The purpose of this post is to ask those in the community to tell their story about the road to diagnosing Celiac Disease or gluten intolerance.
I myself am still working on getting an accurate diagnosis regarding Celiac disease. I believe I have this versus the gluten intolerance based on my symptoms. When I eat gluten, it takes me a few hours to a day and then my symptoms manifest in the way of sore joints, fatigue, poor concentration and achy muscles. I refuse to eat gluten in order to be tested... I just feel so darn bad when I do, so isn't that enough of a diagnosis in itself? With that said, I still want to know for sure. I want to start trying to have children soon, and I want to rule out any other potential health problems or risks. For example, it would be good to know if I have vitamin deficiencies and low bone density etc.
The challenges I have had with physicians has been nothing short of frustrating. I know however if I just keep trying, I will finally find someone who has experience and knowledge with Celiac, so I try to stay optimistic.
I'm interested in learning how long it took others like me, and challenges you have faced along the way. Were you eating gluten free before your diagnosis? How long did it take to find a doctor that was knowledgeable or that took you seriously? Were you misdiagnosed first? What tests did you take (biopsy, blood test, gene testing)? Or, have you decided to skip the official diagnosis, and chose to just eat gluten free because you know your body and what makes it feel better?
I'm really curious to see every one's answers and look forward to future discussions about this. I look forward to hearing from all of you!
Here is an article from Celiac.com about the average time it takes to be accurately diagnosed:
Average Time to Diagnosis 10 Years