Mayo Clinic Connect
I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
Liked by Teresa, Volunteer Mentor, jng123, jjdenaro, kellye5 ... see all
After having lost 30 pounds and suffering from severe stomach cramping and unable to eat much, I had a gastric emptying procedure and diagnosed with gastroparesis. Have had for about 6 months now. My gastroenterologist prescribed a medication, (not FDA approved, so I get from Canada) 50mg domperidone. I take before I eat and 1 before bedtime. The excruciating pain is gone, but still have the discomfort of feeling full all the time, but no more pain. Weight stabilized and haven't lost anymore but haven't gained any back. I'm told I will always have this. No cause (possible virus), no cure, and now I do sleep. Hope this is helpful to someone
Liked by Kanaaz Pereira, Connect Moderator
I feel so sorry for you I also have both GP and CC sometimes not sure is worse when I was vomiting 30 or times a day with the GP or now in a bad flare with the CC and pooping 20 or mores times a day. Hope the meds work for you. Good Luck
Because of the lack of information on this I started a Facebook page it’s called “Collagenous gastritis discussion group “ and hopefully we can start sharing information .
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Two years ago when my son was diagnosed there was hardly anything on CG. Now if you google – info is coming up!!
Just read a study. There is CG pediatric onset and CG adult onset. Pediatric comes by itself. Adult onset usually comes with collagenous collitis. My feeling is that they all have the same root cause – just different in look/symptom. My feeling is also that these are auto-immune. Once you get one auto-immune, not unusual to develop another over time. Doesn't hurt to follow collagenous collitis studies to see what is helping. As of January 2018 – Seattle Children's put together a research study of 10 medical centers in the US looking at SCD diet to see if it helps as much as meds or reduces need for multiple meds. It is for Crohn's/collitis pediatric patients only. Study locations include Stanford, Atlanta, Kansas City, etc.
Liked by Teresa, Volunteer Mentor, Mindi
@hklet1941 .. I have tried domperidone with no success, because of its side effects for me. It can be gotten at USA compounding pharmacies with no problem. I think it was pricey. Hard to remember back 5 years.
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?
Liked by Teresa, Volunteer Mentor
Welcome to Connect, @lgc15, and thank you for sharing; I'm glad you've joined us here.
You may notice that I moved your message and combined it with this existing discussion on collagenous gastritis (CG). I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
@kellye5, thank you so much for responding and sharing a bit about your's son's struggles with CG. You hit the nail on the head, @lgc15, when you mentioned, "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'd love to hear from @epvb @guaranlam @calif @kacolton @mjgarr @mindi @galy @buckeyeliz @kaliwebster @jng123 @jjdenaro @bakingchick @mommyof6 @gracief and others in this group, who've also taken the time to share their CG journey, and probably share the same sentiment.
@lgc15, may I ask how you've started modifying diet, lifestyle, etc. to cope with this diagnosis?
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.
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.
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