Neurological Issues In Breastfed Babies Of Celiac Moms?

[mommajama]

Has anyone ever heard of myelin problems linked to being exclusively breastfed by a celiac mom? I've found all kinds of papers about babies having myelin problems when exclusively breastfed by vegan moms with B12 deficiency (due to not supplementing themselves). However, I haven't heard anything about this in babies exclusively breastfed by celiac moms.

I ask because my daughter is not efficiently making myelin. Since breastfeeding is the best thing for this, I breastfed for 19 months, 17 of which were not supplemented with any vitamins. She did get fruit or vegetable once a day and a tiny bit of rice cereal.

I have to point out I had no idea I had celiac until close to her 2nd birthday. Her doctors have tested her for everything under the sun, even extremely rare leukodystrophies (i mean rarer than rare ones), and she has excellent doctors (neuro, metabolic geneticist, developmental specialist, endocrinologist, gastroenterologist who turned her nose up at my stool test results saying i may have a gluten problem - wasn't quite as fond of her gastro).

My celiac blood and gene tests also came up with nothing, so it took a great gastro of my own to want to do the biopsy & he found my celiac. (my symptoms are diarrhea so i've always been told to try to live with my "ibs"). I'm sure my daughter has it too. She had eczema for the 3 months she ate wheat, and when she got birthday cake frosting (with wheat starch) on her face she had a rash for 3 weeks.

Anyway, back from my tangent, I am wondering if my celiac caused my own malabsorption (i have a very mild B12 deficiency) and she didn't get what she needed. During my pregnancy I had no symptoms. Felt great. I also did not get a period my first 9 months of breastfeeding, and again felt great until right before I started getting a period again. So I think my celiac has a hormonal trigger too. My kid started out pretty normal, and her doctors did not notice any problems at her 6 month checkup. We did not go back until 11 months (2 months after I got a period & started with the diarrhea again) and by this time her head was dropping alot and her doctor was concerned by her tone. She slowed way down and stopped developing, and then started to lose weight and stopped rolling over. She still has delayed myelination and low tone, but Pediasure rescued her (even with the casein which i think bothers her a little) and she started to roll again and thrive and her startle reflex went away.

Her doctors act like I'm crazy when I ask if the myelin problem could be linked to my breastfeeding her when I wasn't absorbing my own nutrients. I'm wondering if anyone out there ever heard of neurological problems that resulted from this kind of situation. THanks.