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


Hospital meals may not be gluten-free

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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22 Responses:

 
James
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said this on
23 Aug 2010 10:23:09 AM PST
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!

 
Shay Kell
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said this on
15 Sep 2010 1:04:46 PM PST
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.

 
Moose
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said this on
23 Aug 2010 10:55:28 AM PST
When I was in the hospital for abdominal surgery, they knew I had a gluten allergy but yet, they could not tell me if any of the medications they were planning to give me were gluten free.

My first meal after surgery consisted of toast and cream of wheat.

I checked myself out of the hospital immediately.

 
Lynda
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said this on
23 Aug 2010 8:15:00 PM PST
Last I checked, which was 2 days ago as I am writing an article for our Chapter newsletter, in Canada there are only 6 medications that are listed in the Pharmacy book that are NOT gluten free. All other medications, which a good portion come from the USA, are gluten free. The list of gluten-free manufacturers in the Pharmacy Book is pretty long - way longer than the list of lactose free manufacturers. The pharmacist from glutenfreedrugs.com spoke at the recent Canadian Celiac Association National Conference in June/2010 and he confirmed the same information with regards to how many medications are not gluten free anymore - very, very, very few. All IV's are gluten free as they do not go into your intestines. As I said in my other post - it is very common for your first meal to be incorrect as you had not been ordering gluten free meals - it takes about 1 day at least in the meal system (1 full day cycle) to start getting correct meals.

 
Lynda
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said this on
23 Aug 2010 8:08:42 PM PST
Funny, this article was posted on Health Canada's GF link on Friday too and I responded to Lance on that posting. I live in Canada too but on the West Coast in Vancouver and I really think this issue has to do with the length of your hospital stay. Being in the hospital for a month at a time several times now I have had no problems. I get very plain gluten free meals like boiled eggs, broiled chicken, rice, steamed veggies, Ener-G food bread - does not go down well not toasted but it is safer being sent not toasted, cheddar cheese slices, vegetable sticks, etc and I have had no problems. In one smaller specialty hospital (UBC)that has a higher incidence of people on a gluten free diet or they try people on a gluten free diet on the group of wards I was on, they even make GFCF muffins twice a week.
I am tired of seeing posts from people making negative comments about hospitals when there over night or for one or two meals and they do not get a gluten free meal. It takes a day or two to get into the system. You cannot get gluten free meals in the ER. You DO have to come prepared however if you end up in a hospital in an emergency and onto a ward you can just request items like rice, steamed veggies etc. while your gluten free request is making its way through the system. The dietitians do meet with you if you are a long stay patient and they work with you on your meal - such as I wanted more real fruit rather than canned fruit and I was able to get that. The hospitals were Vancouver General Hospital and University of BC Hospital.

 
Ellen
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said this on
30 Aug 2010 3:34:34 AM PST
Absolutely, Lynda. It's completely unacceptable that in a health care setting, one should expect a medically safe meal if they're only hospitalized for a day or so. In fact, I think diabetics should be given high-glycemic index, sugary meals and people on a kidney diet be given regular potassium, high-protein meals. Heart patients should get burgers. If you can't eat what everyone else is eating, then you should either get sicker or not eat. Sounds fair to me.

I was hospitalized five years ago in California. In addition to having Celiac Disease, I have multiple, serious food allergies. I nearly starved, quite literally, during my five day stay. The dietician told me I should have someone bring me food if I wanted safe food to eat, and I had no family to do that.

Frankly, I'm sick of even those with Celiac Disease themselves thinking they shouldn't be entitled to the same consideration that anyone else with a serious illness would get. Negative? After nearly starving in the hospital after a very traumatic surgery, you bet! I should add that they also served me some fish covered in something I'm allergic to, and then lied to me about what it was. The nurse told me that it had come out of the package like that, so it must be plain. I doubt anyone even had read the label.

 
Christa
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said this on
30 Aug 2010 9:25:35 AM PST
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!

 
Tina
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said this on
30 Aug 2010 12:57:29 PM PST
Christa, You are very right about that! I feel bad for you. Hospitals should do more than they are doing.

 
Denise
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said this on
26 Aug 2010 11:57:50 AM PST
I recently stayed overnight in a hospital (Riverbend, Springfield OR) and they had a separate gluten free menu. It was nice to see that they had dedicated the time to research and provide a clear menu of gluten free foods. It was one less thing I had to think about.

 
Gabrielle
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said this on
30 Aug 2010 5:49:31 AM PST
Agreed 100% My type 1 diabetic & celiac daughter had two trips to the ER/hospital this summer and when we inquired about whether they understood gluten free eating, the response was as follows (and with confused looks from all with whom I spoke): "We'll try to make it as gluten free as possible" and THAT didn't inspire a whole lot of trust on my end so I brought ALL her food from home! They really do NOT get gluten free eating and these are supposedly top hospitals! Shame on them!

 
Coe
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said this on
30 Aug 2010 6:14:01 AM PST
While my wife was in recovery from knee surgery, she was given Kellogg's Rice Crispies for breakfast. When questioned, she was told that "Rice is gluten free". She asked that they read the ingredients list and they were surprised.

 
BarbaraDH
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said this on
30 Aug 2010 7:30:43 AM PST
Both my husband and I have celiac disease. He had outpatient back surgery a couple of years ago and was required to eat something before they would release him the same day. After checking their menu, there was only 1 item on it that I could be sure was gluten-free - a fresh fruit plate. When I first asked the nurses what was available that was gluten-free for him, they didn't know what I was talking about. This is just scary, not to mention totally unacceptable and dangerous. What if it was a severe allergy..... would they be so casual about the possibility of inducing an anaphylactic reaction?

 
J. B.
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said this on
30 Aug 2010 8:04:04 AM PST
I was hospitalized for 28 days iin 2009. During my 3 1/2 week stay in ICU, I received foods that were not gluten free 4 times. Luckily, my husband was keeping a sharp eye out for errors in the diet, and I didn't eat anything that made me sick. The dietitian said, "I'm more embarrassed than I can even say." But dietitians are not in the hospital kitchens and are not able to supervise meal and tray preparation. Many kitchen employees don't even speak English and don't know what gluten is. I would advise any person with celiac disease or allergy to gluten to question any hospital meal that is not clearly gluten free.

 
Tina
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said this on
30 Aug 2010 12:54:13 PM PST
The day that I was diagnosed with celiacs (via an endoscopy) the nurses in the ambulatory surgery center gave me juice and crackers to recover from the sedative!! I knew nothing yet about what I could have but became sick on the way home and had to return to the hospital. And when I had a cervical fusion done three years later, the nurses aid came in and offered me crackers! They don't pay attention. We have to be our own advocates. Make sure you tell your family members to make sure your meals are double checked also.

 
Lee-Anne White
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said this on
30 Aug 2010 6:31:46 PM PST
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 GF/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

 
Sarah
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said this on
30 Aug 2010 7:53:33 PM PST
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.

 
Jean O
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said this on
30 Aug 2010 10:54:26 PM PST
Great information!

 
Ella
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said this on
31 Aug 2010 3:50:37 PM PST
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,

 
Jim Dobstaff
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said this on
31 Aug 2010 5:33:33 PM PST
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!

 
Mary Jane
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said this on
02 Sep 2010 3:51:01 PM PST
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.

 
Lesley Carol Prince
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said this on
03 Sep 2010 11:46:07 AM PST
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.

 
Georgia Hartley
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said this on
12 Sep 2010 4:21:07 PM PST
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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