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

Hospital Frustration


minton

Recommended Posts

minton Contributor

Any of you ever go to the hospital for long terms stays and get fed gluten?

I went to the hospital yesterday and ended up calling up their nutritionist only to find out she was clueless. They sent me breaded chicked with garlic toast! They said I had a hypoglycemia attack and wanted to up my carb intake with glutenny products like bread and pasta. Anyone else have to informa dietician or hospital and get frustrated?


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



Celiac.com Sponsor (A8-M):



Juliebove Rising Star
Any of you ever go to the hospital for long terms stays and get fed gluten?

I went to the hospital yesterday and ended up calling up their nutritionist only to find out she was clueless. They sent me breaded chicked with garlic toast! They said I had a hypoglycemia attack and wanted to up my carb intake with glutenny products like bread and pasta. Anyone else have to informa dietician or hospital and get frustrated?

Gluten is not an issue for me, but I did request vegetarian meals when I had my daughter. The meals always came with meat on them. They would then say they would fix it, and all I would get was a pathetic grilled cheese sandwich on cheap white bread that was totally soggy and inedible by the time I got it. Luckily I had packed plenty of food with me and had access to a refrigerator. I brought cheese, carrots, celery and snack food. This was before I knew of my food allergies.

When my husband was in the hospital last year (different hospital), he was offered two choices of meals. He has no food issues. But both choices appeared to be gluten-free.

At the time, my daughter could not have gluten and we were able to dine in the cafeteria. Granted, she often just had a bag of chips, salad and fruit, but there was food available that she could eat. I realize though that the cafeteria food is not necessarily what the patients might get.

These days if I had to go into the hospital, I would for sure pack some food if I were able to.

Ms. Skinny Chic Explorer
Gluten is not an issue for me, but I did request vegetarian meals when I had my daughter. The meals always came with meat on them. They would then say they would fix it, and all I would get was a pathetic grilled cheese sandwich on cheap white bread that was totally soggy and inedible by the time I got it. Luckily I had packed plenty of food with me and had access to a refrigerator. I brought cheese, carrots, celery and snack food. This was before I knew of my food allergies.

When my husband was in the hospital last year (different hospital), he was offered two choices of meals. He has no food issues. But both choices appeared to be gluten-free.

At the time, my daughter could not have gluten and we were able to dine in the cafeteria. Granted, she often just had a bag of chips, salad and fruit, but there was food available that she could eat. I realize though that the cafeteria food is not necessarily what the patients might get.

These days if I had to go into the hospital, I would for sure pack some food if I were able to.

I went to the hospital one time and the staff kept bringing meals containing gluten.

They forced me to eat the same things the entire week ...

I will never go to the hospital again without my own tasty meal plan..

neesee Apprentice

I didn't have any trouble at all. The dietary department sent someone out to buy gluten-free products just for me so they would be fresh. They don't see a lot of celiac patients, so they have to stock up when they get one. Everything they served me was perfect. They also took measures to protect me from cross contamination. I was very pleased.

neesee

Ms. Skinny Chic Explorer
I didn't have any trouble at all. The dietary department sent someone out to buy gluten-free products just for me so they would be fresh. They don't see a lot of celiac patients, so they have to stock up when they get one. Everything they served me was perfect. They also took measures to protect me from cross contamination. I was very pleased.

neesee

Lucky you... Have you played the lottery lately?? The odds seem in your favor.

AnneM Apprentice

I was just in the hospital a month ago, I told my nurse i had celiac disease she said..."what's that"..i about fainted. I explained it to her the easiest possible way.

My doctor had me on the burn unit floor for better one on one care, and my nurse said, " this is the burn unit, we take care of burn patients not celiac patients" good thing i was in pain or i would have laughed! She STILL didn't understand.

In that hospital you call and tell them what you want it's like restaurant style, there were so few choices that i could eat, it was unreal. I ate a hamburger patty, fruit, scrambled eggs, grilled chicken and vegetables, cottage cheese, sherbert, jello of course (ick), and that was about all i could possibly eat. I was terrified to eat the food, and it shouldn't be that way.

Is anyone else terrified of the future? I wonder what will happen if i am ever put in a nursing home or something, how is that going to be?? Will there be someone who actually cares and watches out for cross contamination? I keep thinking about this and it sure does make me wonder. :unsure:

Next time i am in the hospital i will think of taking my own food.

home-based-mom Contributor
I was terrified to eat the food, and it shouldn't be that way.

