I am going to have to request that this not become personally negative and rather remain a discussion on the subject. Valid questions ALWAYS have relevance. This is however not the place to pick holes in someone else's views or theories in a negative way. Constructive criticizm is valid, destructive is not in keeping with our guidelines

I would appreciate co-operation from all on this so that this relevant and interesting discussion can be left open.

thanks
Cheri

ps I have made edits above to steer the discussion back within the guidelines of NT.

If I have understood it correctly, in summary we so far have been given the following sequence of events :

Gluten > those that are genetically sensitive to gluten > antibodies > proteins in the body that are similar to gluten > ..................> Narcolepsy OR Parkinson's Disease OR Dementia

What we are presently lacking are : (1) the names of those proteins in the body that are similar in structure to gluten and that are therefore liable to be affected, (2) precisely how the effect on each specific protein can result in the relevant medical disorder, and (3) why it causes one medical disorder rather than another.

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.

No one seems to really know the answers to these questions.

This is true enough and one of the reasons it's really difficult to get doctors on board. Historically, it was believed to be only in the realm of the gastroenterologist. It left many people out of finding appropriate treatment/therapy.

Now, the medical community is very slowly becoming aware that *everything* in the body is affected and so all 'specialists' are going to need to be able to recognize it. This is the area of difficulty because present day testing is not really all that accurate. There are studies currently being done to try and establish other, more accurate testing.

However, even without the testing it is reassurring to see that many doctors in many fields are beginning to recognize gluten sensitivity for what it is, whether it's a DAN! doctor, a neurologist, a psychiatrist a heart specialist or a gastro. :)

And now that narcolepsy is being added to the list, even more people may have some hope to find relief.

My word, if the 'specialists' are having trouble explaining it, it's going to take the lay person awhile to figure out exactly how to do just that. Also, no single paper is going to answer every question. Heck, a whole book can't even answer every question.

Heidi, I must say, that is a *fabulous* paper! I enjoyed reading it a great deal! Lots of 'food for thought'. :winky:

Thank you for posting the link and allowing us all to open our minds just a little wider so that we can do a lot more pondering.

Thank you for posting this link! I feel kinda bad that it took me a month to finally read it! Been a crazy month though, looking for a job just before the holidays. Bleeeech. Anyways- I like the hypothesis Heidi; I plan on reading your paper this weekend. I've been seeing more stuff about gluten sensitivity lately I think.

Van- Thank you for asking the questions! You probably saved me some time!!

And Kim- you're right I think.
I had to go through 4 (or 6) doctors before I came to one who was willing to treat me long-term and diagnose my brachialplexopathy/Thoracic Outlet Syndrome. And he is a specialist who has (in my opinion) a huge knowledge base.

eat more veggies
 

for me bread, beer not hard to give up, but please leave me my veggies.

the more variety we can get in what we eat, the more colors, the healthier. that is what they are teaching in holland now. the old white flour, corn, sugar, and potato overkill is bad for everyone (my two bits).

heidi - great abstract.

Nacrolepsy on the rebound
 

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