processed foods that she had.

I had already done a lot of reading before I saw her, and expained that a whole foods diet was better..but had to expain to her why whole foods are better than processed crap!

In January I was hospitalized overnight(different hospital). By this time I was gluten, soy, and dairy free. The dietician came to talk to me and said "I don't know what you could safely eat from our menu". We discussed if regular flour was used in the area where veggies were cooked, and it was seperate. The veggies and fruits would be safe. Hard boiled eggs would be safe.

They had a list of cereals in mini boxes available and I told her if they carried Rice Chex, or Corn Chex, they'd be safe for a gluten-free diet. They're main stream cereals, not special order, so she said she'd see about getting them for the hospital.

Surely, I couldn't have been their first patient on a gluten-free or soy free diet?

[celiacandglutenfreehealth]

LOL - I totally agree with the honorary degrees just based on our celiac knowledge! Goes to show that we have to be fully informed, self-sufficient, and not shy about advocating for ourselves. I started out as a quiet and shy person, never wanting to say anything that might offend ... I am still polite, but have learned that I must be firm and unwavering when it comes to food issues.

[T.H.]

I hope your friend set her straight...in front of the administrator.

Oh she did, at great length and with a lot of detail, made it all as official as possible. And if that didn't work, I have a feeling she managed to make them pay attention a LOT more when she also made sure to let them know her profession: she's a lawyer.

Oh, and as to what city that was in: Tucson AZ. I don't recall which hospital, though, I'll admit (we have quite a few in Tucson and the surrounding area). I've had a few successes with some medical staff and hospitals around here, but there's been some pretty epic fails, as well.

I have another friend with MS who was prescribed five times the amount of medication she was supposed to be and she ended up taking it for over a year until it made her suicidal.

I have a friend who was in a bad car accident here where her hip was shoved out of its socket by the steering column of the car and she was left on a gurney in a hallway with no pain meds of any kind for over 24 hours as they delayed the surgery over and over and over. She couldn't get to a phone to call anyone, she couldn't get any help - it always makes me want to hurt someone when I think of it (I met her a couple years later). She did sue, but she's permanently crippled, now.

My favorite personal 'what the heck' moment was when I came in to the ER with severe chest pain (ended up as costochondritis). Had an EKG done immediately, at least, and then filled out the paperwork. One of the admitting questions was 'do you have diarrhea.' I did, as I had eaten something not so great the day before, but I knew the cause. I jotted it down anyway because I know that something like that can sometimes affect how we're absorbing meds, but I noted that it was mild, from a known cause, and did not seem related to the issue at hand.

So I get all these tests, blood, urine, the usual. The first nurse in is asking questions about the chest stuff. The second one starts asking some questions that seemed odd to me but I'm answering anyway. And when the doctor comes in, he's all set to talk to me about what the tests were saying about my painful bloody diarrhea. Somewhere along the way, the actual reason I was there just sort of disappeared and a new one took its place. Wacked.

So, yeah, moral of the story is don't get sick or injured here, I guess.

[YoloGx]

The ignorance out there is appalling. Hospitals are the worst. When my down syndrome brother with celiac was admitted after vomiting and diarrhea after having had some forbidden gluten, they put him in isolation thinking he had a bad bacterial infection. I went into the ICU and had to tell them the truth. This was I think the 4th time he'd been admitted for the same thing in one and a half years. You would think they would learn something or other. These "professionals". But in a hospital they prefer to put down wheat allergy rather than celiac... for insurance purposes. They just don't want to get it. Same deal where he is staying. He usually gets ill right after a holiday, all those treats! Just a little wheat now and then can't harm one, can it?? Not a problem if it is JUST an allergy.

Maybe we should all become dieticians!! I hear its not too hard. Sounds like the tests are easy too! Do you think we'd be listened to then??

[mushroom]

Maybe we should all become dieticians!! I hear its not too hard. Sounds like the tests are easy too! Do you think we'd be listened to then??

