Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

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

@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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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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@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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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.

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@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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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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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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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#diseaseTreatmentSection
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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Hi John,
Fatty and oily foods make me feel sick. Potatoes as well have caused me painful chest indigestion. Thanks for replying to me so quickly.

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Brie cheese also causes really bad chest indigestion as well for me.

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@gracief have your parents thought about getting a second opinion on your diagnosis or talked with the doctors about still having the symptoms you are having? I have no medical knowledge or experience but I would want to explore every avenue to find something that helps with the symptoms you are experiencing.

Another section of Connect to explore are the Pages. There is a Gastroenterology & GI Surgery Page where you can read shared experiences, learn about clinical trials and up-to-date research, and find resources for gastroenterology. If you click All categories and select Recipes there are some really good gluten free recipes that may help.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
Hoping you find some answers.

John

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@johnbishop

@gracief have your parents thought about getting a second opinion on your diagnosis or talked with the doctors about still having the symptoms you are having? I have no medical knowledge or experience but I would want to explore every avenue to find something that helps with the symptoms you are experiencing.

Another section of Connect to explore are the Pages. There is a Gastroenterology & GI Surgery Page where you can read shared experiences, learn about clinical trials and up-to-date research, and find resources for gastroenterology. If you click All categories and select Recipes there are some really good gluten free recipes that may help.
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
Hoping you find some answers.

John

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@gracief I found a post earlier in this discussion between @kanaazpereira and @calif that may be of benefit to you. The discussion starts here:
https://connect.mayoclinic.org/comment/73213/bookmark/?ajax_hook=action&_wpnonce=0de2841ca1
John

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Hi @gracief,

I’d like to add my welcome to @johnbishop‘s and, before anything else, want to let you know that your dedication to get answers about your health is admirable – at such a young age! Kudos!

While we wait for some of the members to join in, I’d like to introduce you to a few others who’ve shared some great suggestions. Please meet
@epvb @kacolton @ibrown51484 @mindi, who’ve written about Budesonide (a steroid that reduces inflammation)
@nando73 @buckeyeliz @mommyof6 @looloo @jjdenaro, who have all shared their daughters’ experience with collagenous gastritis
@jng123 @guaranlam @bakingchick have shared what works/what doesn’t with regard to diet

You mentioned being on a gluten free diet, and I found this published case report that might interest you, and others in this group as well:
“Successful Treatment of Collagenous Gastritis in a Child With a Gluten-Free Diet” https://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/114/6/271.pdf

@gracief, although there may be no cure (yet), there is always hope, which so many of your fellow Connect members share, and which makes these difficult journeys so much easier, right?

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Has anyone tried pentasa for symptoms of collagenous gastritis? I am about to begin taking it. Insurance coverage was very hard to get but just got it. Took price down from $1700 to $85 for month’s supply. Budesonide and prednisone have not worked with me. Thank you.

