C3GN?

[Lalmam]

Hi,My daughter has been diagnosed with C3GN. She had a biopsy in January and is complaining of constant pain in her biopsy sight. She is very sporty and active and I'm wondering if anyone else has had this and could u advise what I can do to help her.

[morikaren]

Hello!

I was officially diagnosed with C3GN about two years ago. I would advise your daughter to be mindful of her salt intake, fluids and paying attention to what foods are high in phosphorus or phosphate (which could become something to keep an eye on later on down the line).

I had slight in my right side after my biopsy as well and used a heating pad to help with the dull pain. How is your daughter feeling overall? January was sometime ago, it may be wise to rule out kidney stones or a kidney infection as well to be on the safe side.

[Lalmam in reply to morikaren]

Aww thanks so much. We have checked for stones and infection and all is good Dr said probably just scar tissue etc. Do u mind me asking what foods uu avoid.

[morikaren in reply to Lalmam]

That's great news! Right now, I am avoiding animal protein (meat), dairy; both can cause high phosphorus levels; so I am trying my best to follow a plant based diet. But it gets a little tricky because whole grains, beans and lentils are also a bit high in phosphorus -- so my biggest word of advice would be to not overthink eating...everything in moderation.

Also staying away from processed meats like breakfast sausages, dark soda's and fast food. I was eating oatmeal every morning not knowing it was high in phosphate. And also pancakes and waffles.

[Lalmam in reply to morikaren]

That's fantastic advice, thanks so much. I cannot find anyone in ireland that has C3GN

[morikaren in reply to Lalmam]

It's such a rare disease! I stumbled across this site looking for a support group, because the journey is sometimes lonely when it's hard to connect with those who simply don't understand. Grateful we have this shared space! 💕