Well, as far as the United States has come regarding availability of Gluten Free food and labeling, we are still sorely behind when it comes to education of the general public. It is unfortunate that something which has a drastic and direct effect on a person is only made public by the efforts of that person. Because, let's face it. If people don't have someone directly in their life who is impacted by an illness, people seem to have no reason to care.
Lucky for me, the intake nurse at the surgical center had a niece with Celiac Disease. Lucky, because she had half a clue as to issues I might face, but even she was woefully unaware. Otherwise I'm not sure I could be confident in how my surgical experience will have gone. I'm getting ahead of myself. Let me tell you what happened.
I am scheduled to have surgery on October 8th. It is not Celiac related, and so I won't share the details. However, the doctor advised that I will be monitored at the surgical center for 24 hours after the surgery. That monitoring is to involve snacks, dinner and breakfast.... yikes!
I met with the intake nurse today to discuss typical pre-surgical concerns. How is your health? Do you wear glasses or contact lenses? Do you have any allergies to antibiotics or painkillers? Respectively, I answered fair, yes, and no. Then I dropped the bomb... "but, I do have Celiac Disease."
I expected the usual response... the blank stare with crickets chirping in the background as tumbleweeds float daintily through the person's brain. However, this nurse jumped right in with "We do have some Gluten Free food options, but we can't guarantee that they won't get cross-contaminated so you do have the option to bring a cooler with your own food if you'd feel more comfortable. Oh and make sure you bring your own version of Saltines because we won't be able to give you any crackers if you get nauseous after coming out of the anesthesia."
I was pleasantly surprised at this response, but then sadly disappointed as she then said "So we'll list GI issues on your chart for the Celiac, since that is the part of the body it effects." I had to jump in and explain to her that now that I had been Gluten Free for 8 years, my body didn't display GI Symptoms unless I ingested a lot of gluten.
For a cross-contamination, I have much different symptoms which mostly are autonomic and neurological. My cheeks and ears turn bright red as well as feeling hot to the touch, but I never get a fever. I get heart palpitations and shortness of breath. I get almost narcoleptic sleep attacks where I have to lie down and sleep. They last for about 45 minutes and then I wake up fine. I get brain fog and have trouble gathering the words I want to say. Does any of that sound like a GI issue to you?
Additionally, I had to explain to her that I was at risk for immune response to both topical and IV exposure. I made her add powder free gloves to my chart (since they couldn't tell me what the powder was made from) and gluten free IV meds as well. I could see her doing an internal eye-roll at that one, but I am nothing if not thorough.
It is sad that because of the predominant symptom being GI, all of the other auto-immune symptoms are either unknown, ignored or forgotten. Because of the ignorance of our society, we have to communicate an auto-immune disease to the general public, by calling it a "food allergy."
Now, I expect this from your average Joe on the street. But, I am sorely disappointed that a MEDICAL FACILITY affiliated with one of the most sought after Hospitals in the area can't provide an appropriate selection of gluten free foods, and cannot guarantee that the foods won't get cross contaminated.
You can count on me bringing a cooler of my own food. There isn't a chance in hell, I'm going to go through surgical recovery with the added stress of an auto-immune reaction. Uh uh. No thanks!
No comments:
Post a Comment