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

Hospitals Are "healthy" Places, Right? Accommodating Celiac... ?


Monklady123

Recommended Posts

Monklady123 Collaborator

Not. <_<

I'm doing a fellowship program (for chaplaincy) at a local hospital. At the end of this "semester" in mid-December there's a program for those who are finished (I'll be doing one more unit after Christmas) and a lunch. It wouldn't bother me at all to bring my own lunch. The only thing I've bought in the hospital cafeteria is a hard-boiled egg because I don't trust what I see.

But, the director of our program is not okay with me bringing my lunch. I mean, he doesn't mind the actual bringing-my-own-food part, it's just that he feels like I'll be left out. Which like I said really doesn't bother me at all.

So he called up the food service people who basically said "hmm..." Not, "oh yes of course we can accommodate that -- this is a hospital after all and we're used to different dietary needs." oy... :ph34r:

Anyway, nothing surprises me anymore but now I'm wondering how patients with celiac manage to eat safely. And I wonder how other hospitals compare to this one. If I ever need to be hospitalized it would not be this hospital (unless I have an accident while I'm at work or something) because it's nowhere near my house. But I'm almost tempted to call up the one nearest to my house and find out ahead of time! lol..

Those of you who have been in the hospital since your diagnosis, what has been your experience?


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



Celiac.com Sponsor (A8-M):



Korwyn Explorer

Explain to the floor shift supervising nurse that you have Celiac Disease (and any SERIOUS food allergies/intolerances) that create some serious health issues regarding eating food prepared in a non-safe enviornment. Ask to speak to the head of the kitchen/head cook, etc. If after talking to them, or if they won't let you or blow you off, BYOF. Or have a family member/friend bring you safe food.

The reason I say talk to the nurse is two fold: 1) The nurses are the ones who will provide most of your care. They are the ones that double check your meds, that verify you are getting the care the Dr. ordered, that basically are the ones that really will have your life in their hands; 2) The kitchen staff have to interact with the nurses routinely all day long. They are more likely to be truly responsive to the nurse than the Dr, since they have to deal with long term fallout from not listening to what the nurses say. Also the nurses will know which kitchen staff can/can't be trusted to really pay attention to dietary issues.

Nursing staff are overworked and underpaid, usually are working 10-12 hour shifts on a regular basis. If you are nice to them (the nurses) and make their job easier by having a prepared 3x5 or 5x7 index card outlining the basic of celiac disease (autoimmune disease, etc), what your bio/neuro/psych response to gluten exposure (vomiting, ataxia, D/C, brain chemistry imbalance, etc), your food issues and preparation requirements needed to keep you from getting sick, it helps them a lot. They can put a copy in your chart, and send it to the kitchen. They will not have to worry about passing the information verbally or remembering it for the next shift.

Also, using terms like brain chemistry imbalance, anemia, instead of panic attacks, depression, tired/exhaustion, etc. This help put the description into their realm of experience where they can actually note specific medical issues that will get the attention of attending nurses and doctors.

lizard00 Enthusiast

It always comes down to the people. When my daughter was born, they had a big flag on my room, so when I ordered my food, the system wouldn't even let me order anything with gluten in it, even if it could be modified. Didn't have the first problem there. The food wasn't great, but I didn't expect that. :lol:

(I might have had an unfair advantage since the Celiac support group meets at that hospital in the cafeteria...)

DonnaMM Explorer

My hospital does not offer a gluten free menu for patients they just simply black certain things out of the computer that the patient can't have. But I still don't know how comfortable that would make me. Like for example the scrambled eggs are powdered yes eggs are gluten free BUT what about the processed kind? I could see the hospital just assuming its gluten free cause the 'main ingredient' is without looking at all the ingriedents. Oh and coming from a nurse, at least on my floor talking to the nurse manager of the unit would not do anything. Not unless he/she was the one cleaning your diarrhea from the CC. Talking to the chief nursing officer and head of the kitchen might do something but I doubt it. I have had one celiac patient and he brought all his own food cause he said he still reacted to the 'gluten free' stuff. If it's not possible for your family to brin you food, I would say try and stick with the basics. Like stated before scrambled eggs, salad-no dressing unless it is in a packet and you can examine it. Vegetables are probably ok, fruit cups are probably ok, that is pretty much it

DonnaMM Explorer

I meant hard boiled eggs

Takala Enthusiast

I would not eat the food.

