This Is So Scary

[mart]

Hi everyone. I've been gone for a while because we took our first gluten-free vacation out of the country. We rented a gorgeous villa in Turks & Caicos with a private beach. We snorkeled in gorgeous coral reefs in just 2 feet of water right outside our door. We packed some gluten-free food (like pasta) and bought the rest at an IGA grocery store.

The whole experience was wonderful, but when we returned we all ended up with horrible vomiting and d. The doctor said it was the travelers' virus (Norwalk?). We ended up at the children's hospital in Miami (it's such a "great hospital" that many travel from all over the Caribbean and South America to seek specialized medical attention for their children. So you could imagine my shock when after filling out the gluten free menu for my kids (who were there 5 days), we received Kellogs Corn Flakes for breakfast. I told the nurses and doctors about the malt flavoring containing barley and they were shocked. They were so upset at their kitchen who promised to go over all their ingredients again. The next day, we got Kellogs Rice Krispies for breakfast, malt flavoring being the 2nd ingredient. It seems like every level of personnel came to see me to discuss this with me...they were definitely concerned. The next day I ordered bacon for breakfast, but penciled in a note saying, "Hormel and Oscar Meyer brands are gluten-free." The assistant kitchen supervisor personally came to see me to inform me that she didn't send bacon in my children's breakfast tray because it was not Hormal or Oscar Meyer brand. It didn't even occur to her that she could call their bacon's manufacturer and ask if it was gluten-free. When the director of the hospital came to see me, he was so impressed with my knowledge of the gluten-free diet that he asked me to be on their parent advisory council. I told him I'd gained all my knowledge from this site and all of you really smart people! Maybe they just don't want me to make a big stink of it or sue them, who knows. Anyway, they had to release us early because they could not guarantee a gluten-free meal for my children and I told them I didn't trust their kitchen anyway. The supervisor called me before I left because the director insisted she make a gluten-free dinner for my kids. I told her that she should look on this site for a lengthy list of the many names gluten can go by. She was so nasty. She just said, "We already have a list." My kids were released at 4 pm that day without eating anything but a banana because I couldn't trust their kitchen. Sad.

Bottom line. Many people who suspect their diet is gluten-free at this hospital are actually getting poisoned, not just celiacs, but autistic children and hiv patients, many who are on strinct gluten-free diets. You'd think such an institution would be better educated. As for me, I'm horrified. Please don't take just anyone's word for it when they claim something is gluten-free. Who'd think you could get glutened from something off the gluten-free menu of an internationally celebrated children's hospital? Makes me wonder about the gluten-free menus in restaurants.

[KayJay]

I am so sorry your family got so sick. The hospital you would think of all places should know what Gluten free is! I had a similar problem at our hospital when I had my baby. I was glad that I was released early because I had to send back all my meals about 3 times. It would take 3-4 hours before I got a meal and by then it was time for the next one. Needless to say I was pretty upset and hungry when I left.

[jerseyangel]

Wow.

I am so sorry that you and your family got sick. This is shocking--a prestigeous hospital--any hospital, really, ought to be able to serve gluten-free meals and do so correctly.

Thanks for the eye-opener. As if being hospitalized wasn't bad enough, we now have one more thing to worry about.

Hope you're all doing better

[Isonic]

This happened to my dad when he was last hospitalised at a large hospital in Newcastle on the eastern seaboard of Australia for the heart problems and electolyte imbalances that killed him (he was 89).

Having filled out the form that his special dietary requirement was a gluten-free diet, the kitchen proceeded to send him Kellogs, and later lamb with obviously thickened gravy and a tub of icecream with thickening agent 1442 and barley-derived malto-dextrin clearly labelled on the outside of the tub. When I repeatedly sent these back, the dietician came and very patronisingly told me that corn and rice were OK for Coeliacs, and that ice-cream was dairy, not wheat. (Gee! why didn't I know that?)

