Diagnosis

Diagnosis may be the most difficult part of the entire Gluten-Free process. Unless you know to specifically ask the doctor to do the test for it, you can go through years of misdiagnoses and mistreatment. I suffered all my life (20 years) before I was finally correctly diagnosed in June 2010, a year ago. And even then it was only by my own research that I figured out what the problem was....It wasn't the doctor figuring it out, it was me.

All my life, even when I was a little kid, I suffered from horrible digestion problems that eventually led to malnourishment and other problems that I eventually came to find out were symptoms of Celiac Disease. My symptoms included Lactose Intolerance; belly distention, cramps, and pain; loss of appetite; nausea; weight gain; chronic fatigue; depression and anxiety; frequent respiratory infections; and a few other symptoms. All of these things and constantly feeling sick had become a part of my day-to-day life. I always wondered what was wrong with me, but I never dreamed there would be an answer.

And there wasn't an answer until I started working at a small cafe in my hometown in May 2010 that catered to special diets including the Gluten-Free one. Up until this point in my life I had never even heard of gluten or that you could be gluten-free. I didn't start looking into it more until a man who is strictly gluten-free started coming into the cafe very frequently and also wrote a few paragraphs on Celiac Disease in my church's newsletter. It was then that I realized this could be the answer to the reason I've been suffering for the last 20 years. I went home and the first thing I did was get on WebMd and looked up Celiac Disease. The more I read about it, the more I realized this was what I had...There was no way it could be anything else. I had so many of the signs and symptoms that if Celiac Disease wasn't what was ailing me, I was sure I would go on the rest of my life feeling awful. Luckily, I learned, there was a test for the disease.

So, I made a doctor appointment. I wrote down on a piece of paper everything I had learned about Celiac Disease from the page on WebMd including my symptoms and walked into the doctor's office prepared. The thing about Celiac Disease is that, unless you live in a bigger city, a lot of small-town doctors have never even heard of it. And if they have, it hasn't been much. I sat down with my doctor and told her exactly what had been going on all my life, and told her I wanted to get tested. She admitted right away that she didn't know a whole lot about Celiac Disease, but told me that she had had a patient not too long ago who had been misdiagnosed at the clinic with IBS but was later diagnosed at a larger hospital to have Celiac Disease so she'd at least heard of it.

We went to her computer, (yay, technology!), and she opened up a medical database and went straight to Celiac Disease to read and learn more about it and to figure out what test I needed to have done in order to get diagnosed. We discovered that the initial test is called an IgA TTG (IgA tissue transglutinamase antibody) Test. This test checks levels of antibodies in your bloodstream and if they are raised, and if the test comes back positive the next step is to have a Small Intestinal Mucosal Biopsy to confirm the diagnosis and see the extent of the damage to your small intestine. Once it has been confirmed and the biopsy has a positive result, the next step is to go on a Gluten-Free diet.

At the time, I wasn't aware that it is best to have both of these tests done to get a totally positive test result, so I have only had the IgA TTG test done which came back positive. Once I knew the results of that test I went on a Gluten-Free diet and started feeling better, so I knew Celiac Disease was the culprit. If you are getting tested, however, I recommend getting both of the tests done and also if you are going to have the tests done you need to be eating a gluten-rich diet in order for them to be accurate. Once you go off of the gluten your body begins to heal itself and once it's healed, the test results will be wrong.

If you even so much as think you might have this disease, get yourself tested. It's easy and it can be life changing and life saving once you have it done. I recommend educating yourself on Celiac Disease if you think you have it before you see your doctor, though, in case they don't know much about it. Write down your symptoms (all of them!) and be open about talking with them with your doctor. If you leave something out, it could mean the difference between correct and misdiagnosis. Once you're diagnosed you can get on the path to not only better health, but a better life as well.