Aren’t those photos you see so flattering? Just Kidding!! The picture on the left with the dark hair was when my second child had just turned 1. It was our annual Christmas party and I was skinny as a rail. I don’t mean in a good way! Now the picture on the right was when my second child was in Kindergarten, about 4 years later after healing the gut, putting weight back on and adding a 3rd child to the mix!
There are so many people that get misdiagnosed or undiagnosed and many doctors surprisingly enough still don’t know as much as they should about celiac disease.
Let’s rewind a bit. November 16th, 2010, I had my beautiful, second child, a baby boy. That was a rough year as it was. I had recently lost both my mother and grandfather within 11 days of each other. I was also told that my son would be born with multiple health issues. (That’s another story for another time, and luckily he was born perfectly healthy!)
So moving into the spring of 2011, I began walking with a double jogging stroller a few times a week and started noticing the baby weight coming off! Who wouldn’t be excited about that right?! It turned out to be more than just baby weight. I wasn’t really the best or I should say healthiest eater. I lived off of breads, pastas and pizza as a child.
As time went on, I noticed my stomach feeling worse. I couldn’t understand why on earth I was going to the bathroom multiple times a day, always hungry and having bad stomach aches that made me just want to crawl in bed and stay there for hours. I remember contacting my primary care to see if we could meet. They did all sorts of blood work and the only thing that appeared was my anemia. They put me on an iron pill (mind you, I used to be on iron as a kid for anemia as well but then stopped taking it)
As we moved into the summer months, the weight kept dropping and I kept feeling like crap! Nothing was fitting me anymore and then my husband noticed my spine was starting to stick out. Ok my spine always has a bit but this was drastic. I never was one to weigh myself either and when i hopped on the scale, I had dropped to 110 lbs from 135 lbs. . I called the doctor immediately and pushed for more answers. This wasn’t right. I felt sick all the time and was withering away without a diagnosis.
After a week or so of hounding my primary care and contacting other doctors for more answers, they finally ordered more blood work and we would meet back to reassess the situation. After a few days, my primary care called and asked if I could come in to discuss the results. It was there she said my blood work showed that I had celiac disease. Heres the funny thing, she didn’t know anything about it! She said she did as much research as she could and as far as she knew I would have to give up eating gluten, and wheat etc. but not sure for how long. She ended up finally referring me to GI specialist.
Move forward a few months. My GI specialist couldn’t fit me in until the fall. I was now a mere 85lbs. Everyone was worried about me as I was myself. I felt depressed and lost without answers. I read as much as I could about celiac disease, but I couldn’t quite process how I had it! I had soooo many questions. I also wasn’t allowed to go fully gluten free without meeting with the specialist. After meeting with the GI specialist he said we need to do an emergency endoscopy and after the procedure he would go over everything with both my husband and I!
Day of the procedure, about a week later I felt so many emotions. I was happy that I would finally have some answers, but scared and wanted to gain weight back. I felt ugly, and unhealthy. I wore massive sweatshirts to hide how skinny I was, because I couldn’t explain to everyone what was causing this. I also didn’t want people to stare. I was so self conscious.
After the procedure my GI specialist came in and explained to me that I definitely had this thing called celiac disease. He told me that I needed to change my diet right away and if I didn’t I could end up with intestinal cancer before the age of 30. He was very direct with the results and not afraid to be brutally honest. He handed me I think 30 pamphlets that told me what celiac disease was, what gluten is found in, how to avoid it. He then told me that this was an autoimmune disease and that there is no cure. I will never be able to eat the way I did as a child and would have to eat gluten free forever in order to heal my gut. He showed me pictures from the endoscopy about how my intestinal vilii was supposed to look. I guess you could say it should look like the strings on a mop, but mine was flatter than flat. My body was not absorbing the nutrients it needed to survive and therefore I was just withering away. As he kept relaying information, I just started to ball my eyes out. I don’t know if it was the information overload or if it was the idea I won’t ever be cured or even the fact that I had to forever say goodbye to my favorite foods. Before he left the room, he also added that people with celiac disease throughout their lifetime have a 90% chance of developing other autoimmune diseases as well as food allergies.
My husband asked what may have caused this. I was sort of shocked thinking about his answer. The specialist said celiac disease is usually caused when something traumatic has occurred and your body sort of goes into shock mode. At the time, that made perfect sense to me! I was pregnant, my body was already going through so much, I was told about how my son may not survive, I lost both my mom and grandfather and then the stress of having my son and hoping he was healthy. I was a psychotic, hormonal, stressed woman!
I mean holy crap, someone please just hand me a glass of wine because I am going to lose it!
I was going to be referred to a dietician to help me start this gluten free process. I remember getting in the car with my husband and just losing it. How did this happen? We both then realized that even back when we were younger and dating that I would always complain I had a stomach ache after eating. I was also anemic and had enamel ware on my teeth as well. I never really put all those things together as symptoms. Well let’s face it if you google some symptom online you might as well be digging your grave now!
Do you want to know the one thing that I wish I knew then, that I now know??? My GI specialist NEVER told me this was a genetic disease! I honestly didn’t even find that out until a few years ago. I had no idea that one of my parents have to have the genetic gene for me to have this disease. (This will be another post for another day) There is so much information out there now a days on celiac disease, and I truly encourage anyone that if something doesn’t feel right please do not be afraid to go with your gut and keep pushing for answers. I can’t imagine how it would be if I never did.
So there it is, my long diagnosis post! I promise over time to write more informational posts, but really wanted to dig deeper and let you all know a little about my personal experiences.
Until next time….
XOXO
Alicia
The Celiac Corner
The Celiac Corner 