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  • Sarah  Curcio
    Sarah  Curcio

    Celiac Disease and Hospital Care

      Journal of Gluten Sensitivity Summer 2019 Issue.


    Caption: Hospital food. Image: CC BY 2.0--BrownGuacamole

    Celiac.com 07/11/2019 - If you have ever had to spend time in a hospital, whether it was for an overnight care or an emergency visit, and you have celiac disease, then you know how difficult it can be.

    Hospital cafeterias are not equipped to handle cross-contamination on a whim’s notice. A nutritionist or dietitian needs at least a week of advanced notice before you arrive to notify and prepare their chefs and kitchen staff with appropriate directions. That way, you will not have to be fearful of cross-contamination to your breakfast, lunch, or dinner. Plus, you can even work with them to be able to bring your own prepared food with you and store it appropriately in their pantry or refrigerator.

    However, if you are going in for testing or a procedure this is most likely adding more stress to your already nerve-wracked mind. There really should be a better way for hospitals to have safe options available automatically, especially since celiac disease diagnosis has been on the rise over the last decade, if not longer.
     
    Having gluten-free options such as fresh fruit, vegetables, eggs, and nuts should be the easiest food items to keep in stock. Hospitals really need to think outside the box of traditional foods such as gluten/wheat, corn, and soy, especially in today’s world. 

    Celiac disease is an autoimmune disease that needs to be taken care of with special consideration in various venues from your own home, to restaurants, grocery stores, work, college, hospitals, and more. Having gluten-free menus, accommodations at business meetings, being able to have a dorm room to yourself, and more are all just a part of the Americans with Disabilities Act.

    So, if you thought that sharing a non-gluten free kitchen with your loved ones was a hard experience, it really is a piece of cake in comparison to a hospital stay. 

    References:


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    I have been hospitalized many times and it has always been a complication with gluten-free food. I have had Drs even say it's okay just eat the food it'll only give you a little stomach ache. Really disgusting to me

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    I stayed in a major hospital for a week and was offered a “Gluten Friendly Menu”!? They were giving me a potentially gluten-free broth in what appeared to be an older porous plastic bowl which I refused. I lost more weight than I should have during my stay. I had to rely on others to bring me safe food. Once I was home, I tried repeatedly to contact the head of food services but got nowhere. This is a dangerous way to take care of patients.

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    I work in a hospital, and it is difficult to get gluten-free foods in the cafeteria.  Foods are not labeled with allergens or nutritional content.  Very frustrating!

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    Every single procedure and surgery since 2007 (I've actually lost count) has required me to bring my own gluten-free food or cookies for recovery.  Once I had to spend the night and they offered me a gluten-free breakfast, but I did not trust it and only ate what was sealed from the original company, like yogurt. 

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    It is not getting any better in the Netherlands. I  had a heart attack and they took me to the ER. No gluten- and lactosefree food! Nothing to eat at all! They told me I had to order my special diet one week in advance!!! As if I knew when I would get a heart attack!  In the morning they send me home because they had nothing to eat for me. I am also insuline dependent, so the poor taxi driver could have a huge problem while taking me home.

     

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    1 hour ago, Elisabeth Gerritsen said:

    It is not getting any better in the Netherlands. I  had a heart attack and they took me to the ER. No gluten- and lactosefree food! Nothing to eat at all! They told me I had to order my special diet one week in advance!!! As if I knew when I would get a heart attack!  In the morning they send me home because they had nothing to eat for me. I am also insuline dependent, so the poor taxi driver could have a huge problem while taking me home.

     

    "They told me I had to order my special diet one week in advance!!! As if I knew when I would get a heart attack!"

    Wow. It never occurred to me until I joined these forums that people with a medical condition could not get safe food in hospitals. I read your stories and it is sad, frustrating, and frightening.

    Thank you for sharing your stories to help others like me. I enjoy how you tell the story with humor and sarcastic wit. As I am sure it was painful and upsetting to go through. I hope you are doing well. 

     

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    20 hours ago, Mr. Pep'r said:

    Every single procedure and surgery since 2007 (I've actually lost count) has required me to bring my own gluten-free food or cookies for recovery.  Once I had to spend the night and they offered me a gluten-free breakfast, but I did not trust it and only ate what was sealed from the original company, like yogurt. 

    "Only ate what was sealed from the original company, like yogurt"...this seems to be the easiest way for hospitals to accommodate.  They should have a supply of sealed individual serving packets of gluten-free & nondairy foods (which is really quite easy!) such as canned tuna, chicken, sardines, packaged deli meats, olives, cheese, hard boiled eggs, rice crackers, gluten-free cereals, nondairy milks, on hand.  I cannot comprehend why health isn't top concern in a hospital.  But I've had the same experience in hospitals, and it causes a lot of stress at a time that healing should be the focus. 

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    I was a patient in a rehab hospital when I had hip replacement surgery (twice).  I gave them my information and my additional allergies.  First meal there, everything I put on my allergy list was on my plate.....go figure.....I called the kitchen.....someone came up and took my info again......no dairy.....I received during the day, yogurt, ice cream, pudding and a box of white milk!!!!  I told them they were trying to kill me!!!  My husband bought gluten-free meals for me and they were supposed to put them in the freezer labeled!!!  "Forgot!"  I was so disgusted.  Ruined the food.  When they bought it and had it prepared, it arrived with a huge piece of white bread on top of the food!  When I went to new hospital almost the same experience, but when my husband was a patient I asked to speak to the chef and in doing that, I mad e a friend and was able to find a way to have a decent gluten-free meal while he was a patient.  I do not trust anymore!!!!!!

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    I'm really nervous if I ever had the need to go to the hospital for an extended stay. Being celiac is hard enough, but I also have an egg allergy and can't have dairy due to the casein in it..that would take a lot more off the "menu". So I'm trying really hard to stay as healthy as I can.

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    7 hours ago, Guest Marie G. said:

    I was a patient in a rehab hospital when I had hip replacement surgery (twice).  I gave them my information and my additional allergies.  First meal there, everything I put on my allergy list was on my plate.....go figure.....I called the kitchen.....someone came up and took my info again......no dairy.....I received during the day, yogurt, ice cream, pudding and a box of white milk!!!!  I told them they were trying to kill me!!!  My husband bought gluten-free meals for me and they were supposed to put them in the freezer labeled!!!  "Forgot!"  I was so disgusted.  Ruined the food.  When they bought it and had it prepared, it arrived with a huge piece of white bread on top of the food!  When I went to new hospital almost the same experience, but when my husband was a patient I asked to speak to the chef and in doing that, I mad e a friend and was able to find a way to have a decent gluten-free meal while he was a patient.  I do not trust anymore!!!!!!

    Horrible, this was not a mistake, this was a "on purpose"! They just don't believe you and  they have no knowledge about celiac and dairy free!

     

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  • About Me

    Sarah Curcio is a health advocate, blogger and has a background in medical office assisting. She worked at Nutrition Treatment Center, as a Lifestyle Educator. She's also the founder and organizer, since February 2011, of Celiac and Allergy Support (www.meetup.com/allergy), which is a mutual social and self-help support group located in New Jersey.

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