I'd like to start this out by saying that I realize that there are multiple reasons doctors don't/can't know everything about every possible illness. I also realize that there are many amazing doctors that do the necessary research to ensure they are diagnosing individuals correctly AND prescribing the correct treatment.
But then there are articles like the one I just read. The article titled "Many Providers Stray From Guidelines For Diagnosis and Management of Celiac Disease" cites a study (although small in my opinion) that confirmed doctors aren't following proper guidelines when it comes to the diagnosis or treatment or celiac disease. I'd absolutely love to have more of the story. I want to know why they aren't following guidelines. I want to know what is causing this whether or be stubbornness or lack of access to information. I want to know more! :)
The biggest problem I see in providers not diagnosing correctly or prescribing the correct treatment is that individuals then don't know what they're doing either. I can't describe the frustration I feel when I see people asking for help when it comes to celiac disease, and people coming up with the craziest of answers. I'm all for individuals making their own choices, but many are doing this without doing their research or truly understanding the repercussions of their actions.
There is this crazy process with celiac disease where individuals either can't find a doctor who recognizes the symptoms or refuses to test them. If they do find a doctor to test them, incorrect testing methods are often used leading to an inaccurate or incomplete diagnosis. If they do receive a diagnosis, the method of treatment is often incorrect.
My experience went like this:
1. For over 10 years, I dealt with "classic" symptoms of celiac disease. I was often told I had IBS, and I was prescribed various medications that happened to have a side effect of constipation to help offset the diarrhea. I was also told to "eat more bread" because that would help my constant stomach upset.
2. I finally found a doctor who looked me straight in the eyes after I went over my laundry list of symptoms and told me he didn't even need to test me--he knew I had celiac disease. He said I needed to start a gluten-free diet immediately, and I could look it up on the internet to figure out how to do it.
3. He ordered blood tests and a colonoscopy to confirm the diagnosis he was sure of anyway. Unfortunately, the tests he ran did not constitute the full "celiac panel" which meant I never got that definitive answer. When I finally got in for the colonoscopy about eight weeks later, the gastroenterologist said I should have an endoscopy to confirm celiac disease. By that point, I had done enough research to know that I should have had an endoscopy in the first place, and it was probably pointless at that point because I had been on the gluten free for eight weeks. I agreed for them to do it because I had already done the prep, and the doctor explained it was possible they would still find damage.
4. When I went to the follow up appointment for the colonoscopy and endoscopy, the gastroenterologist greeted me by saying something to the effect of, "Congratulations! Your biopsy was clear, you don't have celiac disease." I don't recall exactly how many biopsies they took, but off the top of my head, I believe it was only one or two (the last standard I read was a minimum of 7 as damage is usually very patchy).
5. My blood tests were never explained, and I had to request the records a year later when I had a better understanding of the disease as a result of my own research. I was curious if the diagnosis was correct, and I was angry and frustrated and hoping it was actually something else. Despite the fact that the wrong tests were run, deep down I knew I had it, and I couldn't bring myself to purposely ingest gluten to have the tests run again.
6. A few years after my diagnosis, while questioning other intolerances and such, I remember my doctor saying that I needed to "avoid" gluten when possible. He looked at me like I was a crazy person when I explained how strict I needed to be due to how sensitive I was, and how horrendous my reaction was to small amounts of it. I questioned his method of diagnosis, and he looked puzzled at the possibility that he had done anything incorrectly. At the same time, he looked me straight in the face and confirmed that I definitely had celiac disease.
7. I changed doctors and I basically don't mention celiac disease. At this point, I've done countless hours of research, and unless I get lucky, I figure I know more than the doctors do, so I'll manage it myself.
It's crazy to me that basically everything was done wrong every step of the way. It wasn't even just one doctor that did things wrong. It seems every practitioner I have ever seen has no clue what the diagnostic or treatment process is for celiac disease. I will continue to believe I have celiac disease because I did have "classic" symptoms that resolved on a gluten-free diet, and I have a horrible reaction to it even when I have no idea that what I've consumed contained gluten, so it's not a placebo effect. I'm quite certain that I would have received the "gold standard diagnosis" had the doctors realized what that was and how to do it.
Am I angry that doctors don't understand? I'll admit that I do get angry sometimes, but more than anything, it's frustration. There are multiple reasons that it can be incredibly hard to receive a diagnosis of anything, and it would be impossible for a doctor to know everything about every possible illness.
Due to all of these details, I will always be an advocate for informing individuals of the correct process to receive an accurate diagnosis.
If you are interested in more information on the correct diagnostic process, you can click here for a quick description of the process I did and/or click here to read a previous post of mine on why I think it is so important.
I hope to do a future post with links to the various research clinics and how they describe the process because the research study I originally referenced basically only says what the doctors are doing wrong. It would be very hard to realize why the study is so concerning unless you are familiar with the process.