I have it too. Lots of nausea, I have to eat small portions and do it all day. Stay away from dairy, gluten, red meats, etc as they're tougher to digest.. I've had it for 4 yrs. it's like you always have one foot on the brake. So much energy goes to the gut and I never wake up feeling good. A life changer. I could go all day on what it feels like

Funny I was warned off dairy and ALL carbs...I eat small portions of meat, chicken and fish ... with some very soft steamed veggies...all hurts but somehow it works as then when it finally makes it down I do not have to deal with the intolerance issues
And yes it is SO hard to explain to others how it feels...words can not explain..I find exercise really helps and a positive mind set. It is a mind game after all ... when it does not become acute (that is)
I wake up in the morning...scream (internally) they are all BASTARDS and then get up and start my day...my situation started 7 years ago...the SIBO stuff and stomach stuff (gastritis) started 2 years ago...

Tough to wake up, throw up, then be ready for the day

Hi, i just saw this post, and i also have collageneous gastritis. Was diagnosed about 3 years ago after a second bout of vomiting blood, the last ultimately resulting in blood transfusions after complications from an endoscopy. At least at this
point I'm fortunate in that i feel well most of the time. I've found that eating a very
"clean" unprocessed diet helps tremendously, alcohol seems to make it worse. I take proxtonix, often every day, but when I'm eating very well i often don't need meds. If you'd like to speak further please message me. I've never met anyone else with this diagnosis and I'm glad to hear there are doctors known to work with this diagnosis since my GI hasn't seen it before. Thanks for posting.

Hello @calif,

Welcome to Connect; thank you for joining us and sharing your history. Isn't it amazing how diet plays such a significant role in our health and well being! @guaranlam @galy @mjgarr (who has microscopic colitis), have also written about the diet changes they've had to make, and I hope they also join us with their insights.

@calif, may I ask what other changes you've had to make, besides diet? Are there any particular medications that have helped?

I've switched from a relatively healthy but regular American diet to one of mostly unprocessed foods focused on vegetables and fruit and avoiding white flour products, fried food and packaged snacks/candy. Recently i added in a morning smoothie which has enabled me to go off of my daily does of proxonix. I believe the key ingredients making the difference are fresh ginger, turmeric and cinnamon. I also add frozen banana, flax seed meal, organic almond milk, spinach and other frozen fruit such as cherries. May not sound appealing but it's quite good. The addition of any red fruit does give it a gross color, but since it works for me i don't mind. Happy to provide any additional info that would be helpful, I'm grateful to have found people who have even heard of this diagnosis.

I forgot to answer your question about changes I've made other than diet. I have always exercised fairly consistently, so i can't compare sedentary vs active lifestyle. I have found stress often causes symptoms, so having less stress in my life over the last couple of years may have helped with my symptoms as the episodes of vomiting blood and intense pain have not occurred in the last two years. Before i started with the diet changes i found taking the protonix every single day was imperative, i would notice symptoms almost immediately after eating if i skipped a dose. However, I've been almost entirely off meds for the last few months with the diet changes.

Thank you so much for following up, @calif. Isn't that so true, that stress can have quite an impact on our health! In fact, here's a published study which you may wish to read:
The Effect of Emotional Stress and Depression on the Prevalence of Digestive Diseases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4398234/

Hi, my daughter was diagnosed with CG in 2012 when she was 12 years old. She is the poster child for stomach bleeds and has had multiple blood transfusions until she was prescribed Octreotide (Sandostatin) LAR Depot monthly shots, which recently our insurance changed to Lanreotide (Somatuline) LAR depot, which so far has had the same positive effect. We've changed her diet over the years, could be better but she is now 19 years old and in college. She's pretty careful what she eats, avoids gluten like the plague, but loves her red meat (grass fed beef mostly), limits dairy and has an occasional sugary treat. She still struggles with nausea, especially motion sensitivity. But since she's been super active in school, running and rock-wall climbing, she'd getting stronger. I'm hoping she will out grow this disease soon. I've been researching this since she was diagnosed and hope to see more helpful info out there.

Hi my daughter hav diagnosed with CG in 2014 when she waz 5 years old .But the doctor diagnosed it eight months ago with gastro copy; they did not give us any solutions. She only uses 40 mg omeperazol . She is always painful. We are very sad because there is nothing that can help us. Do you have any experience with this disease? For help my daughter.