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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wendy2001 | @wendy2001 | Feb 20, 2018
In reply to @epvb "@wendy2001, I am a 20 year old who was diagnosed about 1 1/2 years ago. I..." + (show)
@epvb

@wendy2001, I am a 20 year old who was diagnosed about 1 1/2 years ago. I have tried many steroids and other medications but have not improved. I am being treated at Mayo Clinic. I have not found any foods which aggravate my symptoms; they occur without warning even with simple foods. I have tried gluten free but found no improvement. I am not familiar with the GAPS diet. I wish you luck with it and am interested to hear how he does with it. I find it amazing that people can be diagnosed with the same condition yet have such different symptoms. I feel sick a lot of the time as well; stomach upset, pressure along digestive tract and heartburn. I also have periods of extreme exhaustion and loss of energy. Have you found anything that helps the weakness and lack of energy?

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Yes at one point his vit d was at a 1

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 20, 2018
In reply to @epvb "@wendy2001, I am a 20 year old who was diagnosed about 1 1/2 years ago. I..." + (show)
@epvb

@wendy2001, I am a 20 year old who was diagnosed about 1 1/2 years ago. I have tried many steroids and other medications but have not improved. I am being treated at Mayo Clinic. I have not found any foods which aggravate my symptoms; they occur without warning even with simple foods. I have tried gluten free but found no improvement. I am not familiar with the GAPS diet. I wish you luck with it and am interested to hear how he does with it. I find it amazing that people can be diagnosed with the same condition yet have such different symptoms. I feel sick a lot of the time as well; stomach upset, pressure along digestive tract and heartburn. I also have periods of extreme exhaustion and loss of energy. Have you found anything that helps the weakness and lack of energy?

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Hi Wendy, your reply was blocked because your email address was included in your reply. Connect is a public website, so we recommend that you don't share personal contact information like phone numbers, email or mailing address. Do you mind posting your reply to Zaroga again?

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wendy2001 | @wendy2001 | Feb 20, 2018
In reply to @epvb "@wendy2001, I am a 20 year old who was diagnosed about 1 1/2 years ago. I..." + (show)
@epvb

@wendy2001, I am a 20 year old who was diagnosed about 1 1/2 years ago. I have tried many steroids and other medications but have not improved. I am being treated at Mayo Clinic. I have not found any foods which aggravate my symptoms; they occur without warning even with simple foods. I have tried gluten free but found no improvement. I am not familiar with the GAPS diet. I wish you luck with it and am interested to hear how he does with it. I find it amazing that people can be diagnosed with the same condition yet have such different symptoms. I feel sick a lot of the time as well; stomach upset, pressure along digestive tract and heartburn. I also have periods of extreme exhaustion and loss of energy. Have you found anything that helps the weakness and lack of energy?

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All good

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Mindi | @mindi | Feb 20, 2018
In reply to @wendy2001 "Hi. I have a 17 yr old son that was diagnosed with collagenous gastritis 2 yrs..." + (show)
@wendy2001

Hi. I have a 17 yr old son that was diagnosed with collagenous gastritis 2 yrs ago. He had no pain but totally exhausted and no energy, lots of nausea, felt sick all of the time. We went to mass general in Boston. Dr Winter is one of the only doctors that has done research on it. My son could not take steroids or supplements. Just made him sick. We have done a lot with nutrition. Going off gluten, dairy, egg, soy helped the stomach stop bleeding. Now we are doing GAPS which is similar to specific carbohydrate diet. Basically you are eating easily digestible foods. He hasn’t been able to absorb nutrients. We have also had a great psychologist. Would be happy to discuss.

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wendy2001 Sorry to hear about your son. In the list of symptoms you did not mention anaemia or bleeding but you say your son fatigued Did he show low iron stores and Hb at time?
If so, was he treated with iron orally or did he have iron infusion?
Change of diet may have improved his iron stores.
Thats great if his symptoms have eased with change of diet. Did the Specialist Gastroenterologist recommend gluten free?
My experience and from what have read few specialists recommend changing to gluten free.
For myself gluten free and changes to diet has not reduced symptoms especially with stomach bleeds.
But then many studies say with auto immune issues getting off gluten helps and is best.

