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Nov 1, 2018 · Collagenous Gastritis in Digestive Health

its been while since my last post. We have seen several gi doctors but my daughter has yet to find relief in anything. She was on budesonide, but took herself off of it because it was making her sicker. She still has low iron (anemia) even after 3 sets of iron infusions, usually 5 every 2 weeks, then is good for about 3 months before we are back. She went gluten free and it doesn't seem to have changed the way she feels. Everything makes her sick or puts her in the bathroom a few minutes later. She pretty much given up hope and just wants to continue as long as she can hopefully without stomach bleeds. But me being the curious mom that I am, what are the odds of her ever getting pregnant? Cause I know that was one of her dreams to become a mom, but is it possible of she gives up on treatments? Or could it be possible if she follows treatments? Any info would be greatly appreciated.

Mar 8, 2018 · Collagenous Gastritis in Digestive Health

My daughter has had symptoms for 5 years now but was officially diagnosed in november with cg. She has tried 5-6 different medications, gluten free, and nothing helps her. She has nausea, throwing up, body aches, iron deficiency anemia, iron infusions, light headessness, anxiety, depression, and recently started brushing easily and has bruises all up her legs, hip, and lower back. All her other tests came back negative or normal for all other autoimmune and other known diseases. But no gi doctors in our area are familiar with cg and just kinda throw their hands up in defeat. So idk what else to do. Getting to the mayo clinic is almost impossible being low income and having 6 children. So I just research, read experiences from others, and pray for some help or treatment one day.

Mar 8, 2018 · Collagenous Gastritis in Digestive Health

We were told that the lack of energy and exhaustion has nothing to do with cg. Have you had your iron checked recently? Cause that can cause the lack of energy and exhaustion, and something not obvious to see without blood draws.

Mar 8, 2018 · Collagenous Gastritis in Digestive Health

well here I am again. About 4 months into my daughter diagnosis and still nothing to help. Any one know of any doctors with some knowledge of Collagenous gastritis in the west coast??? My daughters gi seems to know nothing and keeps prescribing meds that make things worse where she loses her appetite completely or is constantly throwing up. Only thing we have found to help ease a little bit of the pain and stop the nausea is the cbd oils. We are headed to san Francisco in hopes that the head of gi there has more knowledge then our gi here in Nevada. Kinda like a second opinion. We finally got her iron anemia under control (at least for now) until her stomach bleeds it all out again (we give it about a month) but I hate seeing my child so miserable.

Dec 7, 2017 · Collagenous Gastritis in Digestive Health

@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.

Dec 7, 2017 · Collagenous Gastritis in Digestive Health

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?

Dec 7, 2017 · Collagenous Gastritis in Digestive Health

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???

Nov 22, 2017 · Collagenous Gastritis in Digestive Health

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.