Narcolepsy and Idiopathic Hypersomnia
 

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.......

Hmmmmm.

Cookies and Brain Damage vs No Cookies?

Tough call.

(But it's really not that bad. There are plenty of alternative recipes for breads and snacks, and more and more products are becoming available.)

...no more sandwiches, no more pancakes, no more dumplings, no more beer, no more rice.......

Why does Gluten cause different medical disorders in different people ?

Rice, corn, potatoes, and sugar are all legal. You just have to use different flour. It's available in health food stores. My safeway also sells GF cereals, crackers, pancake mix and pasta.

Here's a page with alternative recipes for all those things you mentioned. There are GF cookbooks too.
http://www.celiac.com/categories.php?catid=3400

Here's a page with a long list of GF candy.

It's a little bit inconvenient, but I found narcolepsy and dementia to be much more troublesome.

As to why gluten causes so many problems: because antibodies are not completely specific. They are supposed to bind to the gluten but they bind to other proteins that have amino acid sequences that are similar to gluten. In addition, there are numerous different antibodies that can be produced in response to gluten, so different tissues may be targeted.