1. < Digestive Health

Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

I was recently diagnosed with collagenous gastritis which is very rare. I'm looking for anyone else who has similar diagnosis.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 25, 2021
In reply to @rjm "No not really … we don’t even know the reason for her fatigue. And doctor did..." + (show)
@rjm

No not really … we don’t even know the reason for her fatigue. And doctor did not connect it to CG. We are ruling out other issues at the moment. Like cardiology and pulmonology …

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The "ruling out" process does take time, @rjm. I do hope that an answer is found soon. Fatigue has to be difficult for a young person.

How is your daughter coping with this change in stamina? Will you keep in touch and let us know how the process is going?

REPLY
barney5 | @barney5 | Feb 19, 2022

Our 31-year-old son was recently diagnosed with Callogeneous Gastritis, and also with a thickened and bowed mitral valve. His cardiologist says his mitral valve may or may not be connected to the thick lining in his stomach. The doctor wants him to have genetic testing for Marfan syndrome, as well. Our son was also, unofficially, diagnosed with Asperger's when he was about 3 years old. Our gastroenterologist is referring our son to the Mayo Clinic in Rochester. The gastroenterologists here in Idaho have never seen this disease before. We are hoping to get in to see Dr. Murray, as well as a cardiologist and whoever would do the testing for Marfan syndrome. Just wondering if any of the rest of you have heart issues or Marfan syndrome, or if any of you are on the autism spectrum. What, if any, other issues are you seeing with the gasstritis?

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1 reply
laurchaser | @laurchaser | Aug 11, 2022
In reply to @mommyof6 "well here I am again. About 4 months into my daughter diagnosis and still nothing to..." + (show)
@mommyof6

well here I am again. About 4 months into my daughter diagnosis and still nothing to help. Any one know of any doctors with some knowledge of Collagenous gastritis in the west coast??? My daughters gi seems to know nothing and keeps prescribing meds that make things worse where she loses her appetite completely or is constantly throwing up. Only thing we have found to help ease a little bit of the pain and stop the nausea is the cbd oils. We are headed to san Francisco in hopes that the head of gi there has more knowledge then our gi here in Nevada. Kinda like a second opinion. We finally got her iron anemia under control (at least for now) until her stomach bleeds it all out again (we give it about a month) but I hate seeing my child so miserable.

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Hi @mommyof6, my son was diagnosed one month ago and we live in the Bay Area. We have a GI at Stanford, but we are looking to fly to Boston for their specialist. Ours has him on an elimination diet, Prilosec twice a day, and a high-dose iron supplement. He was severely anemic as well, but the oral iron allowed his body to get to a low-normal range (although his stomach still shows bleeding). I'm sorry your daughter is going through this. Please let me know if you find anyone great out here.

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1 reply
ru4tarheels | @ru4tarheels | Oct 13, 2022
In reply to @laurchaser "Hi @mommyof6, my son was diagnosed one month ago and we live in the Bay Area...." + (show)
@laurchaser

Hi @mommyof6, my son was diagnosed one month ago and we live in the Bay Area. We have a GI at Stanford, but we are looking to fly to Boston for their specialist. Ours has him on an elimination diet, Prilosec twice a day, and a high-dose iron supplement. He was severely anemic as well, but the oral iron allowed his body to get to a low-normal range (although his stomach still shows bleeding). I'm sorry your daughter is going through this. Please let me know if you find anyone great out here.

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I was diagnosed with collagenous gastritis 3-4 years ago and continue to fly to Boston from the Southeast US at least once a year. Working with my doctor, I have found a treatment that works well and he thinks through every treatment. Definitely worth a visit to see the specialist. Before seeing him, I had a hemoglobin that got down to 4 once and had more frequent episodes. I will say, my disease seems to present differently than most (massive and unpredictable upper GI bleeds so my treatment is likely much different than others).

