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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.