Collagenous Gastritis

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.

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Thank you, Anthony. Our health crisis has strengthened our faith and magnified our prayer lives. There are so many diseases out there with no known cause or cure. I stayed by my daughter's side all the times she spent in the hospital between the ages of 12 - 14, praying and researching, working with some of the best physicians in the country. I learned a few things. 1) This was for my daughter's good -- because of CG, God put on her heart to become a medical person, now she's a senior nursing student with a 4.0 GPA with compassion for patients only a former patient could have, she may go on to become a nurse practitioner! 2) I saw children in the pediatric ward that would make your heart break, one with parents who turned parenting over to grandma and the nurses, never visiting their child. I also saw people of faith experience miracles only God could perform, blowing their doctor's minds. 3) God took care of me, too, sending the right people to comfort and educate me, even helped me find the best coffee in the hospital! My daughter is not out of the woods yet, but I know Who has her back, and over 500 miles away, I'm comforted that He transcends time and distance. God bless you, too!

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Clean foods are foods we eat with no artificial coloring, no artificial flavoring, no hormones, etc. Buy clean pure foods. Read the ingredients on everything you buy and if you don't know the ingredients,avoid them like the black plague. Food manufacturers are protected by a LARGE LOBBY! They can poison us and get away with it.

Our Diet is destroying our GUT, which is our 2nd brain! It's worse now than when I was a kid. Find out what you can eat and not eat by contacting Dr. Fine, Enterolab. It's reliable! Have you noticed that young people are dying of cancers that only the elderly contracted. We are now eating poison. This is an autoimmune response too! I found out that I had Celiac Disease and Microscopic Colitis. All those years, since a baby of Celiac Disease destroyed my villi.MC was discovered in the 1980s and it killed my father. Many gastroenterologists are no help. They don't know what to do with MC. It helps to know your medical history, it's PARAMOUNT! I now know what destroyed my GI system and test results confirmed it. Contact Dr. Fine and tell him I told you to contact him. He has MC and knows the hell we are going through.

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Hello,
My daughter is 12 and has been diagnosed with Collagenous Gastritis 4 months ago (at 11 yrs old). Before diagnosis, she had suffered from anemia since 2019. Had to give a blood transfusion once and iron infusions very regularly as she was small and the doses were limited. As regularly as once a week to bring her ferritin and hemoglobin up. GI doctor initially could not find anything and it took a year and a half and 2 endoscopies/colonoscopies to find out the reason. I also got a second opinion on her pathology to confirm diagnosis.
She has been on PANTOPROZOLE for last 4 months, her hemoglobin and iron levels seem to be stable for last 6 weeks.

However, she gets extremely tired (shortness of breath) and complains of pounding headache and chest pain with physical activity, so much as few minutes of it. Just playing with her friends makes her tired. The symptoms pass after few minutes of rest. We have seen cardiologist completed echo cardiogram , EKG with no issues.

At the moment we are at the point of stress testing and getting appointments with pulmonologist. List of specialists never seems to end.

Did anyone else experience this? Would there be any improvement?

I am struggling to find information. She loves to dance and now not able to. Although she pushes herself to some extent.

As I found the group and read the comments, I realized I am not alone and there are others struggling.

Thank you all for suggestions and comments.

RJM

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Hello @rjm and welcome to Mayo Clinic Connect. I am glad that you found this patient support forum. As you probably know, Connect, is made up of patients and we are not medical professionals. We do, however, have other members who have discussed this disorder and I hope that some of them will respond to your questions.

I applaud you for wanting to have as much information as you can. As you probably know Collagenous Gastritis is a rare disorder, which probably explains the difficulty in getting a diagnosis for your daughter's health problems. I am glad to hear that her blood work is showing improvement.

To help you in your search for more information, here is a link to a Mayo Clinic video talking more about this rare condition. Just click on this link, https://www.youtube.com/watch?v=XY-0Fsv20sw.

Here is some information from the National Institute of Health website that might be helpful as well, https://rarediseases.info.nih.gov/diseases/10961/collagenous-gastritis/

From what you say your main concern right now is your daughter's energy level and stamina. Is that correct?

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Hello Teresa.
Thank you for the reply . Yes her energy levels and stamina are the main concern at the moment.

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@rjm, Does your doctor give you an indication as to whether or not this lack of stamina will be temporary?

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