I have been sitting on this for a couple of weeks because I wasn’t really ready to talk about it. I kept it to myself until now, mainly because I hadn’t yet gone through the complete line of testing that is required to get an official diagnosis, but also because I wasn’t even sure if I wanted to. I certainly did not ever expect to be diagnosed with Celiac Disease, but I am extremely thankful for a real answer!
There is nothing more frustrating than knowing that there is something medically wrong with me, only to continue being told time and time again that the doctors can’t figure out what it is. I have been poked and prodded for months and months only to be told that my blood work comes back negative for every single thing they test me for. And it certainly doesn’t help when my doctors give up and shrugged their shoulders at me. I wanted answers!
A few months ago I shared with you here on the blog about how my doctor told me that my body was responding with an auto-immune response to a viral infection that I had in January. At the time I honestly believed that I could have had Covid-19, but antibodies testing came back negative. So at this point we are assuming that what I had was an extremely bad flu, although my doctor warned me that many of the antibodies tests were giving false negatives. You have no idea how bad I wish I would have gone to the doctor to be tested for the flu back then. Live and learn, right?
I ended up seeing a rheumatologist in June who then diagnosed me with Fibromyalgia, but I knew there was more to it than that. I knew there had to be something they were missing. But I went home with my Fibromyalgia diagnosis and a prescription for Gabapentin and prayed that I would feel better with the medication. I did not. As a matter of fact, Gabapentin, which ironically enough is an anti-seizure medication, actually ended up causing me to have TWO seizures. Go figure!
I’m not sure that I have ever felt more defeated than I did at that moment. I KNEW something was wrong, but I was so frustrated that all of my doctors seemed to be giving up on me. However it was just a few weeks ago that our church youth group went on a private retreat in the Ozark Mountains, and I was asked to go along and help. While I was there I spent a lot of time talking to another mom who was there, who just so happens to also be a registered nurse. It was through conversations with her that led me to think that I needed to ask my doctor to test me for Celiac Disease.
When I got the call that my blood work tested positive for antibodies, I wasn’t sure if I should cry or celebrate. I can’t tell you how liberating it is to FINALLY have a diagnosis. (Sort of). But I also know that I have an unhealthy relationship with food, and this diagnosis was the LAST ONE I wanted. I was not ready to change the way I eat.
At this point I had two options. I could continue on with testing in order to get an official diagnosis, or I could do a food challenge and see what happens. Since the next step in testing would require a biopsy of my intestines, I decided to see what happens with a food challenge first. There is no cure for Celiac Disease, and the only way to treat it is to remove gluten from your diet completely. Getting diagnosed with Celiac Disease is a process.
I am one week into a mostly gluten-free and dairy-free diet. Why dairy free as well? Well my thirteen year old daughter is allergic to dairy, and unless I want to cook one meal for Jason and Addison, another meal for Peyton, and another meal for myself, we all have to be in this together. So for the past week, everything I have cooked has been both gluten and dairy free. I have failed a few times, but I am learning that my body lets me know pretty quickly that I have been glutened. Getting diagnosed with Celiac Disease has not been fun.
I wish I could say I feel better, but I don’t. Not yet anyway. I definitely can feel a difference in the amount of bloating I have, but the muscle pain and energy levels are still a huge problem. I am hopeful though, and believe it or not this past week has not been as difficult to navigate as I thought it would. I figured I would give up after day two. I have NEVER been good at dieting because when I want the brownie, I want the brownie. But for some reason it’s different this time. At least for now. I am just thankful for a real answer.