I sure wouldnl't listen to anything a dietician had to say

[Adalaide]

epic fail

I suppose it's my gamer side but this is my first thought whenever I read a post like this, or most of the time when I talk to "educated" people who obviously know more than me based on the fact that they have letters after their name. No other words can adequately describe how positively ignorant people can be.

[Kimbalou]

OMG!!! This story makes me angry!! I am a nurse, so this is really upsetting to me. I wonder if all the wheat sensitive and celiac patients at that hospital get all that gluten-filled food?? That dietician needs to go back to school. Did your friend tell you how the dietician responded when she told her the food WAS NOT gluten-free??

People just don't get it, I am so tired of ignorance. I think most people who don't get it just don't give a s$#&...that's what I've decided after dealing with people. I think the majority of the public looks at Celiac as a wheat allergy, that's all...nothing else. Even my nurse co-worker's ask me over and over again to tell them how I was diagnosed and what my symptoms were. I am tired of repeating myself. I hardly ever have a meal at work without being questioned about the food.

[Kimbalou]

Mushroom: not all dieticians are this ignorant. Mine was perfectly accurate with her Celiac information right after I was diagnosed

[mushroom]

I was abreacting a little from my three personal experiences with hospital dieticians. The very first hospital meal I was served after my gluten free chat with the dietician was a breakfast of bacon and scrambled eggs, with two pieces of french toast lying across the eggs (gluten free bread - NOT!) Nothing got any better. Fortunately my hubs could bring me food so I could stay out of afib After they had worked so hard to get me there in the first place, I didn't want to go back in

[frieze]

Just sharing a friend's hospital experience because honest to god, it was so bizarre it's hard to believe!

A celiac friend of mine just had a baby a few weeks ago with a c-section and had to stay in the hospital for a couple days. She'd heard a lot of horror stories about people's gluten free experiences in the hospital, and as she has food allergies on top of the celiac disease, she decided to bring her food and not eat the hospital food.

When she's staying there, however, they insist that they still have to bring her a meal. Okay, she thinks, insurance will pay for it anyway; her husband can eat it. No problem. So they fill out the meal order for dinner, and then breakfast. The form already has a big 'gluten free' across the top, added by the staff.

What does she get for dinner? 2 pieces of regular bread, french fries, and chicken with wheat breading on it.

My friend and her hubby took pictures of the menu slip and the meal.

The next morning, their breakfast selection comes - they'd chosen potatoes and fruit, plus added their own 'gluten free' across the bottom of the slip. The breakfast that comes is a big, gluten-filled blueberry muffin. But the potatoes they ordered are x'd out with the notation that the potatoes were not gluten free. 0.o

Once again, she takes pictures of the menu slip and the meal.

Once she'd gone home and healed up, she made an appointment with the Dietician of the hospital and one of the administrators to discuss the issue. She's showing the Dietician the pictures of the slips for the food and what was ordered and what was served and the Dietician says that the food she was served was all gluten free because the Dietician had made sure that the dishes only had whole wheat flour.

As opposed to white flour or potatoes, which are the items that the Dietician thought were prohibited on a gluten free diet. Except even with that, potatoes were still served for one of the meals anyway.

It was one of those moments where you just stare with your jaw open, waiting for the punchline, because it's hard to believe something like that could actually happen. I've know people have had this exact same type of response from people like waiters and family members, but from a Dietician? It still blows my mind.

I can't help a sort of appalled laughter at this level of ignorance in a professional. At the same time, it's probably a really good reminder of why having trustworthy health professionals can be so crucial with the management of Celiac Disease.

Dieticians are registered/lic, as far as I know. IF this person is actually a registered dietician he/she needs to be reported to the board of registration/licensing. It would be unethical to NOT report. There is absolutely NO reason for this gross malpractice on the part of the alledged dietician.

[xjrosie]

This stuff scares me.

It has also prompted me to consider changing my major, from computers to Dietitian. I was thinking of becoming Head Lunch Lady at a school because that is also a place that needs some major education. None of my kids can eat at school because they have no idea about gluten or cross contamination. I know a school is not some place that really needs to consider the dietary needs of all kids, but they should.

