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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.
Replies to "My daughter is 17 and was just diagnosed with Collagenous gastritis but it is only in..."
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.
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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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!