Liked by jng123

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@jng123

Hi everyone, I am SO glad to have found this page and everyones responses! There is next to NO research out there or people that have CG so this is SO great and comforting to find!
I am an odd CG case (but aren’t we all?), I am right between the peds and adult category- since I am 19 I showed symptoms of both categories. I was diagnosed with CG last year (19 years old). But I had gone through millions of tests and endoscopy, colonoscopys etc, since the age of 15. It was not until I was at college and my ankles and lower legs got extremely swollen that I went to the hospital and underwent blood work right away. That was when they determined I was severally anemic (needed 4 blood transfusions and 2 iron transfusions right away). They also realized I was internally bleeding. So I got an endoscopy and that’s when the doc searched and searched for something wrong, and when he went a little further he realized the collagen as well as the lining of my stomach was frayed and would shed off when he tapped it with the endoscope. I was in the hospital for a week, and then recovery was long and slow since I had to build back up all my iron, blood and other levels as well as endurance. I was put on acid blockers, CARAFATE, PROTONIX and ferrous sulfate. As well as a recommended iron rich healthy diet (but I am an extremely healthy eater and very active to begin with). I noticed NO help with any of the meds EXCEPT the ferrous sulfate because that helped build back up my iron- however I stopped taking it at my own decision because I felt myself getting hot and other side effects of too much iron (yes, it is a thing!!!). And long behold my next blood work test showed more than enough iron and everything looked good. I have not gotten an endoscopy since last year, just blood work through out the year. However, I believe I am relapsing because I am gaining all the symptoms I had prior to my diagnosis. These include, extreme fatigue, slower reactions, insanely painful abdominal pain, sensitive to every food, bloating, stomach gurgling, daily loose stools, waking up with very puffy eyelids (ANYONE ELSE??), no motivation to work out, nausea, stomach cramps and my legs and feet fall asleep a great deal. Acidic foods, dairy, greedy foods, alcohol etc. destroy my insides…
I am meeting with my doctor (the one who diagnosed me with CG) next week and am going to bring MANY questions you all proposed in here! Such as gut bacteria’s role, herbal supplements to look into, autoimmune diseases and TRY to establish an effective treatment plan. I do believe DIET is huge in CG, but I have always ate healthy (very healthy) and extremely active. I do limit gluten, dairy and never eat friend or greasy foods. But there has to be more than a healthy diet to help all of us not go through these insanely painful flares/relapses/food intolerances. Even when I am eating healthy I go through these painful symptoms! CASE studies SHOULD be done on us and SOON – please! I am a college student who HATES CG and will do ANYTHING and EVERYTHING to help discover more about it. Let me know if anyone has any other questions or ideas or similar situations!

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Hi @epvb I appreciate your response and am so interested in hearing more about your treatments pros and cons! I am currently being treated by an Upper GI Doc (who dignosed me). We seem to have very similar symptoms. I currently have no iron again (my level is a 4)…..So I’m wondering why iron is depleting / where is it going in my body? I am also low in protein.
I am a HEALTHY nutritional eater so this all doesn’t add up. I haven’t been able to commit to a GF diet – How long were you GF for???? So many foods cause me to be super bloated, cramp, stomach bubbling/spazzms. Expecially chocolate 🙁 Are you Dairy free? I did try being vegan for a little bit (2 months) and I experienced NO stomach PAIN or Gas or any of the issues!!
Currently taking no meds except beginning iron supplemens. The main thing we are dealing with is the swelling in my ankles/ lower legs…….Wondering now if this is a heart condition, or Kidney issue?….. (I am not over weight & I am active so swelling doesn’t make any sense either)
Have you thought of a holistic nateopathic doctor?

Liked by jng123

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Haven’t- but review the drug and did some research! Please keep us updated! Did your doctor come up with the idea to put you on this??

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@mommyof6

My daughter is 17 and was just diagnosed with Collagenous gastritis but it is only in her stomach, no other organs at this time. She has low iron and low hemoglobin, very painful stomach aches, and all the effects of the low iron like fainting, dizziness, fatigue, and just lack of all energy. We first found out her stomach problems in 2013, but the doctors couldn’t figure it out until 2 days ago. After a series of blood tests, iron infusions, and different biopsies. Finally the colonoscopy and endonoscopy found the answers 4 years later. She seems to be handling that there is no real cure or treatment, however I am not. I want her to live a full life. I have so many questions but limited answers. So if anyone would care to share your experiences with me, treatments you’ve tried, etc we would be forever grateful.

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You might track whether or not there are SULPHITES in what you are eating. I had similar problems and finally traced it to sulphites. Just stumbled across it. Here are some examples: chicken – packaged chicken in the grocery store has sulphites in the little pad that is under the actual chicken and there is enough to make me sick. Organic chicken does not and i can eat organic chicken without a problem. Another example: lettuce in a package has sulphites in the bag and i get sick. Lettuce that i wash myself, no problem. Beef, by law, can not have sulphites added so i can always fall back on a hamburger or steak in a restaurant.

So there is some of what i know. Good luck. Let me know if i can help. (write me directly as I do not follow this thread)

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@jng123

Haven’t- but review the drug and did some research! Please keep us updated! Did your doctor come up with the idea to put you on this??

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Yes, pentasa prescribed by dr. After budesonide and prednisone failed.

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