I did the genetic testing a year after my daughter and I had gone gluten free, just to satisfy my curiosity. I was sure with my strong family history of autoimmune disease and my daughter's remarkable response to a gf diet that we would have a main celiac gene. WRONG.

Both my daughter J and myself have double copies of HLA DQ1. This means that both my mother and father had at least one copy, and also that my husband carries at least one copy.

My youngest daughter J definitely had neurological symptoms related to gluten ingestion (periods of weakness/ limp body fatigue, staggering, leg drag, drooping eyelids and a lazy eye, slurred speech (just once), swallowing difficulties (2-3 times), incontinence (2-3 times). These symptoms were fleeting and brief and months apart in the beginning, but were becoming more regular as time went on. I was beginning to see some things like the leg drag and lazy eye on a weekly/daily basis. These all cleared within the first months, and I have not seen a return...except for an early (in the first months gf) gluten error resulted in a staggering episode.

I had neurological symptoms, too, but those seemed to be related to B12 deficiency, and cleared when correcting the deficiency a year before I went gluten free. My childhood was 'clumsy' and my older daughter's neurologist felt that my frequent fainting spells may actually have been seizures..but we will never know! My older daughter has history of seizures. We haven't done her genetic testing, but we know she has at least on copy of DQ1 because I have two). Hope you can follow all that!

Daughter J
Molecular analysis: HLA-DQB1 *0603, 0603
Serologic equivalent: HLA-DQ 1,1 (subtype 6,6)

Self:
Molecular analysis: HLA-DQB1 *0603, 06034
Serologic equivalent: HLA-DQ 1,1 (subtype 6,6)

Family history is very strong for Hashimoto's thryoiditis. My father has insulin dependent diabetes, and I presumably have pernicious anemia (although my antibody tests were negative as they are in 25%).

Dr. Hadjivassiliou and Dr. Fine's recognition of HLA DQ1 as being predisposed to gluten sensitivity, although rarely celiac disease, seems to explain my family.