Something's wrong here, folks. Wa, wa, wa, What's up Doc?
We were ultimately blessed with a remarkable recovery.
Through that experience, a frightening reality surfaced----hospitals and medical facilities are not always the safest place for people with with food allergies, intolerances and sensitivities.
It can actually be a dangerous place to be!
My son was never diagnosed with celiac, but he is most definitely sensitive to gluten. He couldn’t eat for the first several days after an auto accident (due to his injuries). When he could eat, one of his first meals, broth, had to be removed when I questioned it. Gluten! Yup---it had wheat (as many broths do). And once in rehab, even though I was assured before he was transferred, that they could accommodate his diet, having discussed it with several people, including the dietitian, he was given (and ate!) nongf cereal his first morning there, before I arrived.
For many with an intolerance to gluten, this would have been catastrophic, had they been him. Severely broken jaw, a major back wound still healing, broken ribs still healing, traumatic brain injury. If he’d been one to vomit or experience diarrhea with gluten (as many do), they would have had to peel me off someone. He was facing enough pain!
When those of us with special diets require a hospital stay, we need to make the appropriate contacts in advance in order to ensure our food will be safe (and available!). After our experience, however, I’ve been involved in many online support group discussions where those with celiac and ncgs (nonceliac gluten sensitivity) were unable to safely eat hospital food. And this is insane!! For us---there was no preparing. This wasn’t a pre-planned hospital stay. This was a tragedy where it often took effort for this mom to just put one foot in front of the other. A single statement of, “He can’t eat gluten” should have been enough to entrust his diet to them. I wouldn't have had to question every med had I told them he was allergic to penicillin! This just wasn't right!
Changes were eventually made at that particular rehab facility. They called me weeks after my son was home, after I sent a letter about our experience. I was told about the changes they made. Yes, one person can make a difference. But that was one very small drop in a very large bucket.
I included this information, and our many, many food experiences in the hospital and in rehab, in the book I wrote about my son’s journey and recovery,
They Syrup Maze:
An Inspirational Journey Through Recovery from a Traumatic Brain Injury.
(paperback and Kindle editions.)
If, as someone with a medically required special diet, you have a scheduled medical event that requires a hospital stay, make the appropriate contacts ahead of time--the head dietitian and/or the head of the facility where you will be staying. If any hospital stay resulted in you having to either: eat food that was unsafe for your medical condition, avoid much of the food available because it was unsafe for you, and/or have family and friends provide food for you during your stay, write the head of the hospital and the head dietitian once you are home. Explain your particular needs, your experience and your expectations. Just because you are home, it shouldn't "not matter anymore."
Each of us alone is just a drop. Together---Let's make it rain!