Symptoms that Allude Diagnosis

As I said before I basically have had medical problems my entire life, however, I do not think my Celiac became active until I was about fourteen, after I had sinus surgery. If that is in fact when it became active then it was active for approximately six years before my diagnosis. For most of those six years I did not have typical gastrointestinal symptoms. Instead I was chronically ill, became hypoglycemic, developed endometriosis as well as various other problems. Between such random symptoms and the lack of knowledge about Celiac Sprue it is no doubt that they didn't find that diagnosis for so long. Once I began showing symptoms I was lucky in that diagnosis took about four months. Within those four months I still began to question whether it was all in my head. Having atypical symptoms of anything is one of the most frustrating aspects to health problems and can cause you to second guess yourself.

I started suffering from severe joint pain and swelling a few months after the Celiac diagnosis. They ran blood work for rheumatoid arthritis but it was normal. I tried for months to get in to see a rheumatologist but couldn't find one that would see me since my blood work looked fine and I was so young. It wasn't until I moved to St. Louis and received a referral from my gastroenterologist that I was able to see one, and a good one. She did the blood work but also did a physical exam, took my history, and had x-rays taken. Despite the atypical blood work she diagnosed me with rheumatoid arthritis and began treatment. The time between my diagnosis and when my symptoms began was incredibly frustrating and I started to wonder if I was crazy.

Just this last week I have found myself in a similar frustrating position. A few days ago I had an appointment with my gastroenterologist because I have been having severe heartburn and vomiting blood. I was concerned, of course, which is why I scheduled the appointment, and I assumed I had a bleeding ulcer and/or a hiatal hernia. However, I wasn't as concerned as my doctor was who sent me directly to the hospital and had me admitted. She was concerned of course due to my past medical history, and the fact that I have recently been having headaches severely low iron, which can be a sign of anemia and blood loss. When I arrived at the hospital they immediately ran blood work and scheduled an EGD for the next morning.

I fully expected the results of the EGD to show something, but unfortunately they were absolutely clean. It's beyond frustrating, especially considering I spent a night in the hospital! I know I am not crazy and I know that that my symptoms are real, and I know my doctors believe me, but if they can't find a cause what else can they do? I am stuck back in the limbo of knowing there is something going on and the fact that my doctors cannot find any evidence of a problem.

Where I go from here is more doctors appointments, more tests, and more convincing myself that I am not crazy and something really is going on. I have no idea how long it will take or if I will get better or worse before it gets figured out! Thankfully I have an excellent team of doctors that I fully trust. It doesn't take away from pain and frustration though, but as I have learned many times over now it gets resolved eventually if not by diagnosis than by healing itself.

I think the worst aspect of the atypical symptoms that seem to allude a diagnosis is patience, especially when you don't feel good. You have to focus on the present. You can't dwell on how long you've been sick or how you'll feel tomorrow. I have tried and all it does is drive me crazy. It sounds like one of the world's biggest cliches and something I am currently telling myself, but there is so much truth in it.