I’ve had celiac disease for over 6 years. I’ve been blogging about it for over 3 years. I haven’t found myself weeping in a corner about it in over two years. And I haven’t drooled over real pizza in over a year.
In this time, I think we’ve made great progress in celiac awareness.
There are less B-list celebs jumping on the bandwagon.
The media does not quite butcher celiac as much as it used to.
Heck, I haven’t mentioned my buddy Dean McDermott in ages. Now THAT’S progress.
But then we have a stretch like these past few days and I’m left banging my head against the wall. Not an unusual occurrence mind you…probably explains a lot…but still more so than usual.
What happened? Let’s recap this week’s episode of “How My Stomach Turns”.
A hospital serves a celiac a cookie.
Our own Jennifer Esposito had an endoscopy this week. She gets em once a year to make sure her villi are happy (they are!) As she is coming out of the anesthesia, what does the hospital offer her? Yep…a gluten-filled cookie and a sugary drink. Thankfully, she was alert enough NOT to eat the cookie and actually had a nice chat with the staff afterwards. This is a hospital we are talking about. You know…the one where doctors and nurses who went to medical school work.
A doctor gives the wrong advice, which would have wasted time and money. Not the doctor’s of course.
I received an email from someone who is going to get tested for celiac on April 13th. We went back and forth about a few items and for some reason I decided to remind her that she MUST be eating gluten consistently for about a month or the tests will not be accurate. I figured she knew that because she was under a doctor’s care. Nope. She was told to remain gluten-free until the procedure. When a blogger is correcting a doctor’s medical advice, you know we have a problem here.
A doctor “cures” someone’s celiac.
I follow a celiac complaint support group on Facebook. One woman wrote in that her husband no longer has celiac. How does he know? Because he got another endoscopy and it showed the villi had healed. So the doc said his celiac was gone and he can now eat gluten. And that’s exactly what he does now. Of course the villi has healed if you are gluten-free! That’s the whole point of why we eat gluten-free; to heal…but not to cure. So this guy is going to be in a world of hurt before long.
I could go on…but…well I really just don’t feel like it.
Point made…we’ve got a lot of work to do folks.
One step up…two steps back.
Take it away Mr. Chesney (cool version of this song)…