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
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?
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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.
Liked by kellye5
@epvb I was diagnosed a couple years ago with collagenous gastritis (CG) by Dr. Murray and Dr. Acosta at Mayo Clinic, Rochester. It first started in 2013 after a stressful period i was experiencing heartburn all the time and anemia – i had an endoscopy, and they didn’t see anything. Then, I had a massive GI bleed (hematemesis + melena). I was hospitalized for about 2 weeks and had a transfusion, and they did a bunch of endoscopies and just assumed I had regular case of bad gastritis. After that, i stopped eating or digesting anything that could make my gastritis worse, but I unfortunately had a second bleed in 2014, and that’s when they finally found out about my CG. I contacted Joseph Murray at Mayo and they gave me budesonide to take twice a day. Although it has been helpful since then, I’m having a rebound of symptoms just recently, so I’m looking to connect with people to see what worked for them. I’m wondering if one day they’ll find the root cause (like they did with celiac). A lot of the definitions/profiles of collagenous gastritis don’t really fit my experience, so I’m curious to see what other people have been through.
VI live in Sweden, my daughter is CG vi don’t have an specialist doctor here my daughter is 9 yo she is paint and I always crying and I don’t know what vi are doing .please help us.
I don’t know where in Sweden you live, but usually you find specialists at the major hospitals- especially university hospitals. Could you ask her regular doctor if they can find out for you and give her a referral. Don’t give up. In my experience one has to be a little pushy to get things done there. Good luck!
@kellye5 I also have leg pain/aches and have not heard anyone else complain about these. Is there anything that helps you with this or have any doctors made any recommendations for the leg aches? The drs I have seen who know about cg do not believe that the leg pain is associated with it. Thank you.
Same for my son but you are maybe the 5th person to report these symptoms…While not a dr. I believe they are connected. He will take ES Tylenol. CBD. Not much helps with this disease I am afraid. Best of luck. We return to Mayo in October. so far deteriorating health since our visit. It is a beast.
Although I have been told to limit ibuprofen, I find that that is the only thing that helps the leg aches and I take it when they are bad. It provides relief. I was not aware that others had mentioned the muscle aches so I appreciate your response @kellye5
I don’t suffer leg pain. My pain is only in stomach and gut. However, have you tried Magnesium supplement?
Perhaps painful legs may be related to not getting adequate nutrition due to issue with stomach.
Magnesium helps leg cramps so might be worth a try, that is if you haven’t already. Would not work instantly but maybe after taking for few weeks.
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My 19 year old daughter was diagnosed with CG when she was 11. It has been a long road. She had a hemoglobin of 5 and had to receive transfusions. Took a very long time to diagnose. She is trying gluten free diet and we will see how it works. Has anyone had pain relief with this type of diet?
Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined this group. I would sincerely encourage you to take a look at these videos on the Gastroenterology and GI Surgery Page on Connect:
– The Strange World of Non-Celiac Gluten Sensitivity https://connect.mayoclinic.org/newsfeed-post/the-strange-world-of-non-celiac-gluten-sensitivity-1/
– The Gluten-Free Diet: A Practical Look https://connect.mayoclinic.org/newsfeed-post/the-gluten-free-diet-a-practical-look-1/
I'm tagging @jng123 @guaranlam @bakingchick @mommyof6 @epvb @theresap @looloo @tlcollazo1230, who have all shared what works/what doesn’t with regard to various diets.
@nm18, has your daughter just started a gluten-free diet? May I ask if you could share more about how she managed her symptoms so far?
Wow! I like this group already. Thank you for the quick reply I feel like for I had no one to discuss this with for all these years that understood what she is going through. She just started the new diet a few days ago. She experiences stomach pain and lethargy on a daily basis. She does not watch her diet at all and I am convinced this could exacerbate symptoms. She loves very spicy foods and puts red pepper or hot sauce on everything. I am trying to have her limit that while she goes gluten free because I am convinced that hot foods spicy cause more pain as well.
Liked by Kanaaz Pereira, Connect Moderator
How long have people been on the gluten free diet before they noticed a change in symptoms?
I eliminated spicy foods, acidic foods and fried foods several years ago and continue to do so more for heartburn than stomach ache issues. I tried a gluten free diet for 6 weeks but found there was no change in my symptoms. I find that I can eat a particular food several times with no problem, but that same food can cause severe stomach aches and pressure along my digestive tract the next time I eat it. There is no consistency with food and symptoms.
I have a 17 yr old son with CG. We are totally grain free, took out all additives and preservatives, and eat only organic grass fed meat. It's the GAPS protocol which is is similar to SCD that has been recommended for Crohn's patients. It's very hard to do but we finally have it down after 3 months. He is finally doing better which we are sooo excited about. PM if you would like to discuss.
Hello @nm18 – your daughter sounds a lot like me! I am 21 now and was diagnosed with CG when I was 19! I had to have 4 transfusions it blood and 2 of iron! It was crazy! I had no idea but I was jaudenice so the ER admitted me right away. Then I had an endoscopy and they found a lot of collagen. I am due for another endoscopy this June to see if anything’s changed. This might sound crazy but last summer I went vegan AND gluten free and I had never felt better. BUT after 3 months I was super light headed again and fatigued so i added meat back into my diet. Right now I am being gluten free and dairy free. I am actually haven’t quite a few stomach issues right now and feeling light headed very often- and this is eating healthy foods. Whenever I eat gluten my stomach feels ‘bubbly’ and I am tired. And dairy really upset my stomach with bloating aching and pain. Sometimes I feel CG is very similar to celiac disease. Which is a good disease to look at and somewhat follow protocol since there isn’t much to look at for CG. If your daughter wants to contact me since we are close in age / have similar experiences she / you can DM me!
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