Narcolepsy and Idiopathic Hypersomnia

[Heidi L]

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 (http://www.lindborglabs.com/Hypothesis.html)

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.

[Van Coover]

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

[Heidi L]

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

[Van Coover]

Do people rid the problem simply by avoiding Gluten ?

[Heidi L]

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

[Van Coover]

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

[Heidi L]

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.)

[Van Coover]

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

[Van Coover]

Why does Gluten cause different medical disorders in different people ?

[Heidi L]

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. (http://www.celiaccentral.org/Volunteer/Kids_Corner/Halloween_Treats/Gluten_Free_Candy/186/)

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.

[Heidi L]

Oh yeah, there is GF beer too. Redbridge I think.
Wine and distilled liquors are GF.

Interesting fact- if you have narcolepsy long enough you'll kill off all your orexin cells and lose your desire to drink alcohol anyway. Happened to me ten years ago.

[Van Coover]

Going to restaurants must be a nightmare !

[Van Coover]

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.

Is there a list of proteins in the body that have amino acid sequences that are similar to gluten ?

[Van Coover]

Interesting fact- if you have narcolepsy long enough you'll kill off all your orexin cells and lose your desire to drink alcohol anyway. Happened to me ten years ago.

I've never heard of "orexin cells". What are their function and what part of the body are they in ?

[Heidi L]

Most restaurants offer gluten free options, you just have to be careful.

Orexin is a neurotransmitter that promotes wakefulness. Lack of it causes the symptoms of narcolepsy.

Anyhow, I spent the last couple days writing a less technical version of my paper. Please read it.

http://www.lindborglabs.com/LessTechnical.htm

[Van Coover]

Is there a list of proteins in the body that have amino acid sequences that are similar to gluten ?

Why would somebody be affected with one medical disorder rather than another ?

[jccgf]

Going to restaurants must be a nightmare !

Well, it can be. But, many chain restaurants actually offer GF menus now. Here are some.
http://www.glutenfreeandbeyond.org/forum/viewforum.php?f=18&sid=3dcf193a8bf843177f7cfeed47778f3a

And for a little reassurance, there are actually THREE different gluten free beers available. Six years ago there were none. And if you home brew, you can get gluten free ingredients, too.

REDBRIDGE by Anhueser-Bush
http://www.anheuser-busch.com/press_room/2006/redbridge_122006.html

New Grist by Lakefront Brewery
http://www.lakefrontbrewery.com/sorghum.html

Bard's Tale (even available at Outback Steakhouse)
http://www.bardsbeer.com/testimonials.asp


Gluten sensitivity is associated with a number of autoimmune, neurological, and other diseases. As this is becoming better recognized, the gluten free population is growing, and gluten free menu options and specialty products are becoming increasingly available.

The cost is starting to come down on some of the specialty products, but generally they are more expensive. BUT, you can manage a satisfying gluten free diet without any specialty products at all. I personally do buy gluten free pasta, pretzels, and sometimes bagels. I make my own bread. You can bake cakes and cookies with gluten free flours, or buy ready made mixes. Or just do without those things. Gluten does have addictive properties, and once it is removed from your diet, you sometimes just stop wanting it.

Anyway... just wanted to make the point that while a gluten free diet takes commitment (it has to be strict) and is a big adjustment in the beginning, before long it is second nature. I've been gluten free for six years now. It is 100% EASY at home, but a bit of a nuisance when traveling or eating away from home... but with a bit of forethought, can be done.

Cara

[Van Coover]

There seems to be a major gap in the Gluten theory that is puzzling me.

There does not appear to be any reason why somebody would be affected with one medical disorder rather than another.

Even if there are proteins in the body that have similar structures to the two proteins in gluten, and that each of these proteins are related to a different medical disorder, it still doesn't explain why only one of these would be affected in one individual and another would be affected in another individual.

[Heidi L]

It's not the gluten. It's the antibodies created by an allergic reaction to gluten. Allergies are genetically based.
By your reasoning we should all be dead of peanut induced anaphylaxis. But then again, you think narcolepsy can be cured with massive amounts of sleep....

[Van Coover]

It's not the gluten. It's the antibodies created by an allergic reaction to gluten. Allergies are genetically based.

True, but that doesn't respond to the question I asked.

By your reasoning we should all be dead of peanut induced anaphylaxis.

I haven't put forward any reasoning. What I have asked could not remotely be associated with "peanut induced anaphylaxis."



I have previously studied and experimented with sleep very extensively. You started the Thread with a hypothesis. I am interested to see if there is anything in it. The only source I can go to of your theory is you. If the theory is true there should be a direct sequence of links between gluten and one medical disorder rather than another. However, the explanations put forward so far such as allergies and antibodies simply don't forge those links.

[Chemar]

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.

[Van Coover]

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.

[Heidi L]

Sorry, moderators.

I have written a paper I believe explains the pathology.

Narcolepsy, Parkinson's Disease, and Lewy Body Dementia: An Autoimmune Hypothesis (http://www.lindborglabs.com/Hypothesis.html)

[Van Coover]

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.

[KimS]

Why does Gluten cause different medical disorders in different people ?

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

There does not appear to be any reason why somebody would be affected with one medical disorder rather than another.
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.

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

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.

[dabbo]

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.

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.

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.

[tied]

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.

[jvb76]

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