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2 replies
lauribeth | @lauribeth | Nov 2, 2022
In reply to @ru4tarheels "I was diagnosed with collagenous gastritis 3-4 years ago and continue to fly to Boston from..." + (show)
@ru4tarheels

I was diagnosed with collagenous gastritis 3-4 years ago and continue to fly to Boston from the Southeast US at least once a year. Working with my doctor, I have found a treatment that works well and he thinks through every treatment. Definitely worth a visit to see the specialist. Before seeing him, I had a hemoglobin that got down to 4 once and had more frequent episodes. I will say, my disease seems to present differently than most (massive and unpredictable upper GI bleeds so my treatment is likely much different than others).

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Did they say dieulefoy lesions??
Do you also have Ehlers Danlos?

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1 reply
lauribeth | @lauribeth | Nov 2, 2022
In reply to @barney5 "Our 31-year-old son was recently diagnosed with Callogeneous Gastritis, and also with a thickened and bowed..." + (show)
@barney5

Our 31-year-old son was recently diagnosed with Callogeneous Gastritis, and also with a thickened and bowed mitral valve. His cardiologist says his mitral valve may or may not be connected to the thick lining in his stomach. The doctor wants him to have genetic testing for Marfan syndrome, as well. Our son was also, unofficially, diagnosed with Asperger's when he was about 3 years old. Our gastroenterologist is referring our son to the Mayo Clinic in Rochester. The gastroenterologists here in Idaho have never seen this disease before. We are hoping to get in to see Dr. Murray, as well as a cardiologist and whoever would do the testing for Marfan syndrome. Just wondering if any of the rest of you have heart issues or Marfan syndrome, or if any of you are on the autism spectrum. What, if any, other issues are you seeing with the gasstritis?

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Not marfan -but Ehlers Danlos

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lauribeth | @lauribeth | Nov 2, 2022
In reply to @rjm "No not really … we don’t even know the reason for her fatigue. And doctor did..." + (show)
@rjm

No not really … we don’t even know the reason for her fatigue. And doctor did not connect it to CG. We are ruling out other issues at the moment. Like cardiology and pulmonology …

Jump to this post

This is infuriating- how can stomach pain, nausea and vomiting or just being afraid to eat not cause fatigue? Doctors are not thinking -

REPLY
lauribeth | @lauribeth | Nov 2, 2022
In reply to @rjm "Hello, My daughter is 12 and has been diagnosed with Collagenous Gastritis 4 months ago (at..." + (show)
@rjm

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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Hi! Was she tested for Ehlers Danlos or Dysautonomia??

REPLY
lodefam | @lodefam | Jan 26, 2023
In reply to @hhp3 "Hello, I was diagnosed with CG two years ago. I immediately made several changes including switching..." + (show)
@hhp3

Hello, I was diagnosed with CG two years ago. I immediately made several changes including switching to a gluten free diet, I was instructed to go off my SSRI (Lexapro) because my GI Dr. Said there could be a correlation (anyone else aware of this?), I went off of my Prilosec, and have been taking a daily probiotic. I have been fairly symptom free since making these changes, with the occasional burning and bloating, however I just had my two year EGD yesterday and it showed no changes. I am pretty bummed/ worried because I am currently not taking anything medication wise to actually address this. My stomach issues started at a young age, having a small ulcer when I was 7/8. I also have Hashimotos which is an autoimmune thyroid disease. My Dr is unaware of any increased risk with stomach cancer related to CG, but does anyone have any information on this? I am super worried.

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My son was dx with CG a few years ago and now has malt lymphoma. Providers feel the chronic inflammation from CG caused the lymphoma.

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chiinita2 | @chiinita2 | Feb 12, 2023

My daughter got diagnosed with collogrnous gastritis and she has had Gi bleeding . She has ended in thr hospital due to her hemoglobin levels dropping so low it has been scary. She has had colonoscpies, endoscopy, Merkle scan, laprascopy done but they have not been able to locate where it comes from. She has to take iron everyday, has had blood transfusion and recently started with iron infusion. We have worked on changing her diet but sadly we ended up back in the hospital. Any help or advice someone can bring would be so much appreciated. My poor daughter has gone through alot.

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