I am currently in remission from a lifetime of narcolepsy after adopting a gluten-free diet. I have written a paper I believe explains the pathology.

Narcolepsy, Parkinson's Disease, and Lewy Body Dementia: An Autoimmune Hypothesis

Here's a summary:
The DQB1*0602 gene which is strongly linked to narcolepsy and PD is also linked to gluten sensitivity, an autoimmune reaction to wheat and other grains. Gluten intolerance usually causes intestinal damage and gastrological symptoms, but this version is often intestinally asymptomatic. A new study shows that the gluten antibodies (antigliadin) can bind directly to tissues in the brain. There they attach to a protein inside the neurons called Synapsin I. The function of Synapsin I is to hold the neurotransmitter inside the cell until it is stimulated. I believe that when the antigliadin is attached to the Synapsin, it cannot release the neurotransmitter. Not only does this cause a loss of neurological function, it is responsible for a buildup of another protein, alpha-synuclein, forming Lewy bodies and causing cell death.

Basically, I believe gluten antibodies are clogging up your brain. And you do not need to have any other celiac symptoms for this to happen.

There are more complicated interactions between antigen genes, so having the DQB1 gene is not required, and many variations of the symptoms are possible.

Dabbo, that includes narcolepsy without cataplexy, and IH. Maybe this is the "big picture" you are looking for.

Could this affect everyone, or are only certain people likely to be affected ?

Well technically, only people with the subset of genes that would create this form of antigliadin would be affected. However, since it could be completely independent of any other symptoms, it could be anyone in the population.

Not everyone, but anyone. Make sense?

If any of your relatives have narcolepsy, PD or celiac problems you are probably at risk.

I hope that helps.
Heidi

Do people rid the problem simply by avoiding Gluten ?

Yes, but depending on the amount of damage, there can be residual loss of function. This is explained in the last paragraph of my paper.

My recovery was dramatic. I wrote up my personal experience here:
http://www.lindborglabs.com/AboutHeid.htm

...but so many foods have Gluten in them - cakes, bread, cookies, pasta, breakfast cereals.......

Sorry, moderators.

There is an attempt in the paper at an explanation. However, the paper does not answer any of the questions raised.

Even if all of the biochemistry described were absolutely true, it would not explain the primary biochemical faults in the medical disorders referred to, such as the grossly insufficient biosynthesis of acetycholine in dementia, the reduction of tyrosine3-monoxygenase levels down to as little as 5% in Parkinson's Disease, and the excess rather than deficiency of serotonin in Narcolepsy. It would also not explain why only and specifically the suggested medical disorders were caused or why despite there being dozens of cell types in the nervous system with the same elements as those described, that dozens of medical disorders were not simultaneously caused by a negative response to gluten.

There presently remains major gaps in the biochemical theory, and a number of obvious inconsistencies.

I see this is a really old thread, but I'd just like to add my own experience.

One month ago I went on a low carb, high fat diet primarily for weight loss, but my narcolepsy sleep attacks are almost gone: normal was 2-3 times a day, now it's down to maybe 2-3 a week.

I don't know how my genes are, but something in this diet (or lack of it) is helping. My diet is very much like Atkins induction, but I stay away from all sweeteners (natural and artificial) as much as I can. Lots of fats and a fair amount of green vegetables. No flour of any kind.

I'm particulary sensitive to flour, which seem to cause sleep attacks. And falling asleep in resturants is kinda awkward. My previous diet would be considered a normal, healthy one, btw.

I still suffer from the same cataplexy attacks, although they seem to be a tad bit weaker, frequency and triggers are the same.

My 2 cents! Best regards