Celiac.com 10/11/2019 - These three things don't seem to go together, but really they do.
Recently, Cigna Healthcare has been putting out ads with Queen Latifah about "talking to your doctor about everything". They want you to talk to your doctor about stress or anything bothering you. This bothers me, A LOT.
But it gets worse, the average time for people to get diagnosed with celiac disease is approximately 10 years from onset of symptoms. TEN YEARS! Because there are so many celiac symptoms and it can present in a variety of ways, I can see how this might happen. But now there are inexpensive blood tests for initial screening of celiac that are really, really good. Not 100%, but well over 90% accuracy for the blood tests alone. (This is an average of all tests combined.) Also, when I got tested in 2012, the tests were over $1,000 and took a week to get back. Now, you can get an at home screening test for $100 and back in two days.
So, I'm a little upset that Cigna is asking us to tell them when something is wrong. I might be telling them and they aren't listening. An undiagnosed celiac patient might be getting dismissed with IBS or antidepressants. A first degree family member to someone with celiac might be asking for testing. Because they don't fit the "classic" profile of someone super skinny with diarrhea all the time, they can't get the tests run.
It infuriates me that this is put back on us as if we aren't telling them there is a problem. Its like when someone is newly diagnosed and their TTG IGA doesn't go down quickly enough, they say that person is still eating gluten--maybe but maybe not. It is hard to completely eliminate gluten from someone's diet because of all the crappy labeling laws in the US. It takes at least a year to really figure out the diet. And then give it another year before the numbers get into the normal range. So, for me, it should take someone no less than 2 years to get their blood test numbers into the normal range. Some people do it faster and if they can, great! That's awesome!
I have some health issues I need to get checked out. Specifically, I need to get checked out to determine if I have an amoxicillin allergy. I had a bad allergic reaction that sent me to the ER. I even asked when I was in the ER if he was sure it was an allergic reaction, he was certain. We believe the reaction was to amoxicillin and I need to have some allergy testing. If I am allergic, the next time I get one of the "cillin" antibiotics it could be really bad. I don't know. I am nervous because I'm afraid I'm going to get told there is nothing wrong and we don't need to do testing, just tell your doctors in the future you are allergic. Great, do I need a medic alert bracelet? I'd hate to be unconscious and they give me a "cillin" and I have an anaphylactic reaction. Or maybe I'm crazy. I don't know, but I should not be afraid of going to the doctor to find out.
As patients, we have a responsibility to tell our doctors what is going on in our bodies. In turn, doctors have a responsibility to listen and speak to their patients as if they were their parent/children. I'm not saying its a perfect system. But we need to advocate for ourselves to make sure we get the care we deserve.
So, that's my rant today. I needed to get that off my chest! Thanks for listening.