I only had day surgery, but I instructed my spouse not to let them give me anything. If I had to have stayed past waking up, I would have eaten food out of the emergency bag packed in the car.

I do not have a formal diagnosis, but surgery is challenging enough, without them trying to kill me otherwise.

I don't expect them to "get" it. This is the same hospital that closed their ob-gyn maternity wing this year because they thought they were not making enough money $$ on it, inspite of population growth in the area, and this medical chain expects female people now to commute great distances to the Big City branch just for that type of care, or to use the emergency room. If you're bleeding to death or car crash, maybe, basic things like nourishment, meh, I don't think so. After all, there are many more female than male celiacs. :blink: I'm sure they could do a "heart - healthy" menu. <_<

Lisa Mentor

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



Celiac.com Sponsor (A8-M):



catsmeow Contributor

I was in the hosp for 4 days following surgery last October. They didn't have any gluten free regular warm food for me, so this is the stuff that arrived on my tray everyday in various combinations; broth, yogurt, coffee, fruit cups, pudding cups, carnation instant breakfast and milk, juice, and tea. It was gross, but it was food.

mushroom Proficient

I survived on apple juice (hate it), milk, eggs, bacon (when I could wangle it), fruit (and the stuff hub brought infor me :lol: ) I have already mentioned on here about the thoughtful person in the kitchen who kept dumping french toast on my eggs :blink:

LyndaLou Newbie

I'm a nurse. My daughter has celiac and I either have it too, or serious gluten intolerance. Anyway, I would not want to be a gluten free patient in my hospital. We have an option to order a gluten free menu for patients, but I would be highly suspicious of cross-contamination issues. If I ever have to be an overnight patient in any facility, I'll have family bring food in for me.

The only things I'll buy in our hospital cafeteria are boiled eggs and baked potatoes.

sandsurfgirl Collaborator

I was in two hospitals recently (got transferred to a second one for a particular specialist.) It was a total of 10 days. Both of them did really well with gluten free food. They gave me a special allergy wristband and the computer that they used to put orders in reminded them and told them what I could have.

The food wasn't very good. Everything was pretty plain and dry. But it was safe and I didn't get glutened. They gave me a meat, a vegetable and potato or a salad with chicken or turkey on it for lunch and dinner. Breakfast was eggs, bacon or ham and fruit. I had fruit with lunch and dinner too. Towards the end of my stay I had trouble gagging down the dry food, but at least it wasn't glutened.

I was really worried about it too, but they took great care of me at both places.

Di2011 Enthusiast

I was in two hospitals recently (got transferred to a second one for a particular specialist.) It was a total of 10 days. Both of them did really well with gluten free food. They gave me a special allergy wristband and the computer that they used to put orders in reminded them and told them what I could have.

The food wasn't very good. Everything was pretty plain and dry. But it was safe and I didn't get glutened. They gave me a meat, a vegetable and potato or a salad with chicken or turkey on it for lunch and dinner. Breakfast was eggs, bacon or ham and fruit. I had fruit with lunch and dinner too. Towards the end of my stay I had trouble gagging down the dry food, but at least it wasn't glutened.

I was really worried about it too, but they took great care of me at both places.

Can you tell us what hospitals?

ravenwoodglass Mentor

Some hospitals can be pretty savvy. One I cooked at, for example, would have the eggs for the cafe line done first on a clean grill before anything else. The only problem was if we ran out and then had to order from the back kitchen. I was hired there because I had experience in cooking for people with dietary restrictions (boy do I know now how much more I had to learn!!!), but anyway food that was prepared for those with allergies had a completely seperate prep area and they were very careful. I do think that then they could likely feed me safely there but I don't know about now. It would be the doctors that would kill me. :blink::huh:

mushroom Proficient

When I was first taught to drive (defensivelly) the most instructive thing I was told was to drive like everyone out on the road is trying to kill you :o Now I act like everyone who gives me food is out to kill me, especially in hospitals and, since my last visit to the U.S., like you, I have put doctors on the out-to-kill list too!!! :lol:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,597
    • Most Online (within 30 mins)
      7,748

    JosiePosey
    Newest Member
    JosiePosey
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.