1. < Digestive Health
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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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

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mommyof6 | @mommyof6 | Dec 7, 2017
In reply to @kanaazpereira "Hello @mommyof6, As a parent, I can only imagine how difficult it must be to see..." + (show)
Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Hello @mommyof6,

As a parent, I can only imagine how difficult it must be to see one's child struggle with her health! I came across this lovely quote, which reflects your message about not giving up hope: "A mother always has to think twice...once for herself and once for her child."
Thank you for reaching out to Connect for support.

I'd like to introduce you to a few members in this discussion; please meet @epvb @guaranlam @calif @kacolton @mjgarr @knutrition @buckeyeliz. I'm certain that they, along with others, will share their insights and experiences with collagenous gastritis (CG).

I'd also encourage you to read these two published studies/reports about CG; the first link is a case report from Mayo Clinic's Department of Gastroenterology and Hepatology, Florida:
– http://acgcasereports.gi.org/files/2017/05/CG-CGCR170035.pdf
– https://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/114/6/271.pdf

@mommyof6, we look forward to getting to know you and your daughter; what concerns you the most about her condition?

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also does anyone know what we should expect next? Being the diagnosis is still so early. We've only had the colonscopy and endoscopy.... What can we expect next??? More tests? More procedures?

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mommyof6 | @mommyof6 | Dec 7, 2017
In reply to @buckeyeliz "Hello! Thank you all for posting in this page. I can not tell you how helpful..." + (show)
Profile picture for buckeyeliz @buckeyeliz

Hello! Thank you all for posting in this page. I can not tell you how helpful it is, because it doesn't seem like there is a lot of information out there. My daughter was just diagnosed with CG at 11 years of age. She really doesn't have a lot of symptoms and I'm so grateful. Seems like CG can be really painful.
She has some food sensitivities (pineapple). She was being tested because she is small for her age (7% in height and less than 1% now in weight and her bone age has not progressed in a year and is behind). Her celiac marker came back abnormal, so upon an endoscope and other labs, they have told us now she has CG and lactose intolerance. She has been taking Prilosec for about a week with no known help (although like I said no real GI symptoms most of the time). Anybody find help with acid blockers? They want to then scope her a ton in a few months (another endoscope, colonoscopy, and possible MRI). I really don't feel good about this and really would like to try some diet changes etc. Has anyone had a food emptying study done? Anyone else small in stature at this age? Any help or advice is most appreciated. 🙂 Can you tell I'm an overwhelmed mom?!

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@guaranlam How long have you been using the cbd oil? Is it a high dose? What exactly does it help with most for you? I just started a dose for my daughter and it seems to be helping a lot. But are there side effects of anything I should be aware of in the future? Any info would be helpful.

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Jamie Q- collagenous gastritis patient | @guaranlam | Dec 8, 2017
In reply to @buckeyeliz "Hello! Thank you all for posting in this page. I can not tell you how helpful..." + (show)
Profile picture for buckeyeliz @buckeyeliz

Hello! Thank you all for posting in this page. I can not tell you how helpful it is, because it doesn't seem like there is a lot of information out there. My daughter was just diagnosed with CG at 11 years of age. She really doesn't have a lot of symptoms and I'm so grateful. Seems like CG can be really painful.
She has some food sensitivities (pineapple). She was being tested because she is small for her age (7% in height and less than 1% now in weight and her bone age has not progressed in a year and is behind). Her celiac marker came back abnormal, so upon an endoscope and other labs, they have told us now she has CG and lactose intolerance. She has been taking Prilosec for about a week with no known help (although like I said no real GI symptoms most of the time). Anybody find help with acid blockers? They want to then scope her a ton in a few months (another endoscope, colonoscopy, and possible MRI). I really don't feel good about this and really would like to try some diet changes etc. Has anyone had a food emptying study done? Anyone else small in stature at this age? Any help or advice is most appreciated. 🙂 Can you tell I'm an overwhelmed mom?!

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Minnesota medical, the indigo one. With regular use helps with inflammation. Other types help with the nausea.
Up to .5 ml a few times a day

REPLY
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Jamie Q- collagenous gastritis patient | @guaranlam | Dec 8, 2017
In reply to @kanaazpereira "Hello @mommyof6, As a parent, I can only imagine how difficult it must be to see..." + (show)
Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Hello @mommyof6,

As a parent, I can only imagine how difficult it must be to see one's child struggle with her health! I came across this lovely quote, which reflects your message about not giving up hope: "A mother always has to think twice...once for herself and once for her child."
Thank you for reaching out to Connect for support.