Is anyone else terrified of the future? I wonder what will happen if i am ever put in a nursing home or something, how is that going to be?? Will there be someone who actually cares and watches out for cross contamination? I keep thinking about this and it sure does make me wonder. :unsure:

Actually, the thought of being in a hospital, retirement facility, or nursing home borders on terrifying. I still am almost in jaw-dropping disbelief at how ignorant so many members of the medical community and food service industry can be. When the two groups are combined in one place such as a hospital or nursing home, it almost becomes an early death for the person who has nowhere else to go.

My mom spent the last two years of her life in a very nice retirement facility. Meals and housekeeping were provided, but otherwise the residents were on their own. Many were still driving, including my mom when she first moved there. The recipes were definitely NOT designed for healthy living, especially for older digestive systems. They were too fatty, too salty, and too spicy. There were few choices at meal time. The only concessions were artificial sweetener for coffee and tea, and sugar-free desserts. NO other dietary restrictions were even considered. The breads were baked in-house. There would be no possible way for a celiac to stay alive. If a very nice place can't do better than that, run-of-the-mill places won't do better, either.

Scary? You betcha. The older I get, the scarier it gets.


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



Celiac.com Sponsor (A8-M):



shan Contributor

When my son was in hospital, every breakfast came with bread on the tray, and if i complained, they took the bread off - useless coz everything was covered in crumbs. For the main meal EVERY SINGLE DAY FOR A WHOLE MONTH he had the same - rosat chicken, rice and baby carrots.

My daughter, straight after her biopsy, and she was so bad they said start diet NOW, they gave her a sandwhich and a cake to make sure her insides didn't get damaged from the biopsy. I said, we were told she should be gluten free, do you have anything for her? They asked me what is gluten and i am sure a little bit of bread won't harm her... I gave it to her (we hadn't yet started the diet) otherwise we wouldnt have been discharged!!

If my daughter was ever hospitalized, i would bring everything from home. I wouldnt trust a hospital for anything in the world!!

hawaiimama Apprentice

When my DD was born, I didn't get fed at all. She was born at 3 in the morning and we left at 8:30 pm and I didn't receive a single piece of food. Great way to treat a new nursing mother. DH went out and bought me food so I wasn't hungry but I still felt rather neglected.

mftnchn Explorer

Goodness! I hadn't thought of this. I think it might be wise to have an emergency plan in writing for food including recipes and detailed instructions. My DH doesn't cook at all. If I was too sick to do my own, I'd be up a creek. Friends might be willing but not understand the issues.

ladywinger Newbie

I have to have treatments every four weeks at a hospital here, the dietition and staff are well informed (now). I am there for about 4 hours which always is either at breakfast or lunch time. The meal for my first treatment day did not go well, gluten was everywhere. Fortunately the nurses understood and had gluten-free yogurt that I was able to eat.

The hospital were I go sends out a questionaire after each visit. I filled it out and when it came to the questions about the food service....I politely informed them that I had requested a gluten-free breakfast but what was sent was not. From every visit thereafter, whether breakfast or lunch, has been perfect. Oh, on the next questionaire, I wrote a very nice note in the comments section about how well the food service was tending to my gluten-free meals.

I suggest you call your hospital and talk to the dietition. If ever (hopefully not) you are hospitalized, request that the dietition comes to your room or calls your room to discuss your meals. Your hospital wants to please all of their patients. Your doctor also should put, gluten-free meals on his hospital orders.

Now, like the rest of you.....I am very concerned that if I ever have to go to a nursing home or assisted living facility...."will they be as

concerned in preparing gluten-free meals?"

minton Contributor

Excuse me for asking, what does DH and DD stand for?

Mother of Jibril Enthusiast
Excuse me for asking, what does DH and DD stand for?

DH = dear husband (unless you're talking about dermatitis herpitformis)

DD = dear daughter

ladywinger Newbie

minton, thanks for asking the question of DH and DD....I was wondering myself.

I knew what DH was in some post when referring to dermatitis herpitformis.

I have seen the D put in front of H, D, S before and could not figure out what the

extra D was for. :o;)

minton Contributor
minton, thanks for asking the question of DH and DD....I was wondering myself.

I knew what DH was in some post when referring to dermatitis herpitformis.

I have seen the D put in front of H, D, S before and could not figure out what the

extra D was for. :o;)

haha i thought the D in front stood for DIAGNOSED haha well that's pretty cool. Maybe I should start typinf DF for Dear Fiance since we are thinking he may be a celiac as well.

Archived

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

  • 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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,211
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.