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.

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.

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???

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?

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.

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.

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.

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