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

Overnight Hospital Stay

behr08

Recommended Posts

behr08 Rookie
behr08
Posted

Hey everyone!  Hope this is the right board to post to.  

I have an upcoming surgery (partial thyroidectomy) at the Celeveland Clinic (Marymount).  Has anyone stayed there?  Or have any overnight hospital experience since being diagnosed?

Aside from gluten-free I will also need a dairy free diet.  Should I plan to pack my own food, or are they pretty good about this stuff and offering a decent selection? ... And will they allow me to eat a packed lunch if I bring one (providing I'm not on liquids)? 

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

Celiac.com Sponsor (A8-M):


Xiao Bai Rookie
Xiao Bai
Posted

Hospitals are notorious for glutening their patients.  It has happened to me several times.  The most recent was two years ago.  I went to a very high-end hospital for an appendectomy.  They sent a nutritionist to talk with me for an hour, put a special bracelet on me so all the staff knew I had celiac.  But the food was full of gluten.  Soup with flour as a thickener, etc.  The problem is that there is a serious disconnect between the nutrition specialists and the actual kitchen staff, who in the part of the world where I live, nobody has heard of gluten or celiac.  If it is too inconvenient t take your own food, I advise eating ony plain foods - hard-boiled eggs, raw vegetables and fruit with no sauce,a plain baked potato if you can get it, or otherwise plain white rice, though even that can be iffy.

Any future hospital visits for me will be viewed as opportunities to lose weight fast.

Judy3 Contributor
Judy3
Posted

I agree totally, the last time I was hospitalized I had the same experience nutritionist, band on wrist, doctor wrote in large letters on my door.... still they brought me food with gluten.  I refused to eat unless it was something with a manufacturers cap on it  (milk, pudding, yogurt...)  or fresh fruit that I made them wash in my bathroom.    My doctor was livid that they did this to me.   Potatoes with gravy with a roll on top!!    In a hospital   wow   If I ever need to be hospitalized again I will be more scared of eating than why I'm there.   

Ennis-TX Grand Master
Ennis-TX
Posted

I actually have red medical dog tags with my medical info, allergies, emergency contact, and AI issues on them, and my emergency contacts know where I keep emergency food bars and shakes to bring if I end up in the hospital. I have MRM Meal replacement which is a low carb vegan protein meal replacement, ANd while not the best tasting I have a mixed stash of Julian Bakery Paleo and peagan protein bars, 2-3 carbs each grain free, very low sugar bars.   I also keep stashes of Miracle noodle Meals Ready to Eat stashed in my fridge.   These are all low carb emergency meals in case something happen I have options for foods that will not cause me issues and I can have ready to go right out the package.

cyclinglady Grand Master
cyclinglady
Posted

Every hospital is different, but I have experienced gluten free mis-haps personally.  In the future, I am going to bring my own gluten-free food and access to the internet (check medications etc.) and post a big note that states if you do not take my health insurance and I am not coding, then get out of my room!  Always ask to see your chart.   Mistakes are stupidly made and you have to be your own health advocate.  Sad but true!  Be prepared!  

behr08 Rookie
behr08
Posted
  • Author
2 minutes ago, cyclinglady said:

Every hospital is different, but I have experienced gluten free mis-haps personally.  In the future, I am going to bring my own gluten-free food and access to the internet (check medications etc.) and post a big note that states if you do not take my health insurance and I am not coding, then get out of my room!  Always ask to see your chart.   Mistakes are stupidly made and you have to be your own health advocate.  Sad but true!  Be prepared!  

Thanks everyone!  Very helpful!  I will be sure to pack and order safe foods.  The medications is another big worry of mine.  I just pray they take me seriously and understand.  I will be sure to question anything and everything I have to take orally, but I worry about surgery too.  

 

Thanks again! 

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, behr08 said:

Thanks everyone!  Very helpful!  I will be sure to pack and order safe foods.  The medications is another big worry of mine.  I just pray they take me seriously and understand.  I will be sure to question anything and everything I have to take orally, but I worry about surgery too.  

 

Thanks again! 

Oh, have a copy of your celiac test results?  Bring those too in case anyone questions your celiac diagnosis.  I am serious about checking your chart (read it) and noting celiac disease on that eraser board so often found in patient rooms.  Bring a eraser board marker!  Talk to all your doctors, nurses and ask even for a dietician consult (though frankly I have met some in-hospital stupid ones.....).  

Me:

"I can not eat this food.  I just had gallbladder surgery late last night (on an out-of-state business trip).  Please bring me a liquid diet."

Nurses:  "Doctor said you must eat before we discharge you." 

Me: "I get it.  But for months, I had serious pain when I ate.  Even when I last ate,  the pain was severe.  Let's test with a liquid  diet first."

Nurses: "You must eat this."

Me:  "Call the dietician."

Dietician: "Doctor said you must eat this.  It is in your chart!" 

Me: "Let me see the chart!"

Dietician and Nurses: "Chart says progress to a regular diet. Oh......progress.  We will bring you a liquid diet to start."

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Doctors:  Because you were found unconscious on your bathroom floor, had vomited, had a nose bleed (found in a pool of blood), had/have back pain so that you could not get up, had very low blood pressure,  and an a slightly unusual EKG, we are sending you for a stress test.  

Me:  A stress test?  My back is killing me.  I am a runner, but I do not think I can run on a treadmill.

Doctors: This is nuclear.  You just lay on a gurney and then we scan your heart.  

Me: No.

Doctors (to my family...my kid is there):  if you were my Auntie, I would do this test!

Me (after my family freaks):  okay.

Test Room Nurses and Doctors:  We will feed you a nice sandwich while waiting for results.  Coffee or Coke (caffeine) helps clear the medication so you do not have a headache.  

Me:  I have celiac disease and must be gluten free.  Can someone run to the kitchen?

Nurses/Staff: No. 

Test Results....Perfect.  I am starving, but okay.  I drank some black coffee.   I am good to go for another 50 years.  No build up.

One week later following up with my PCP:

Doctor:  Let's bring up your hospital chart.  Wow!  You had an x-ray.  You fractured two vertebrae.  Didn't anyone discuss this with you as a source of your back pain?  

Me:  No.  They just saw a middle-aged woman who might have had an MI (heart attack).  

Doctor: Your fractures might have been a result of osteoporosis due to celiac disease.  Let's get a bone scan.  

Moral of the story?  Be your own health advocate.  Question everything and if you can not, designate a trusted family member or friend to fight for your rights!  

Oh, the passing out thing?   It happens.  Often.  Not related to celiac disease, but Mast Cells gone wild thing.  Usually, I can get off the floor.  ?

behr08 Rookie
behr08
Posted
  • Author

Wow, I'm so sorry you dealt with that.  I will definitely take a copy of my results.  

cyclinglady Grand Master
cyclinglady
Posted

Not meant to scare, but to educate.  ?

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.