I recently read an article that new research has shown that certain autoimmune diseases, including celiac disease, may be triggered by the Epstein-Barr Virus, often called Mono Virus or The Kissing Disease. As I read the article I started counting backwards, trying to remember the summer that I got Mono and when I got diagnosed with Celiac Disease. The more I thought about it the more that what I had just read made complete sense.
As I mentioned, Celiac Disease is a genetic autoimmune disease, meaning that there is a gene that carries the disease and if you have it, you most likely have celiac disease. The interesting thing about this gene is that it doesn’t automatically cause the person to suffer from the symptoms and often times the gene needs to be “turned-on,” per say, for symptoms to happen. This is why many people don’t experience symptoms until they are older.
I, myself, was 21 when I got diagnosed, and prior to that I had never really had any problem with the foods that I ate. This new research that I read about has really made me think about what may have turned-on my celiac gene. I had always thought that it was the fact that I lived in Italy for 6 weeks and spent the whole time eating pasta, bread, and drinking beers. I just assumed my massive amount of gluten intake was overload for my body and it finally said screw you I’m done. But now thinking about the time leading up to my celiac diagnosis I realize that my symptoms started prior to my time in Italy, they just came on slowly and periodically and after Italy was when it went full blown. This is when I tried to remember when exactly I had gotten Mono and it was about 1 year before I got my diagnosis. I started having the horrible bloating, pain, and all around intestinal discomfort off and on just after having mono. I even ate gluten free for about a week to see if it made a difference but I gave up, fairly quickly, and figured it was dumb of me to try. Plus at the time gluten free stuff was still cardboard like and very un-appetizing.
Just after I had mono I got some blood tests done, mostly because my doctor wanted to test to make sure I did indeed have mono since my throat cultures I had gotten a few weeks before came back inconclusive. At the time my antibody levels were raised, but nothing alarming. This is one of the first indicators of celiac disease. Because celiac disease is an autoimmune disease this means that it triggers your body to release antibodies to fight off what it thinks are intruders in the body. When the first round of enforcements (antibody release) don’t work your body sends out more and more in hopes to eventually fight off. Your body does a similar thing when you have a cold or the flu. There are different types of antibodies for different diseases and because of this doctors can usually test for celiac this way, but only if you have gluten in your system, meaning that you have to be eating gluten for it to work.
Over the next 6-9 months I went to the doctor periodically because I never fully felt 100% after having mono but they never had an answer for me. I remember going in for blood tests one time and my antibody levels were actually flagged by the lab because they were well over the upper limit and my doctor just brushed it off like it was nothing and there was no convincing her otherwise.
The big deciding factor for me as to what could potentially be wrong came in September of 2010. I went out to dinner with my parents one night to a greek restaurant and had a huge pita sandwich, and prior to that dinner had had a bowl of raisin bran as a snack at a friends place. We were walking around some stores after dinner and I remember being horribly uncomfortable. At one point my mom looked over at me and actually asked me what was wrong because my stomach was so distended I looked 5 months pregnant. I was absolutely miserable. After this incident I took things into my own hands, buckled down, and tried the gluten free diet again. I read a lot about what the high antibody levels and other symptoms could mean and of course there were many disease options but I figured going gluten free was the most simple solution to try and then if it didn’t work then I would go from there.
Within a week of going gluten free I was a completely different person. I felt a million times better then I had prior to being gluten free so I just continued being gluten free and never turned back. Then in December of 2010 I started having severe back pain and I had to go in to the doctor for tests again. I happened to see a different doctor in the office this time because my normal one was out of town. He sent me for blood tests and x-rays. I remember them calling and asking me to come in to review the results and being highly confused. I went in and the doctor just looked at me kind of shook his head and said, well we have two things going on here. I had severe anemia and a rare back problem called Spondylolisthesis, which was completely unrelated to the blood problems. It was pure luck that he had sent me for blood tests and had found the anemia. He looked at my previous blood tests with the high antibodies, which were now significantly lower, heard my story about going gluten free, and immediately sent me to a gastroenterologist. The gastro doctor confirmed my general docs suspicions and diagnosed me with celiac disease on the spot.
Now, the reason those with celiac disease have to avoid gluten is because the gluten damages the villi on the intestine that allow the body to digest vitamins and nutrients. This is why I had anemia, which is a very common problem in those with celiac disease. My doctor was concerned that the celiac disease had messed up my intestines so much that it was causing bleeding from my intestines and making the anemia as bad as it was so he decided to do a colonoscopy and endoscopy to be safe. Luckily everything came back normal and I just took some iron for a few months and I have never had a problem since.
It’s funny to sit here now, nearly 8 years later, and think about what I went through to get a diagnosis. And honestly I am one of the lucky ones. My rare back problem is really the sole reason I ever even got diagnosed, otherwise I may never have known about the anemia and since I was gluten free at that point it may have eventually fixed itself on it’s own. But there are countless people out there who go through what I went through and suffer for years before they get that doctor who recognizes what is really right in front of them. And then to know that there is a simple genetic test (which is NOT covered by insurance mind you) that could get the answer without the struggle, and before anyone has to have something like Mono trigger the Celiac Disease gene into action, it really irks me, to say the least. But I guess that is the world we live in and all we can do is make efforts to bring more attention to Celiac Disease and remind people that it is about more than just being gluten free. It is a true autoimmune disease that is life threatening if it goes undiagnosed. My hope with this post is to show people this is the case and remind the world that being gluten free isn’t just a fad diet but is a life saving lifestyle that IS NOT a choice.