Mayo Clinic Connect
I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
Liked by Teresa, Volunteer Mentor, jng123, jjdenaro, kellye5 ... see all
Hi, I’m a little late to the party! I’ve been diagnosed with collagenous gastritis for about 8 years now. It started with a small GI bleed, and then turned into intense stomach pain and aching. The stomach pain persisted for about a month until I was able to get diagnosed and put on Prilosec and antibiotics (they initally though it was H. Pylori). During that time period I lost a lot of weight because I wasn’t able to eat anything. I would just puke up what I ate. The medications started helping after not too long and my stomach pain actually went away almost completely. I didn’t have many problems with it until about 3 years ago, when it kicked into gear again. Lately it has progressed a lot. I used to be able to eat almost anything I wanted but now I can’t eat chocolate, tomato sauces (goodbye spaghetti), fruits, raw vegetables, red meats, greasy foods, or anything that has vinegar in it. Both Nexium and Prevacid worked briefly but then stopped working at all. I haven’t taken Prilosec in a long time because my doctors took me off of it since they were worried about it potentially affecting my bone density. Pepcid works, but barely. It keeps my symptoms at bay sometimes. On a typical day my symptoms only get worse in the evening, around 4-6pm. This is usually because the first dose of Pepcid wears off. When my stomach starts hurting, usually eating will make it a little better, or it will at least keep me from throwing up. I’ve gotten used to carrying emergency snacks around with me because I really don’t want to throw up in the middle of running errands. I should probably also mention that I have lupus and take prednisone and some other medications.
Have you had any luck with treating you symptoms? Has anything worked for you?
Collagenous gastritis is the pits and I hope we can all find some answers! It would be nice to live a more normal life again!
Liked by John, Volunteer Mentor
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.
Liked by John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
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:
@mommyof6, we look forward to getting to know you and your daughter; what concerns you the most about her condition?
Liked by John, Volunteer Mentor, Lisa Lucier
Today I was diagnosed with collagenous gastritis. Almost 12 years ago I was diagnosed with Celiac Disease, but had never seen a Dr. since then for it. I simply stopped eating gluten and started feeling better. I found my old biopsy results recently and realized that they were actually not conclusive for Celiac Disease and also suggested I could have autoimmune gastritis. Now living in NYC, I scheduled an appointment at Columbia University’s Celiac Disease Center and was scheduled for an endoscopy. The biopsy shows collagenous gastritis. The Dr. believes I haven’t had many issues with it because I’ve been on a gluten free diet, and furthermore, followed the autoimmune protocol from 2014-2016, and 80% of the time now. She said not much is known about it, but didn’t tell me that it is extremely rare. I still don’t fully understands what this means. Are there things I need to watch for? Do I need follow up appointments to monitor things? I was told I probably didn’t need a colonoscopy as I don’t have consistent diarrhea, but I said I’d like it done anyways. I guess I’m just feeling very overwhelmed as I don’t feel that I understand fully what this means, and as it’s rare, I’m guessing my Dr. probably doesn’t either. It does answer SO many issues I’ve had with my health especially when younger. And even now. I often feel like my stomach is full even if I haven’t eaten much and this will cause me to throw up. I always have low iron. As mentioned in other posts, there’s just not really any information out there. I’m hoping someone will be able to help me know what questions I should be asking my Dr, or as so little is known and there isn’t any treatment, are there even questions to ask? Thanks in advance!
Hello @tlcollazo1230, I would like to welcome you to Mayo Connect. This is a great place to ask questions and share information with other Connect members with similar health problems. It sounds like you are being proactive with your diet and I have to think that is playing a major part in how you are doing and controlling the symptoms of CG. Kanaaz’s (@kanaazpereira) post just above yours has some good information that may help you formulate some questions to ask your Doctor. I don’t have CG but have other autoimmune diseases so I’m not able to answer your question other than to suggest reading as much as you can about CG to become your own expert which will help you communicate better with your doctor.
Have you had a chance to read through the discussion? I know I’ve seen others that are in similar situations to you. The following National Institutes of Health page has a lot of information and other links that will help you learn more about Collagenous Gastritis:
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My daughter was recently diagnosed also. Was your daughter ever diagnosed with celiac? My daughter’s celiac markers are up, so she had an endoscopy. Didn’t confirm celiac or not, but they found CG. I’ve been trying to do as much research as I can, but doesn’t seem like there are a lot of successful treatments. Since it appears similar to autoimmune, we’re going to try diet change. We’ve pulled gluten, next dairy and plan to follow the Wahl’s Protocol. Fascinating work Dr Wahl’s is doing and some specialists believe good for all autoimmune disease. We figure it’s worth going for. Try to stay encouraged and connected. Never underestimate your God given Mother’s instinct!!! So grateful to find this group, hope you find it helpful too!
What concerns me is that there is no proven cure or treatment. Does this mean that she’ll live her life in pain and discomfort forever, or until a treatment is found? Or will it progress to something else? There’s just too many unknowns with this diagnosis that I as a parent am not okay with. Sure they are testing her for autoimmune diseases on top of all this, which have so far came back negative. But should I be hoping they find something else so that there is a possible cure? Im just really concerned, scared, and hate not having answers I guess.
Liked by Kanaaz Pereira, Connect Moderator
I was 18 when I was diagnosed and am now almost 20. I was anemic and had 2 iron infusions. My iron levels have remained good for over a year now. I have tried several different medications including budesonide and prednisone but the collagen is still there. I do not have celiac but I tried a gluten free diet but my symptoms did not change. I have many symptoms which do not seem to be gi related such as muscle aches, periods of weakness and shakiness and flushing in my face. I have been tested for autoimmune diseases but all the tests were negative. I get stomach aches several times a day usually, despite keeping to a very conservative diet. It seems as though I can eat something 10 times without a problem, then the 11th time it makes me feel terrible. The most difficult part of this condition is that it is so inconsistent and so very hard to describe to doctors.
Liked by mommyof6
I’m so sorry, @mommyof6; seeing your child struggle with a condition like this is hard. But “no proven cure or treatment” is not about giving up hope. By acknowledging your daughter’s illness, and by sharing her story on Connect, you have already made progress by increasing awareness about collagenous gastritis.
As parents, we would move mountains for our children if we had to; yet often, all that they may need is to know that you are present, you believe in them, and you will continue to ask questions – exactly as you are doing for your daughter.
@mommyof6, I sincerely encourage you to continue sharing, and let us know if you have any questions – the Connect community is listening.
Liked by John, Volunteer Mentor, mommyof6
So all of my daughters test came back negative for autoimmune diseases, no celiac, crohns, colitis or thyroid. Only thing that came back abnormal was her gastrins. Her GI doctor has tried to prescribe PPI medication however our insurance has refused them all. He has also tried to prescribe H2 meds, which were also denied. So after yet another Emergency room visit her hematologist has started another series of 6 iron infusions via IV. But I felt so hopeless. It seems like she is getting worse, so much so that she was throwing up blood, has lost her appetite completely, and is in constant pain. So I contacted a family member who suggested CBD oil regime. I figured it can’t make things any worse at this time, while we wait for a medication that our insurance will pay for. She’s been on a high CBD dose for 5 days now. She has no nausea, no throwing up, and she is eating. The stomach pain is still there but not as intense as it has been. She seems to believe it is helping with her anxiety as well. Could this be possible? I saw others have used the CBDs but is there any size effects long term or anything else I should worry about by allowing this treatment at this time???
Liked by Kanaaz Pereira, Connect Moderator, Jamie Q- collagenous gastritis patient
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?
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?!
@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.
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
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
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.
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