Practising patience and tolerance I gave her our excellent Coeliac Society of Australia Ingredient List booklet and showed her what hidden gluten ingredients were in what the kitchen had sent. She backtracked and said she'd check it out. Whatever she did had no effect, as he was sent the EXACT same thing the next day. I asked at the hotel I was staying at if I could possibly use their kitchen to cook my dad gluten-free meals and they were extemely helpful. That lasted two days.

Dad developed a golden staph infection (fantastic places for getting ill, hospitals) and was moved to Cardiac ICU, where I was not allowed to give him the gluten-free meals I'd prepared in case of infection (!). When I pleaded with the doctors please to intervene in the matter of his diet, since the constant diarrhoea was weakening him even further and his bloated stomach and exacerbated dermatitis herpetiformis was driving him mad, one doctor actually said that at this stage he should be able to eat what he liked, since he didn't have long to live. "At this stage," he told me gravely, "all we can do is give him palliative care." When I pointed out that a glutening would weaken his immune system even further, in fact poison him, and that far from palliative - which I understand to be making people as comfortable as possible - dad was being made more uncomfortable. He said he was sure the kitchen had it all well under control and I should stop worrying about things that were the hospital's responsibility and dashed off to do his important work helping people.

I was flabbergasted at the level of arrogance and ignorance that existed then (only three years ago) among doctors who purported to have patients' interests at heart. Obviously I'd come across this heaps in GPs in the community, and even endocrinologists. One does expect something of a higher level of knowledge in hospitals, though.

[Guest nini]

I know, this is so disturbing.

A friend of mine that has Lupus was in the hospital on bedrest for several weeks before the birth of her son last year, and she is also on a gluten-free diet to control the Lupus symptoms. The menu and the food that the hospital kept sending her were absolutely awful and NOT gluten-free... so between her husband and myself, we just kept bringing food into the hospital for her to eat and as much as she tried educating the nurses, dietician and kitchen staff, it NEVER got any better and they continued to bring her food containing gluten. She just kept returning it uneaten.

It is absolutely a shame that hospitals of all places cannot guarantee a safe menu option for Celiacs or other gluten intolerant individuals, somehow we as a community need to advance awareness to the point where they cannot ignore us and condescend to us anymore.

Isonic, in the case of your dad, that is so sad... you would think that they would want to do whatever it took to make him more comfortable, instead of aggravating his condition and weakening his immune system and effectively bringing on the exact thing you are trying to prevent by taking your loved one to a hospital. You are trying to get them well, not make them sicker.

[lovegrov]

Some hospitals are improving but this isn't unusual. When I was diagnosed my wife ended up bringing me food. My first gluten-free meal from the hopsital was chicken in a mystery sauce that was almost certainly thickened with flour on top of noodles. Also had a Boston cream pie. When we complained we were told to scrape the chicken off and eat it. When I refused they brought a replacement -- with the chicken swimming ina sauce on top of noodles. Quite an improvement.

Breakfast was an improvement except the biscuits.

richard

[queenofhearts]

Hospital food is just a nightmare. It never ceases to shock me how completely ignorant of nutrition the staff is. Even things you'd think were no-brainers. My MIL was in for heart surgery & was served Swedish Meatballs. Nice low-fat meal, huh? I wouldn't trust them one bit for gluten-free restrictions. If I have to go I'll definitely bring my own sustenance. I've always maintained that the very best get well gift for anyone in hospital is REAL FOOD.

Leah

[eKatherine]

Hospital food is just a nightmare. It never ceases to shock me how completely ignorant of nutrition the staff is. Even things you'd think were no-brainers. My MIL was in for heart surgery & was served Swedish Meatballs. Nice low-fat meal, huh? I wouldn't trust them one bit for gluten-free restrictions. If I have to go I'll definitely bring my own sustenance. I've always maintained that the very best get well gift for anyone in hospital is REAL FOOD.

Leah

What I have read is that people who have had major surgery are in such dire need of calories that it is acceptable to serve high-fat food, at least until they start to make a recovery.

[lindalee]

Wow.