[Monklady123]

I work in a hospital and I will tell the OP that this is NOT at all unusual, sadly. The only thing I'm not afraid to eat from our cafeteria is the hard-boiled eggs.

I was in with a diabetic patient recently who kept telling me she was hungry and kept asking me to bring her some food. I checked and the nurse told me that food was on the way, it had just been ordered. (the patient had been on NPO -- "nothing by mouth" -- but that had just been taken down.) So while I was talking the guy came up from the kitchen with the food. I followed him in and the patient said to me "oh thank you! You got my food." lol.... I'd had nothing to do with it, obviously. Anyway, the kitchen guy left and we took the covers off her meal. Pancakes with syrup, orange juice, and a roll with butter. I kid you not. :blink: You can't tell me that this is what a diabetic should be eating, especially not one who has been NPO for awhile. But that's what she ordered, so that's what they brought.

We had a lunch thing a few months ago and the head of the food service told me that they would provide me with lunch, "no problem." Fortunately for me I don't trust anyone and bring my own. It was plain lettuce (everyone else had a caesar salad) with a plain veggie plate for everyone to pick from. And three types of salad dressing, none in the original bottle, just in a cruet thing with a sign saying what it was. Now I have read the ingredients list on the big bottles in the cafeteria and only one, the plain vinaigrette, is safe. And none of these looked like that vinaigrette. (which even if it did I wouldn't have eaten it since I wouldn't know for sure.)

Anyway...my long-winded way of saying that it's sad but true. I really feel sorry for those patients who do not have family to help them.

[Mom23boys]

No matter what issue you have, you have to go into the hospital/dr having educated yourself about what is going on. Mom went into a dr asking for thyroid meds (her dr died and I don't know if his practice died or what??) but the dr with all her med students around proceeded to tell them how there was nothing wrong with her thyroid and how this and that mimics thyroid issues blah blah blah. Mom looked at the students and pulled down the neck of her shirt. She said "see that scar around my neck? I've had half of my thyroid removed. There IS something wrong my my thyroid and I DO need meds." Students got an education that day and the dr went "bye bye".

I cannot tell you how many medical "professionals" write down lactose intolerance when I say "milk allergy". Even after I go into this hives, anaphylaxis, allergist confirmed, NOT LI song and dance.

[Googles]

I got diagnosed at a major north eastern hospital (world renowned). So you would think that the doctors/dieticians there would know about things. However, when the GI doc told me about my celiac diagnosis it was over the phone (and sadly 15 minutes before I was supposed to start an overnight work shift). She told me the diagnosis and that was it. Then she sent me to the dietician. The dietician had a list of gluten free foods (that was out of date- I pointed it out to her). I asked her if she could help me any more and she said she could not. I learned everything I know about celiac from this board and other on-line resources. That the dietician couldn't help me at all made me really angry. And the dismissal of the diagnosis by the GI doc since there was nothing she could do about it. Like it wasn't important since it was just changing how I eat. That it was some simple thing to avoid gluten (which we all know is not true).

[frieze]

Talked to a dietician, she pointed out that she isn't working the line where the food is put on the tray. I, in turn, pointed out that it IS her responsiblity to educate the kitchen staff to what is appropriate. Just as I am responsible for the CNAs working with me.

I THINK she got the point.

[JustNana]

OMG

I've been a Celiac for 7 weeks and am literally drop-jawed. I was about to ask my Dr for a Dietitian referral. LOL. I'll save my time and money and just keep coming here.

My daughter was telling a friend of her at work about my diagnosis. The friend said something about it being a wheat allergy. My daughter ( who has I independly researched Celiac disease and Dermatitis Hepetiformis just to be supportive) quickly set her straight. "no, Celiac is not an allergy at all. It's an autoimmune disease. Rye and Barley will do the same kind of damage."

I love that kid!!

The incompetence of so many I. The medical profession terrifies me. I'm a babyboomer and some day may be totally dependent on them for my life. God help us all.

[JustNana]

Ugh

Again my apologies for dumb typos. New iPhone...OLD fingers.

:-D