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The Gluten File-  Cara has been collecting data on the neurological effects of gluten for a long time.   Please go over and look at her extensive documentation of many disorders/symptoms that you or your family may exhibit.   For example:  Thyroid disorders, vitamin B12 and vitamin D deficiencies commonly occur with gluten intolerance.

Her site is where I started my research.


Gluten Free PWN-  is a narcolepsy group on Facebook.  There now have over 300 members, and they have lots of experience and ideas to help you out.  You have to make a request to join, but it's just to keep out trolls, so don't be shy.  Tell them I sent you.   I wish I could participate, but it gives me incredible anxiety.   I worry about every single thing everyone is eating all the time...


Here are the symptoms I look for





I don't feel a real need for a lot of testing.   Giving up gluten is the definitive test. 

Faster, cheaper.  Results = relief.


Celiac tests are specific for intestinal tissue antibodies and usually DO NOT include an assay for IgG antigliadin.   It is possible to produce IgG without IgA.   As a matter of fact, I think it's probably more common among zombies.


You can be tested for gluten antibodies or genes. 


IgG Gliadin (or Antigliadin) Antibody Profile

This tests if you are actively making gluten antibodies and at what level    You must be eating gluten for this test to work.  Order online from various  labs.  You go to a local lab to get the blood draw.


I recommend the DNA test from Enterolab though.
Gluten Sensitivity Gene Test (Molecular HLA-DQB1 analysis)

It's a DNA test for genes associated with celiac and gluten sensitivity.   Does not measure whether you are actively producing antibodies, only if you have the documented genes.   Can be done while gluten-free.  (This lab also does very sensitive antibody tests, however only for IgA and the celiac antibodies.) 

The direct link never seems to work though.   Go to Enterolab's home page, click Test Pricing and Information, and scroll all the way down, it's the last one.  It's a mouth swab you send in the mail.



You can also do the gluten elimination/challenge test on your own.

Eliminate gluten from your diet for a period of 3 weeks.   See if your symptoms subside.  Then eat something with gluten in it and see if your symptoms return.   (make sure you have time for a nap first...)




If you have narcolepsy- you will want to do two things. First- stop killing your orexin cells. Second- learn how to live with and manage the ones you have left.

My recomended diet therapy for narcolepsy is gluten-free-low-carb. If you're not restricting gluten the cell degeneration will continue. If you're not restricting blood sugars the symptoms will remain.

  • It is imperative that you eliminate gluten completely. Even a small amount of the protein can trigger a full immune response.

  • The longer you have been exhibiting symptoms, the more likely you are to have significantly impaired carbohydrate metabolism. 20 years? Yeah, sorry about that.


Update. Nagging Thought:

One of the saving graces of Narcolepsy is that the orexin cells are glucose sensitive. Some of them are highly sensitive and therefore shut down before the antibodies can infiltrate them and kill them. This leaves at least a few of them surviving.
Restricting your carbs without eliminating gluten may lower your blood sugars enough that those extra-sensitive cells don't shut down as often and are then susceptible to antibody damage. In general a low-carb diet restricts gluten, but not completely. Many low carb items contain small amounts of gluten- like salad dressings or soy sauce. This is enough to trigger your immune system to produce substantial quantities of antibodies.
So, although your symptoms will improve- if you are gluten intolerant, restricting your carbs without eliminating gluten may be even more catastrophic over the long term.


Gluten antibody production is effectively avoided by eliminating gluten from the diet. 

Yes, this is the only effective method currently available.






People on medications (especially Xyrem) should consult with  their doctors before attempting any diets or other treatments.









I won't go into the details of any of the diets.  There are lots of  websites that cover those subjects. You have Google too.  




Anyone suffering from Narcolepsy needs to eliminate gluten .   If you have tested positive for IgG antigliadin antibodies or  DQB1 *06, *03 or *02 that goes for you too.  It is my belief that if you have two of those alleles in any combination, it is imperative.   (At least until there is better data on the effects of specific combinations.)


Here's a quick guide to avoiding gluten in foods.   That's what I used  to start.  

Vegetarian Info is here

Gluten Free Diet 101

Safe Foods

Unsafe Ingredient List



Low Carb/Ketogenic

If you are a gluten-free narcoleptic and still having symptoms, you need to drastically reduce your blood sugar levels by restricting carbohydrates.   Please see my explanation of glucose sensors in the cataplexy section of the narcolepsy page.    A ketogenic diet prevents the liver from storing glycogen so you won't have the glucose fluctuations.  

(My orexin cells are so trashed, my carb limit is about 50 grams a day.   For comparison, one Cinnabon has 117.)