I'd like to introduce you to a few members in this discussion; please meet @epvb @guaranlam @calif @kacolton @mjgarr @knutrition @buckeyeliz. I'm certain that they, along with others, will share their insights and experiences with collagenous gastritis (CG).

I'd also encourage you to read these two published studies/reports about CG; the first link is a case report from Mayo Clinic's Department of Gastroenterology and Hepatology, Florida:
– http://acgcasereports.gi.org/files/2017/05/CG-CGCR170035.pdf
– https://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/114/6/271.pdf

@mommyof6, we look forward to getting to know you and your daughter; what concerns you the most about her condition?

Jump to this post

No long term worries. It really does help..
I also have gin gins on hand to help with nausea or pain.. they are ginger chews and help when symptoms spike. They have them at Whole Foods or amazon. Also a good aloe Vera juice daily can help soothe the stomach lining.. helps me a lot . Herbal answers has a good raw one or Whole Foods has one that is less

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Profile picture for Jamie Q- collagenous gastritis patient
Jamie Q- collagenous gastritis patient | @guaranlam | Dec 8, 2017
In reply to @kanaazpereira "Hello @mommyof6, As a parent, I can only imagine how difficult it must be to see..." + (show)
Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Hello @mommyof6,

As a parent, I can only imagine how difficult it must be to see one's child struggle with her health! I came across this lovely quote, which reflects your message about not giving up hope: "A mother always has to think twice...once for herself and once for her child."
Thank you for reaching out to Connect for support.

I'd like to introduce you to a few members in this discussion; please meet @epvb @guaranlam @calif @kacolton @mjgarr @knutrition @buckeyeliz. I'm certain that they, along with others, will share their insights and experiences with collagenous gastritis (CG).

I'd also encourage you to read these two published studies/reports about CG; the first link is a case report from Mayo Clinic's Department of Gastroenterology and Hepatology, Florida:
– http://acgcasereports.gi.org/files/2017/05/CG-CGCR170035.pdf
– https://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/114/6/271.pdf

@mommyof6, we look forward to getting to know you and your daughter; what concerns you the most about her condition?

Jump to this post

Mine ended after diagnosis and steroid prescription. Check back in a year.. trying homeopathy now. Diet and research to help naturally has been most effective.

REPLY
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calif | @calif | Dec 8, 2017
In reply to @kanaazpereira "Hello @mommyof6, As a parent, I can only imagine how difficult it must be to see..." + (show)
Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Hello @mommyof6,

As a parent, I can only imagine how difficult it must be to see one's child struggle with her health! I came across this lovely quote, which reflects your message about not giving up hope: "A mother always has to think twice...once for herself and once for her child."
Thank you for reaching out to Connect for support.

I'd like to introduce you to a few members in this discussion; please meet @epvb @guaranlam @calif @kacolton @mjgarr @knutrition @buckeyeliz. I'm certain that they, along with others, will share their insights and experiences with collagenous gastritis (CG).

I'd also encourage you to read these two published studies/reports about CG; the first link is a case report from Mayo Clinic's Department of Gastroenterology and Hepatology, Florida:
– http://acgcasereports.gi.org/files/2017/05/CG-CGCR170035.pdf
– https://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/114/6/271.pdf

@mommyof6, we look forward to getting to know you and your daughter; what concerns you the most about her condition?

Jump to this post

Hi, I'm so sorry for what you are going through with your daughter. I was diagnosed as an adult, and I don't know if there are significant differences between adult and juvenile CG. You may want to look into finding a doctor that has experience with CG in adolescents since I believe they are out there -I have heard CG is more common in younger people. That being said, I also have tested negative for all autoimmune diseases including all those you listed. While I did have a rough time several years ago leading to my diagnosis, including some of your daughter's symptoms, hospitalizations and blood transfusions, I've been in excellent health for many years and I live a completely normal life raising kids, working, and feeling totally fine the vast majority of the time. I know this does vary of course by individual, but I've found most helpful: a clean diet (unprocessed, lots of fruit/vegetables/whole grains) and trying to reduce stress. I occasionally take Protonix to control symptoms if they flare up. I haven't needed any follow up treatment for many years (I visit my gastroenterologist yearly just to check in) and I've never needed a colonoscopy. Obviously this doesn't mean everyone has the same experience, but I want to give you hope that the diagnosis doesn't mean she'll always have the symptoms she is now experiencing. As a mom myself, my heart is with you.