I am so sorry that you and your family got sick. This is shocking--a prestigeous hospital--any hospital, really, ought to be able to serve gluten-free meals and do so correctly.

Thanks for the eye-opener. As if being hospitalized wasn't bad enough, we now have one more thing to worry about.

Hope you're all doing better

Well said! Awareness .... Doctors,dietitians the list goes on....

[taz sharratt]

Hi everyone. I've been gone for a while because we took our first gluten-free vacation out of the country. We rented a gorgeous villa in Turks & Caicos with a private beach. We snorkeled in gorgeous coral reefs in just 2 feet of water right outside our door. We packed some gluten-free food (like pasta) and bought the rest at an IGA grocery store.

The whole experience was wonderful, but when we returned we all ended up with horrible vomiting and d. The doctor said it was the travelers' virus (Norwalk?). We ended up at the children's hospital in Miami (it's such a "great hospital" that many travel from all over the Caribbean and South America to seek specialized medical attention for their children. So you could imagine my shock when after filling out the gluten free menu for my kids (who were there 5 days), we received Kellogs Corn Flakes for breakfast. I told the nurses and doctors about the malt flavoring containing barley and they were shocked. They were so upset at their kitchen who promised to go over all their ingredients again. The next day, we got Kellogs Rice Krispies for breakfast, malt flavoring being the 2nd ingredient. It seems like every level of personnel came to see me to discuss this with me...they were definitely concerned. The next day I ordered bacon for breakfast, but penciled in a note saying, "Hormel and Oscar Meyer brands are gluten-free." The assistant kitchen supervisor personally came to see me to inform me that she didn't send bacon in my children's breakfast tray because it was not Hormal or Oscar Meyer brand. It didn't even occur to her that she could call their bacon's manufacturer and ask if it was gluten-free. When the director of the hospital came to see me, he was so impressed with my knowledge of the gluten-free diet that he asked me to be on their parent advisory council. I told him I'd gained all my knowledge from this site and all of you really smart people! Maybe they just don't want me to make a big stink of it or sue them, who knows. Anyway, they had to release us early because they could not guarantee a gluten-free meal for my children and I told them I didn't trust their kitchen anyway. The supervisor called me before I left because the director insisted she make a gluten-free dinner for my kids. I told her that she should look on this site for a lengthy list of the many names gluten can go by. She was so nasty. She just said, "We already have a list." My kids were released at 4 pm that day without eating anything but a banana because I couldn't trust their kitchen. Sad.

Bottom line. Many people who suspect their diet is gluten-free at this hospital are actually getting poisoned, not just celiacs, but autistic children and hiv patients, many who are on strinct gluten-free diets. You'd think such an institution would be better educated. As for me, I'm horrified. Please don't take just anyone's word for it when they claim something is gluten-free. Who'd think you could get glutened from something off the gluten-free menu of an internationally celebrated children's hospital? Makes me wonder about the gluten-free menus in restaurants.

oh my god, this is really shocking i recently was admitted to hospital and was given gluten-free meal ( so they said) but was too ill too notice if it did indeed contain gluten. you are qute wright about the hiv and iv patients thing as they are really ill as it is what could hppen if they glutend from on top of that it could seriosly kill them what with D and vomitting. the womans attitude stinks! im really sorry you had this experiance

[TinkerbellSwt]

I am so sorry you had this awful experience. I know I had a tough time in the hospital. I couldnt even have the broth they served, due to the fact it wasnt gluten free. So my meals consisted of, adult baby food, hot tea, and water. I had my mom bring me in stuff too. It was awful and the staff wasnt very helpful to me either

[jennyj]

When I was at the hospital in April for my iron infusion the meal they brought me consisted of an all-beef pattie, boiled carrots, and a plain baked potato. It was all very plain but it didn't make me ill. They really tried to work with me.

