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  • Jefferson Adams
    Jefferson Adams

    Trust but Verify: "Gluten-free" Hospital Meals May Not Be Gluten-free

    Reviewed and edited by a celiac disease expert.

    Celiac.com 08/23/2010 - People following a gluten-free diet due to celiac-disease or other conditions, who are facing a hospital stay, might want to cheek with their hospital dietitian and staff to make sure that the 'gluten-free' meal they receive is, in fact, gluten-free.

    That's because, even hospitals can make mistakes. Let's face it, if they can occasionally amputate the wrong limb, remove the wrong organ, or give the wrong drugs, they can accidentally slip an item containing gluten into a gluten-free meal.

    That's exactly what happened to Don MacMillan, a 68-year old Canadian man whose recovery from gall-bladder surgery was marked by a hospital mix-up that sent him a standard meal instead of the gluten-free meal he required and requested. 

    Still weak, three days after surgery, and hungry from three days of intravenous and liquid nutrition, MacMillan was looking forward to eating his first solid food. Still, he didn’t want to take any chances.

    He was suspicious of the hospital's lunch of chicken à la king and a cookie. Fortunately for MacMillan, he was both suspicious and vocal.

    ‘You sure what I’m being fed is gluten free?’ he asked the assistant.

    She answered that it was, but MacMillan asked her to please double-check. After checking in with the kitchen, she admitted that they had made an error: the meal was not, in fact, gluten-free.

    “She told me it was OK, but I just didn’t trust her ... so I asked her to verify," MacMillan added.

    Quintin Wight, spokesman for the Ottawa chapter of the Canadian Celiac Association, said what happened to MacMillan occurs more frequently in hospitals and nursing homes than is reported.

    “I sympathize with him greatly because this is a situation that we’ve heard about on and off over many years,” said Wight.

    “I’m not sure how it arises in the hospitals because the dietitians certainly know what gluten-free food is, but it doesn’t seem to get to the kitchen staff. These are organizations that should know better," he added.

    No one needs extra dietary or immune challenges when recovering from surgery. People who plan a hospital stay, and who require and request a gluten-free meal due to celiac disease or other conditions, can do themselves a big favor by taking steps to confirm the gluten-free status before eating the meal provided.

    Rule of thumb: Just because the meal is labelled gluten-free, doesn't mean it is gluten-free. When it comes to special meals in the hospital, trust, but verify.

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    I worked at a hospital [part of the Mayo health system] for a couple of years after I was diagnosed with celiac disease and finally quit a great job in disgust. I could not get a gluten free meal there or the trauma hospital [also associated with Mayo] that is 30 miles away, still can't. Even the hospital dietitian told me that she "couldn't help me, my diet was way too complicated." There is NO excuse for a hospital to not provide gluten free meals when I can safely eat at Outback steakhouse. The waitresses there know more than medical staff!

    Christa, You are very right about that! I feel bad for you. Hospitals should do more than they are doing.

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    Definitely ask, ask, ask & ask again! My stay at a local hospital (NS-F) in Georgia was wonderful when I had my daughter 18 months ago-I had different dietitians every other day. My vigilance paid off;I kept getting gluten-free/CF items included with my plate when we went over each meal individually. One day I just gave up after I sent the meal back twice-"plain" was not an acceptable word-the grits had butter in them, and someone kept on giving me milk with my meal (I requested Silk-which was on the menu). Praise the Lord I had wonderful staff and family support

