We’ve all heard the doctor horror stories (and if you haven’t, read them here…disturbing to say the least).
We all know that celiac disease continues to be misdiagnosed and that the average time to get accurately diagnosed is 6-10 years.
We all know that because there is no “cure” for celiac disease and no drugs to treat it, and therefore no financial incentive for the medical community, it often gets overlooked.
What you may not know is that so many people, while trying to find a reason for their ailments, are diagnosed as having psychological issues. Imagine that? A doctor saying you need psychological help simply because he/she can’t find a physical reason for all your symptoms.
I hear it over and over again and it frustrates me to my core.
I want share a story that a fellow celiac sent to me. Not only is she a celiac, but she is a registered nurse. And yes…she was told she was crazy.
I am a registered nurse and I knew um, nothing about celiac disease prior to my diagnosis. I have worked in the ER for years and yet knew nothing about it!
As a patient, like all celiac sufferers, I have a horrendous story to my diagnosis, but the long and short of it being that although psychiatric problems were the first/second/third thing every GP I’ve ever been to about the symptoms ever said (it was always in there somewhere), someone finally listened to me and tested the right thing.
I am honestly not surprised about the lack of health community knowledge about celiac, because a) it’s not immediately life threatening and b) aren’t we (celiac sufferers) all crazy anyways??
I wish I had known something about it, because hell, I would have picked it up myself a lot earlier than anyone else did. As a health professional, I thought I was going crazy with my constant symptoms with no obvious clinical basis, so I just told myself that I was ok and I would just have to live with the constant pain, nausea, diarrhea, vomiting, constipation, teeth problems, nerve problems, etc… list goes on.
Crazy aye, I think I drove myself there, I had no answers so I just ignored it, but it wasn’t going away.
My celiac demanded attention and finally I returned to the GP and she mentioned celiac although her third suggestion was maybe I should see the psychologist!! My blood test and biopsies were positive+++ and here I am newly minted gluten free lifestyle, HEALING!
What I want to know is if it is so common, why aren’t GP’s encouraged to test those who have iron deficiency and symptoms of leaky gut or vague autoimmune symptoms for it? Why isn’t there a bigger push to get them to take notice? Why do we all have to go through so much trauma to get anywhere, anywhere at all with our doctors? How can they diagnose IBS without a clean celiac blood screen? What gives them the right to make us think we are going mad?
Do you know how severely deranged your mental state has to be to be causing actual bodily upset like gastrointestinal symptoms and the others? It has to be pretty high on the level of derangedness!
So turns out I’m not crazy, and I tell myself everyday that I am healing now! I am my own health advocate, I am the only person going to look after myself and that is what I am doing now.
Do not rely on your GP; if something is wrong with you, you need to make them understand. It is not in their nature to push past the initial diagnosis to look for something more sinister or hidden unless there are great big arrows pointing them that way. So make those arrows bloody big!
Life goes on… Better and better