Hi there. Nice to meet you yet so sorry for the circumstances. I’m so sorry to hear how you are struggling with this. My 13yo daughter was just diagnosed with CG. She lives with constant stomach pain, lethargy, yet her iron levels are normal. We’ve not tried any meds or dietary changes yet. She also has a slightly enlarged liver & bulky spleen. I’m wondering if any of you have had either of these diagnosed? Curious to know if there is a relatoinship between the two.
I am SO interested in the study results of the similar gut bacteria that you mention. I would love if you could send me the links to the forum & the medical study. As there are so few of us, I feel that I want to collate as much individual case info as possible. A survey of sorts, that may be presented to all Gastroenterology/Medical/Naturopathy associatons for consideration to prompt further study. I notice CG is not isolated to a particular part of the world (we are in Australia) how good would it be to get all countries involved in trying to find a cause/cure?
Any ideas on how to start our own personal patient study/survey would be great! Let’s beat this thing together.