This question is about my son but I thought perhaps I would get more response in the general celiac community vs the parenting forum as this deals with the brain, abnormal MRI possibly due to celiac (his GI doc thinking out loud to me).
I was an active member of this forum during my sons' first years after diagnosis but dropped off for a bit as life got busy and both my children seemed to deal well post-diagnosis.
Fast forward 4.5 years... My oldest son, now 9, continually has excellent lab work and shows no GI signs of ingesting gluten. So it seems all good. A little over a year ago, he started having these weird, short, strong headaches. I get migraines (it's familial) and because they were so random and brief (less than 15 minutes) and I was dealing with a period of bad migraines, I let it go.
Well, they got worse in August/September. Eventually I got him into the doctor (pediatrician) who continues to monitor him. Late fall he was anemic which he is back to normal now after supplementation. No scans done. Headaches stayed steady at 1-2x/week. They really seem like they're turning into migraines to me. When I brought up the headaches to his GI doctor, she was worried and suggested an MRI and EEG. No EEG done but we did do the MRI through the pediatrician's orders. It came back abnormal (unspecified white spots in the cerebellum possibly due to migraine). We've been waiting for the neurologist consult and so I'm researching. Oh, his last labs did show a vitamin d deficiency so he's on a mega-supplement (50K IU/week). He's had huge growth over the past year (8 inches! and like 2 pounds)
1. I've seen much related to gluten ataxia but it seems like it is an issue pre-diagnosis or ill-management of the gluten-free diet. Could he be super sensitive to gluten neurologically but seem ok GI-wise and with labs?
2. Could gluten have caused irreversible brain damage pre-diagnosis and it's just now causing more problems? He was very obviously celiac once tested. He had very little physical signs but was tested on a fluke - or so I thought - and his labs were very high and his GI doctor saw obvious villi destruction during his endoscopy without even waiting for the biopsy. He was 4.5 at this time and just thinking about the nutrient deficiencies and issues during those critical growing years pains me. And it's so CRAZY to think how well he actually seemed. Well, except for the weird 8 months of odd things pre-diagnosis, but nothing that would have screamed celiac to me today knowing what celiac disease is.
Obviously, this may have nothing to do with gluten/celiac disease. I am merely looking for information. He is under medical supervision so I'm not looking to self-diagnose but I want to go in with some knowledge and good questions.
Thanks so much.