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    Granted, a good number of hospitals don't have the slightest idea on how to feed a celiac. I would say it's expected to get a "gluten free" meal that is chock full of gluten. But there's more. The problem here is cross-contamination issues. Even the best dietitian and kitchen typically can't handle sensitive celiacs. The room for error is just too great, especially when you are dealing with multiple special meal requests of all sorts. I have been in the hospital and have been glutened due to cross-contamination (the food was naturally gluten free). My doctor and I had met with the RD (she seemed to be very Celiac knowledgeable) and plannd a gluten free menu, complete with my own toaster and gluten free meals. There were still some mistakes (did not eat) despite everyone's best efforts. Remember, unless the RD is going to work in the kitchen and plate your meal (unlikely), you are relying on lay dietary staff to do it. In my opinion, hospitals cannot handle gluten free. If you are a "sensitive" celiac, or just don't want to worry about possible intestinal damage even if asymptomatic, bring your OWN food. Also, as stated by someone else, always have an emergency food bag for a sudden hospital trip. ERs and Observation units cannot typically feed you. The only time I felt safe eating hospital food was the gluten free frozen meal they microwaved for me. Beware in hospitals is all I can say. There are the odd hospitals who seem pretty decent (Regina, SK, Canada), but most are simply unable to handle the most sensitive of us due to the nature of hospital kitchens.

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    How would you feel if the hospital and the doctors could care less about celiac people. I went into the ER for trouble breathing. It took eight hours before the doctor came into see me. Before she did, the nurse wanted to give me meds. I asked her if they are gluten free. She did not know what I was talking about. The doctor finally came in and told me it was my responsibility to know what meds I am allergic to. And then she told me that the celiac disease is only food restricted, therefore that the meds do not contain gluten. This hospital is in United States and in California and I have not met one doctor that is knowledgeable or they could care less. Since I had to do this all alone with this disease; the doctors tell me that I am cured. Scary is not the word for it. What happens when I go into the hospital and cannot speak. I already had two strokes. I believe if I have another one, I rather stay home and die.

     

    Thank you for your time,

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    I was in the Buffalo VA Hospital for ulcerative colitis (which came about as a result of me taking dapsone for my DH) I lost 35 pounds in 5 weeks. After being on an IV for 5 days, the first meal they brought me was a pork chop with mashed potatoes and GRAVY and a slice of WHITE BREAD. The card on my tray stated "LOW GLUTEN DIET". I couldn't believe it. The very thing that put me in the hospital to begin with... (accidently glutened by ranch salad dressing which led to a bad outbreak of DH, thus the dapsone & reaction leading to the colitis and bleeding. My immune system was on fire fighting my own body.) My wife brought in all my food and snacks as I couldn't trust the hospital. It is supposed to be a NO gluten diet. I just can;t figure it out when a hospital should be a safe place where you go to get well!

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    I think this should be forwarded to every hospital out there. Maybe if they read these comments they will understand the negative effect they have on us. Unfortunately, the reality is hospitals are only really interested in the bottom line - the money, not the true safety and happiness of their patients. Until there is a lawsuit over this, probably nothing will change.

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    Guest Lesley Carol Prince

    Posted

    The above comments confirm my experience with the poor and/or faulty provision of gluten free hospital food. Keep advocating for yourself and others, send back those trays, speak with dietitians.

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    having done my internship at a local prominent hospital I was appalled to learn that the director of the hospital cafeteria knew NOTHING of gluten issues much less had any dietary knowledge whatsoever. You would think a hospital would require their cafe staff to offer healthy food that complied with a wide array of dietary issues. I made some comments to the hospital director but nothing changed in the year I was there.

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    Great article, yet another aspect of being gluten free I had not considered. My wife, who is gluten free, has pretty much taken to bringing her own food with here, wherever she goes. Thankfully we have not had to deal with a hospital stay!

    When I had a hospital stay for surgery, I planned ahead and made meals and froze them. The hospital called in their kitchen staff to be sure everyone understood my needs but the first meal turned out questionable and in the end the dietitian recommended my family bring in my frozen meals for the nurses to 'nuke' for me. Better safe than sorry. My nephew works in the kitchen of a hospital and understands the need for dedicated gluten-free cooking utensils (due to me) but still finds him arguing with staff & bosses who routinely violate this rule.

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  • About Me

    Jefferson Adams earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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