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e | @epvb | Dec 9, 2017
In reply to @kanaazpereira "Hello @mommyof6, As a parent, I can only imagine how difficult it must be to see..." + (show)
Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Hello @mommyof6,

As a parent, I can only imagine how difficult it must be to see one's child struggle with her health! I came across this lovely quote, which reflects your message about not giving up hope: "A mother always has to think twice...once for herself and once for her child."
Thank you for reaching out to Connect for support.

I'd like to introduce you to a few members in this discussion; please meet @epvb @guaranlam @calif @kacolton @mjgarr @knutrition @buckeyeliz. I'm certain that they, along with others, will share their insights and experiences with collagenous gastritis (CG).

I'd also encourage you to read these two published studies/reports about CG; the first link is a case report from Mayo Clinic's Department of Gastroenterology and Hepatology, Florida:
– http://acgcasereports.gi.org/files/2017/05/CG-CGCR170035.pdf
– https://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/114/6/271.pdf

@mommyof6, we look forward to getting to know you and your daughter; what concerns you the most about her condition?

Jump to this post

Could you please tell me specifically what symptoms the ginger chew help? Also, what kind of pain does the aloe vera juice help with? Is it stomach ache, nausea, cramping pain...etc? Thank you.

REPLY
Profile picture for Jamie Q- collagenous gastritis patient
Jamie Q- collagenous gastritis patient | @guaranlam | Dec 9, 2017
In reply to @kanaazpereira "Hello @mommyof6, As a parent, I can only imagine how difficult it must be to see..." + (show)
Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Hello @mommyof6,

As a parent, I can only imagine how difficult it must be to see one's child struggle with her health! I came across this lovely quote, which reflects your message about not giving up hope: "A mother always has to think twice...once for herself and once for her child."
Thank you for reaching out to Connect for support.

I'd like to introduce you to a few members in this discussion; please meet @epvb @guaranlam @calif @kacolton @mjgarr @knutrition @buckeyeliz. I'm certain that they, along with others, will share their insights and experiences with collagenous gastritis (CG).

I'd also encourage you to read these two published studies/reports about CG; the first link is a case report from Mayo Clinic's Department of Gastroenterology and Hepatology, Florida:
– http://acgcasereports.gi.org/files/2017/05/CG-CGCR170035.pdf
– https://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/114/6/271.pdf

@mommyof6, we look forward to getting to know you and your daughter; what concerns you the most about her condition?

Jump to this post

Gin gins I take with me and have on empty stomach because I feel sick.. anytime stomach is upset ginger and chamomile help.. same concept with aloe, aloe soothes stomach lining. Helps me with several forms of upset stomach.. I take a shot a couple times a day. Take on a not full tummy to ingest fully

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gracief | @gracief | Dec 10, 2017

I was diagnosed with Collogenous Gastritis earlier this year when I was 14. Blood test results came back finding CG. To help, I have a gluten free diet. Despite going on a GF Diet, it hasn't helped me get through stomach pains, constipation, heartburn and chest indigestion. I constantly feel sick during meals and afterwards as well. I never feel good in the mornings and during the day. There is no cure for this disease but all I can say is go on a GF diet and take MYLANTA to relieve chest indigestion. If you have anything you think would help, I would love to hear it.
Thanks.

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 10, 2017

Hello Gracie (@gracief), welcome to Mayo Connect and thank you for sharing your story. I'm really glad you found Connect and that you are proactive about finding something to help. If you haven't already read through this discussion I would recommend doing it. Here's a link on the National Institutes of Health's website on CG:
https://rarediseases.info.nih.gov/diseases/10961/collagenous-gastritis
I am tagging Connect members in this discussion who have discussed dietary changes they've made to see if they have any suggestions. @calif, @guaranlam, @galy, @mjgarr, @kanaazpereira do you have any suggestions for @gracief ?

Gracie, are there any foods that make the pain worse?

John

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