From: Gluten sensitivity as a neurological illness by M Hadjivassiliou, R A Grünewald and G A B Davies-Jones at: http://jnnp.bmjjourn...t/full/72/5/560
The introduction of more celiac disease specific serological markers such as anti-endomysium and more recently transglutaminase antibodies may have helped in diagnosing celiac disease but their sensitivity as markers of other manifestations of gluten sensitivity (where the bowel is not affected) is low. This certainly reflects our experience with patients with gluten sensitivity who present with neurological dysfunction. Endomysium and transglutaminase antibodies are only positive in the majority but not in all patients who have an enteropathy.
It appears that requiring a positive biopsy when IgG has indicated that a person is sensitive or intolerant before beginning a gluten free diet may lead to future neurological diseases.
Patients with neurological disease of unknown aetiology were found to have a much higher prevalence of circulating antigliadin antibodies (57%) in their blood than either healthy control subjects (12%) or those with neurological disorders of known aetiology (5%).
Since the neurological damage seems to be progressive and mainly non-reversable, I am now even more set on keeping myself and my children gluten-free with or without medical support (I'm now convinced this type of gluten sensitivity runs in my family.)
Only one third of the patients with neurological disorders associated with gluten sensitivity have villous atrophy on duodenal biopsy.
Something for those of you to think about who test only partially positive in your lab results. Maybe look at your elderly family members and at how they're aging. Are they stiffening? Having problems talking? Swallowing? Reacting? Staying awake? These all sound like rather typical "old age" symptoms, but why do some people have these symptoms and other do not? Is atrophying of the brain and muscles something we can prevent? Also consider that this does sometimes hit younger people (but I guess by it's progressive nature, it's more likely to become apparent in older people?)
I guess I've convinced myself to get the genetic test done. If nothing else, to give myself more leverage in convincing my 15 year old not to cave in to peer pressure or give up when he gets depressed.
Have others of you looked into this aspect of gluten intolerance? I've read mostly about the gastro effects, but not much here on the forum about the nerve damage that is not uncommon (often first marked by tingling and/or numbness in the extremeties.)