Describe your life prior to diagnosis:
I had been underweight my whole life. My pediatrician used to say that I had a very fast metabolism and that’s why I was always so thin! I also used to frequently have heartburn and vomit. I’ve had several urinary infections, and I’ve had anemia on and off since I was a teenager, too. I don’t remember ever going more than three months a year without taking iron supplements. I was so used to the taste of iron on my mouth! And because of that I suffered a lot from constipation.
Because of all my gastrointestinal symptoms, I had my first endoscopy when I was 15 or 16, but no one ever brought up the possibility of celiac disease to me or my mom. So I continued to suffer from nausea, vomiting, migraines, dizziness and fatigue, and everything was always considered by doctors to be “stress-related.”
How did you come to know (or suspect) that you have celiac disease?
When I got pregnant my iron levels dramatically went down and I had to get many iron infusions. Almost a year after I had my baby, I decided to go to a gastroenterologist and ask for a check-up because I knew something wasn’t right with me and I had had enough!
The first exam I had was an endoscopy and the doctor who did it asked me if I had celiac disease because my intestinal villi were completely flat! After that I did a blood test which also confirmed I was positive for celiac disease.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
I believe my first symptoms were there since I was a child, so it took me 37 years to get diagnosed!
Describe your experience with living with celiac disease:
Since getting diagnosed I have been on a roller coaster of emotions! At first I was so angry at every doctor who could not figure it out earlier. Just 3 months after I removed gluten from my life, all my levels of vitamins, including iron and ferritin, got so much higher!
Since my diagnosis in 2015, I have been on a very strict gluten-free diet and I also changed the way I look at food in general. I started paying much more attention to what I put in my body, making sure that is it not only gluten-free, but that it is also truly good for me.