[mouse]

When I recently had pneumonia, I had a PICC line installed and a nurse came in daily to put the antibiotic in. My doctor said that the hospitals here cannot safely feed his diabetic patients and they would have no idea what to safely feed me. With his diabetic patients they sometimes give them a chocolate sundae for desert. Every dietician should know how to feed a diabetic. I sometimes wonder what they teach in school to dieticians.

[penguin]

Part of the problem is that in some hospitals, the food is outsourced, so a big conglomerate catering operation (such as sodexho) is in control of the foods and their dieticians decide on menus. When my mom was in the hospital getting knee replacements, she was really frustrated because they would feed her a blueberry muffin and orange juice for breakfast. No protein to be found ANYWHERE. There was something like you could have milk or a boiled egg with your cereal, it made no sense. The hospital dietician was really frustrated also, but because of the contract the hospital had, she had no control over menus.

[StrongerToday]

I work in a large, cuttinge edge teaching hospital and I've learned (from patient stories and personal family members) that you ALWAYS need a patient advocate. Never assume the hosptial knows everything you do. This is especially important if you are going to be under any pain medication - you *MUST* have someone there to speak for you and remember the things the dr. tells you.

Yes, I think it's very sad that dieticians don't know everything we've learned - but you really do need to be in charge of you! (And this goes for everyone too!)

[Mandy F.]

All I can think is that the bottom line at any hospital is money. It's hard to get a doctor that really cares at a hospital who pushes them out by harassing them to screw patient care to save money. The same is true for the kitchens. The staff who prepare the meals get paid minimum wage and could just as easily work at McDonalds (and we know how much we can trust them) and I even doubt that a dietician prepares the menues, I would guess that they just have a little input on the process but the final decision is left to the cost cutters. It is sad, though, and something to keep in mind in case we ever do wind up in the same situation.

Now that I think of it, in the supported living agency I work for, a staff person from each house makes menus for anyone with special dietary needs and the only job requirements are a HS Diploma or GED and a car. The agency has a nurse to do med checks but no dietician. I know that in my house, I was told "here, make a menu for him, he's on a 1500 calorie a day diet and there are some suggestions from the dietician in the drawer." Real helpful, huh? especially since the guy had thrown away most of the suggested meals because he didn't like them. There is no oversight as to what he eats, or does, or anything else and without caring family in his life, he would be a lot worse off. The department of mental health and medicaid/medicare cuts lead to the mentality that nothing matters as long as it's under budget. Which reminds me, if you have special needs children or family memebers who may one day live in a supported living setting, it would probably be less of a headache to personally hire your own staff and avoid agencies altogheter if possible.

-Mandy

[eKatherine]

My parents were living in an assisted living facility where the food was awful. My mother explained that the menus came from the office in another building and went to the kitchen. Purchasing was done by the office, and materials were delivered to the kitchen, which was staffed by people who were hired strictly on the basis of their being willing to accept the wages that were offered. In other words, they were relying on the kitchen head's expertise that that menu could be turned into meals. They were incapable of producing healthy or tasty meals, let alone providing meals for specific dietary requirements.

[ms-sillyak-screwed]

-

[chrissy]

my daughter was hospitalized for 3 months recently. i suspected her diet was not gluten free and asked that a TTg be run. her levels were over 100. they had only been 12 when she went into the hospital. we were at a different hospital in boise idaho for the first 2 weeks, and they did an excellent job with her diet---it was the last 2 1/2 months at children's in seattle that her TTg went so high. they claimed her diet was ok when i questioned it---that a "few" mistakes had been stopped. but the proof was in the blood test.

[queenofhearts]

my daughter was hospitalized for 3 months recently. i suspected her diet was not gluten free and asked that a TTg be run. her levels were over 100. they had only been 12 when she went into the hospital. we were at a different hospital in boise idaho for the first 2 weeks, and they did an excellent job with her diet---it was the last 2 1/2 months at children's in seattle that her TTg went so high. they claimed her diet was ok when i questioned it---that a "few" mistakes had been stopped. but the proof was in the blood test.

Chrissy, that's just awful! I hope she's okay.

Leah