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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?
Replies to "Hi there. I am a 25 year old woman and was told two days ago by..."
Hello Kellye5 Did Dr Joe Murray put your son on any medications after the twelve day hospital stay at Mayo?
What was his plan?
Yes. He and Dr. Cartee have kept him on prescription anti nausea medication which he relies heavily on and an antidepressant not for its typical use but for properties it has shown to help with the digestive disease. Believe it or not our internist has just gotten all the information from Mayo so this protocol starts next week. We are however looking into disability....he has very little quality of life. Has anyone else gone on disability?
I am curious what antidepressant you are trying. I have tried several over the last 2 years for their digestive effects but the side effects have been too severe and I have not been able to stay on any of them. I hope you have better luck with them.
He starts one Friday. Will keep everyone posted. Has anyone had any problem getting Soc Sec disability with CG?
kellye5. Sorry to hear your son has to go on Disability. I cannot give any information or advice to you as have no experience with this.
What is the anti depressant called that helps digestive system? Has your son been prescribed any other medication, such as Budesonide, by Dr Murray.
I didn’t know that an antidepressant could mess up you digestive system. I am on mirtazspine, but I have such terrible GERD it is giving me pneumonia. Any help?!!!
We are just looking into it. He will start mirtazspine tomorrow but seeing @cammerzell I am very concerned.
Dr. Murray said that Budesonide was not the best option for us, @mindi
Mirtazapine was one of the anti-depressants that I tried but was unable to continue. The worst side effect for me was drowsiness that lasted well into the afternoon even after taking it for quite some time. I was only on 1/2 pill of the lowest dose but I could not get through the day without long naps. I am hoping you have better success with it.
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Very sorry to hear lgc you now find yourself in same place as myself and others on this site with CG.
My story is similar to yours with frequent pain after eating in childhood years and also chronic anaemia. It was not until teenage years, after vomiting large amount bright blood, I had Endoscopy and was diagnosed with CG. However it was not diagnosed immediately after the first Endoscopy but about a year later after many Endoscopies.
You mention "vomiting" Is this blood?
Low level bleeding in stomach passes through gut evidenced in bowel actions. This can be missed with small bleeds. I now know this was happening at times throughout my childhood and was the cause of my anaemia and low iron stores. My Mum says Drs did not suggest investigating back then but just put me on Iron and short course of Omeprazole. It wasn't till I had a large stomach bleed in teenage years vomiting large amount of blood that I was finally investigated by Gastroenterologist.
That must have been very hurtful for you to be told anaemia was your fault and you were not eating properly.
There is not enough attention/research being done for CG. This is very disappointing considering the severity of disease and impact it has on our lives.