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wendy2001 | @wendy2001 | Feb 21, 2018
In reply to @wendy2001 "Hi. I have a 17 yr old son that was diagnosed with collagenous gastritis 2 yrs..." + (show)
@wendy2001

Hi. I have a 17 yr old son that was diagnosed with collagenous gastritis 2 yrs ago. He had no pain but totally exhausted and no energy, lots of nausea, felt sick all of the time. We went to mass general in Boston. Dr Winter is one of the only doctors that has done research on it. My son could not take steroids or supplements. Just made him sick. We have done a lot with nutrition. Going off gluten, dairy, egg, soy helped the stomach stop bleeding. Now we are doing GAPS which is similar to specific carbohydrate diet. Basically you are eating easily digestible foods. He hasn’t been able to absorb nutrients. We have also had a great psychologist. Would be happy to discuss.

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@mindi, we only found bleeding because dermatology assistant thought he looked bad and asked if we had checked his stool. Sure enough - occult blood. Went to gi and had endoscopy/colonoscopy. Anemia and low iron stores. Pediatric gi gave no direction on nutrition and only gave meds which were terrible. Researched nutrition, etc on my own. Did Lon lasting fe for a while. With nutrition, finally grew.

Seems to be in same family as crohns, etc in my opinion. Just stomach va colon. Working with naturopath too.

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 21, 2018

Hi @wendy2001,

I wanted to mention that you may also wish to view videos and posts by Mayo Clinic gastroenterologists on the "Gastroenterology & GI Surgery Page" on Connect: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/

Here are two, about the impact of 'Specific Diets' on inflammatory bowel disease (IBD), celiac disease, and related conditions:
– https://connect.mayoclinic.org/newsfeed-post/ccfa-to-study-impact-of-specific-diets-on-crohns-disease-1/
– https://connect.mayoclinic.org/newsfeed-post/specific-carbohydrate-diet-for-pediatric-ibd-1/

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sbch | @sbch | Feb 23, 2018
In reply to @kanaazpereira "Welcome to Connect, @sbch. Thank you so much for sharing some great insights and information. Sorry..." + (show)
@kanaazpereira

Welcome to Connect, @sbch. Thank you so much for sharing some great insights and information. Sorry to learn about your daughter, but glad that she has found success with dexilant. In fact, @jwicks also posted about a similar outcome with dexilant.

I'd also like to mention that the Gastroenterology & GI Surgery Page on Connect, has some very informative videos by Mayo Clinic experts on a celiac disease and IBD (Crohn's and ulcerative colitis): https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/

So what are the next steps for your daughter, @sbch?

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Next steps: as far as we can tell she will stay on dexilant, never touch alcohol and rarely caffeine, and just keep eating. She began as a late pediatric case and is now transitioning past pediatric so we can expect changes at some point, but she is still with the same doctor, a pediatric gastroenterologist who seems to know more about this and related conditions that most do.

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wendy2001 | @wendy2001 | Feb 23, 2018
In reply to @kanaazpereira "Welcome to Connect, @sbch. Thank you so much for sharing some great insights and information. Sorry..." + (show)
@kanaazpereira

Welcome to Connect, @sbch. Thank you so much for sharing some great insights and information. Sorry to learn about your daughter, but glad that she has found success with dexilant. In fact, @jwicks also posted about a similar outcome with dexilant.

I'd also like to mention that the Gastroenterology & GI Surgery Page on Connect, has some very informative videos by Mayo Clinic experts on a celiac disease and IBD (Crohn's and ulcerative colitis): https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/

So what are the next steps for your daughter, @sbch?

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@sbch – I agree with you on how you are classifying this.  My other child is not celiac but can have very little gluten.  Otherwise, she will have stomach cramps and throw up.  I tell people it’s crohn’s of the stomach.  Seems to be the only way others understand.   I almost look forward to my son aging out of pediatric gi.  We live in a big city but the pediatric gi’s know very little about cg. 

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ZeeGee | @fourof5zs | Feb 24, 2018

@wendy2001 When the stomach does not process the nutrients you can feel tired. i tried the high dose of vitamin d and it made all my muscles ache much like the flu. Now I take a multivitamin that has 600 IU of d3. I also take a 400 IU d3 gel pearl and am on the low range still. I tried increasing and the muscle aches come. My calcium is fine, but magnesium was low too. My family dr does not check it unless I ask. It is best to get vitamins from food but vitamin d is about impossible to get enough from food and sun. I had a discussion with a dietician one time, but I have seversl stomach issues. Some require high fiber and some low fiber and I require soft, easily digestable foods. I left with “just do the best you can”. Some days I can eat something and the next time it won't go down or makes me nauseous. Just have to keep trying best I can. Many have an iron deficiency and iron in vitamin form or by infusion is needed. Energy can also be gained by simply moving more. Walking is excellent... even if they are 5-10 minute walks several times a day.

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wendy2001 | @wendy2001 | Feb 24, 2018

He has taken 600 of D and fe long lasting. They both help some.

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