If you've had a challenging experience, I beg you to write the head of your hospital. Describe your dietary needs, describe your experience, and describe your expectations.
There are a couple programs that I am currently aware of, that train restaurants, hospitals, and other facilities on how to safely prepare food for those of us who are gluten free (because we HAVE to be.) Please share these with your local hospitals:
Food Training Programs:
*National Foundation For Celiac Awareness’ GREAT Gluten-Free Foodservice Training
*Gluten Intolerance Group of North America (GIG) Food Service Training
(Know any others? Please let me know and I'll add them in.)
Just a few experiences from others that I have collected:
*Personal experience*: After a horrible automobile accident, one of my son'ts first meals was broth, which was taken away when I questioned whether or not it was gluten free. Nope, it wasn't. He was actually given gluten in the rehab facility, even after I was assured they could feed him safely. I included our struggles with safe gluten free food along with his remarkable recovery in The Syrup Maze: An Inspirational Journey Through Recovery From a Traumatic Brain Injury.
*L*: I am a nurse aide and saw a nurse give a celiac patient Saltine crackers because her stomach was upset. It was too late for me to do anything because she had already eaten some. I kindly reminded him that her life was in his hands, literally now. He was more careful after that but the damage was already done.
*A*: While on both IV pain meds and oral ones too, following surgery, they fed me a gluten bun! Something in my brain tried to warn me, but I could not make a decision (think pain meds) so I ate it! Bad decision! My reaction to gluten is inflammation, quickly effects breathing. I started coughing and wheezing. Had to have chest x-ray, nebulizer breathing treatments, and use an inhaler. None of which should have been necessary except the dietary mistake!
*R*: I have 2 stories for you, two separate hospitals. Hospital A: Had to call down to the cafeteria to place meal orders. Every phone call a different person answered and what one person said was gluten free the next person said wasn't. The cafeteria staff basically had no clue, ended up having family members bring me food so I'd know I was eating safely. Hospital B: After having surgery the nurse brought me some toast to munch on, asked if it was GF, she said no. There was a sign on the door to my room stating I had Celiac and an allergy tag on my wrist stating the same. Guess she couldn't read.
*N*: I recently had a hysterectomy, told them I was gluten free, had gluten free written on my food ticket, but had mac n cheese on my tray, saltines, and bread. I asked the nurse if they were all gluten free and she laughed and said certainly not. I asked her if she was prepared to deal with my projectile vomiting had I eaten any of it and she looked at me like I had a third eye. Ugh!
*D*: The dietician was told that I needed a gluten free and soy free diet. They sent me regular grits, bacon and white toast...and graham crackers for breakfast. I didn't eat...and filed a complaint. For lunch, I received steamed vegetables, FRIED chicken smothered in gravy and mashed potatoes. Oh, and let's not forget about the pound cake for dessert. I didn't eat and filed another complaint. For dinner, I received turkey with gravy, cornbread dressing, corn and pie. I didn't eat and filed another complaint. The next day, the doctor was very concerned that I was starting to run a fever and my blood pressure was dropping. I asked him if it could be caused by not eating. He went bolistic on me. After I let him finish his rant, I told him what happened with my food. Within an hour, I had a bowl full of fresh fruit and a vegetable omlet....and a personal visit from the dietician.
*S*: I work at our local hospital and they know gluten free. I have never had a problem. They offer many varieties of homemade gluten free foods and snacks, as well as UDI's brand snacks and muffins to purchase. We are very fortunate.
*J*: My son was hospitalized for 3 days when he was 7 - with intestinal inflammation (after sneaking an oreo at a friends house) that affected his appendix and almost required an appendectomy. After a few days, they wanted him to start eating toast, broth, jello... when I reminded the nurse it had to be gf, her response was - well what can he possibly eat! Eventually the hospital provided gf toast - but when I examined it, it was filled with lots of toasty crumbs and I new right away it wasn't toasted in a dedicated toaster, I was also told the broth was gf... I wouldn't let him eat either the bread or broth (and if I had, he probably would have needed that appendectomy). Side note... there was absolutely nothing I could get from the cafeteria that was safe, I had to order out
Please comment with your experiences. Would also LOVE to hear the good ones! :)