Hi there. I am a 25 year old woman and was told two days ago by Stanford that I have CG. This diagnosis came after a long road of doctor visits to my local doctors office. It first started when my doctor realized that my anemia was not normal. I have been anemic since I was in the 3rd grade. Growing up I was a very small eater and didn't ever feel "good". It came in waves mostly so I learned to live with the feeling. In 2017 my doctor sent me to a hemotologist to get my anemia checked. It was that doctor who sent me to get a colonoscopy and upper endoscopy to see if I was bleeding internally or if my body was simply not absorbing iron. I had a iron transfusion then my produces. The colon area looked clear, but my stomach was a different story. I had 3 stomach ulcers and severe inflammation in my stomach lining. I was given Omeprazole that I still take every morning and that helped me a lot. Without it, I'm having severe stomach pains, vomiting after every bite of food, no matter what I'm eating or drinking, like chicken broth. It's truly one of the worst pains I've ever felt. I went back and had two more endoscopies, my ulcers healed but my inflammation was concerning to my doctor. He took a ton of biopsies, blood test and nothing was making sense. He thought it was an autoimmune, but he couldn't make sense of the test results. He refereed me to Stanford to see if they could help. They reviewed my pathology tests and came back with the CG diagnosis. I have a meeting back at Stanford on the 24th to come up with a plan on how to move forward.
Since I finally got the answer I've been waiting forever for, I'm feeling very mixed emotions. I have waited for this answer for quiet sometime. But I didn't expect it to be some 'rare disease'. I also read that it does tie into my anemia. That blows me away because i was always told that my anemia is my fault because I wasn't taking care of myself or eating properly. I never understood why I was such small eater. I would get stressed out eating over at someone's house because I didn't want them to get offended that I wasn't eating a ton of food. I didn't understand at random times why I would throw up. I would to start not feeling good when I was doing fun things and I would think to myself "come on stomach, not now, not today." To say I'm glad I finally got an answer isn't right. I'm not glad because it's a diagnosis that doesn't have a lot of answers. I know what I have but I don't truly understand what it means. But on the other hand, I was glad because it could be way worse. It could have been something that could end my life or dramatically change my life as it is right now.
So for the few of us out there that has CG, how did it change your life and how do you go about life with this? Did you stop eating everything you loved? Diet change? Are you taking certain medicine that helps? Do any of you have anemia as well? Iron infusions?