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  • Sarah  Curcio
    Sarah  Curcio

    Celiac Disease and Hospital Care

    Reviewed and edited by a celiac disease expert.

      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. 

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    When my husband went in for scheduled surgery, the  hospital delivered in a tiny refrigerator in his room so that I could fill it with gluten-free foods that the nurses could give to him if I was away from the hospital.  I also talked to the hospital pharmacist before the surgery and the dietitians.  The hospital was pretty good about gluten free options for patients, but they failed miserably in the cafeteria  (outsourced to a different company).  I brought my food in and just ordered coffee or grabbed a bag of chips from the cafeteria.  I had nurses or the pharmacy verify every pill, my husband took as they use generics which changed during his stay.  Often, I looked up medications on the gov site (e.g. pillbox) standing right next to the pharmacist.    As celiacs or NCGS, we need to educate the staff and document everything.  If needed,  file a complaint/lawsuit.  Get Congress to pass the bill, “The Gluten in Medication Disclosure Act” 2019.  

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    I would never trust any hospital around here to feed me gluten-free.  They can’t figure out low carb for a diabetic - just left dessert off the tray, still had a big bread, potatoes, fruit juice & fruit in 1 meal.  Low sodium diet meant they didn’t put salt packet on the tray.  Can’t imagine what they would do to a gluten-free meal!  

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    4 hours ago, cyclinglady said:

    When my husband went in for scheduled surgery, the  hospital delivered in a tiny refrigerator in his room so that I could fill it with gluten-free foods that the nurses could give to him if I was away from the hospital.  I also talked to the hospital pharmacist before the surgery and the dietitians.  The hospital was pretty good about gluten free options for patients, but they failed miserably in the cafeteria  (outsourced to a different company).  I brought my food in and just ordered coffee or grabbed a bag of chips from the cafeteria.  I had nurses or the pharmacy verify every pill, my husband took as they use generics which changed during his stay.  Often, I looked up medications on the gov site (e.g. pillbox) standing right next to the pharmacist.    As celiacs or NCGS, we need to educate the staff and document everything.  If needed,  file a complaint/lawsuit.  Get Congress to pass the bill, “The Gluten in Medication Disclosure Act” 2019.  

    I live in the Netherlands and we have a different judical system. You can not sue  a hospital for something like this. No way you can prove your case! But the little fridge is a good idea. Today I had to go to the new hospital and during lunctime I could get a nice gluten- and lactosefree salad in the cafeteria. They were very helpful and asked many questions about the diet. At the end I had a very tasty lunch and no complains. So I'm more optimistic now.

     

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    3 hours ago, kareng said:

    I would never trust any hospital around here to feed me gluten-free.  They can’t figure out low carb for a diabetic - just left dessert off the tray, still had a big bread, potatoes, fruit juice & fruit in 1 meal.  Low sodium diet meant they didn’t put salt packet on the tray.  Can’t imagine what they would do to a gluten-free meal!  

    Worse yet......nursing homes.  Someday, we are all going to be elderly and may need specialized care.    Anyone interested in opening the first dedicated gluten free nursing home?  

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    33 minutes ago, cyclinglady said:

    Worse yet......nursing homes.  Someday, we are all going to be elderly and may need specialized care.    Anyone interested in opening the first dedicated gluten free nursing home?  

    I'm 76 and I also fear the nursing home, where the cleaning ladies are tought to give insuline shots. My former cleaning lady told me so. So I asked her what she would do with a patient with low sugar? "Give him an extra shot insuline", was her answer!!! As if it was an aspirine! And don't ask her about gluten- and lactosefree meals, she has no clue!

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    On 7/17/2019 at 3:36 PM, Elisabeth Gerritsen said:

    I'm 76 and I also fear the nursing home, where the cleaning ladies are tought to give insuline shots. My former cleaning lady told me so. So I asked her what she would do with a patient with low sugar? "Give him an extra shot insuline", was her answer!!! As if it was an aspirine! And don't ask her about gluten- and lactosefree meals, she has no clue!

    My fear as well.. I've had several friends in rehab centers within nursing homes and talked to the nurses there and they had no clue what would be gluten free or not on their menu.   My last stay in the hospital after they brought me several meals with gluten containing bread, gravy, toast crumbs on the eggs.  My doctor told them I would only be eating things that were in sealed containers from the manufacturer.  I had yogurt, fruit cups, milk, cereal (they had rice chex believe it or not) and pudding.  He had put a sign on my door that I was not aware of that said All food and medication MUST BE GLUTEN FREE NO EXCEPTIONS with his name at the bottom.. they ignored it     scary place to be

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    That was great, I wish they did that here too.  But to make my case more complicated: I am lactose intolerant too, so  there is hardly anything suitable for me you can buy! And I have nobody who can cook for me. And as I am a diabetic, I can not take insuline unless I eat straight after the shot. I think I will move to the USA;)

     

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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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