This goes for obese/diabetic people with BMI over 25 also.  

Clinically depressed patients will also benefit.


For blood sugar information I recommend "Dr. Bernstein's Diabetes Solution".

He explains it all.


I used the Atkins diet, but the kids these days seem to like the Paleo Plan.


Eating protein and fat does not make you gain weight or have heart attacks.  I highly recommend Gary Taubes article "What if it's all been a big fat lie?"  for those of you who can't break out of the "Low Fat is Healthy" mindset.

I also recommend his book "Why we get Fat".    If you read it with gluten and hyperinsulinemia in mind, it makes even more sense.  



Low Arginine

Gluten does seem to trigger the viruses, and eliminating gluten should curtail a lot of your activity.   But there are other things that will trigger them (sunlight, stress, menstruation).

Arginine is an amino acid which promotes the activation of herpes viruses. Lysine counteracts it.  If you are still having pain symptoms, modify your diet to be high in lysine and low in arginine.   No chocolate, no nuts or seeds.


Here's an arginine-lysine chart.






Exercise lowers blood glucose levels without insulin and raises orexin levels.

But it works best under a certain BMI.   If you are too heavy the beneficial effects are suppressed.  Muscle in obese individuals produces large amounts of a protein called myostatin, which inhibits muscle growth.   All you will do is exhaust yourself.  Strict low-carb dieting works better in this case.




Strep infection seems to be the trigger for the onset of Narcolepsy, and chronic and recurring strep infections seem to be common among narcoleptics.  Sinus and respiratory infections as well as sore throats and infected tonsils.
Bacterial activity in the mouth is accelerated by consumption of sugar and acid.
You need to change your oral care regimen.  Use baking soda instead of toothpaste.   Buy this book and learn about dental care.    All of you.  I mean it.


If you have apnea or snore, here's my info on  how to treat clogged sinuses.





How Narcolepsy Drugs Work-  all except Ritalin, Provigil and Nuvigil reduce insulin production.   That's why they are used for dieting too.


Not recommendedProvigil contains gluten.


I also believe stimulants accelerate the pathology.


Check your prescriptions at this site:  Gluten-Free Drugs


Since most of the drugs reduce insulin production, they are actually helpful to reduce cravings as you detox.

I do hope everyone tries to get off Xyrem though.  I have a real hatred for that stuff and the company that sells it.




Evidence is mounting that even without active lesions, herpes viruses are contributing to a great number of neurological disorders.   It is extremely safe and effective.   Generic and cheap too.


Patients in the U.S. will need to get a prescription.   Almost everyone else in the world can just consult a pharmacist.

  • Some doctors seem to be quite amenable to this idea.   Others aren't.

  • Active sores are the standard diagnostic criteria to get a scrip.   Active lesions are also an indication that your viral activity is uncontrolled.   Call your doctor.

  • I have reports that dentists will also prescribe this for oral lesions.





Coffee, coffee, coffee - It's magically delicious.  Increases neurotransmitter release and reduces insulin resistance.  Cream is fine, no sugar.


Vitamin D3 !!!!!!!-   low vitamin D levels contribute to immune disorders.   It is also correlated with narcolepsy and celiac disease.    The new recommendatons are 5000 IU per day for adults.
Omega 3/Fish Oil-  builds stronger cell membranes.  fights infections.

B12-  gluten intolerace leads to B12 deficiency.   Cara has lots of info.

Potassium!   for those on ketogenic diets this is crucial.  Low-carb eating drains the potassium right out of you.  Results in muscle fatigue and cramps.  At really low levels you get cardiac problems.  Orexin cells use potassium channels to regulate glucose, so low levels make you tired too.  When I am in ketosis I take at least 6 pills a day.



I'm also a big proponent of nicotine therapy.   I do not recommend smoking because of all the other particulates, but e-cigs using glycerine based juice has not been shown to be harmful.   Nicotine does not cause cancer.  As a matter of fact, nicotine kills oral and respiratory bacteria including strep variants that do cause cancer.  It also increases neural activity in the frontal lobes, and reduces inflammation and insulin resistance.  You can also use the gum if you prefer.  The skin patches do not seem to work nearly as well, intermittent dosing in the mouth is more effective.



Low carbers- I highly recommend investing in liquid Sweetener and Flavorings (another brand).  The maltodextrin in powdered sweeteners has 1 gram of carb per packet and adds up if you aren't careful.  I buy the syrups at a restaurant supply.





Personal Note 

I am not the person to be asking for food advice or recipe tips.   My situation is kind of unique so I don't make gluten free breads or other substitute items.  My husband is diabetic, I'm eating gluten-free low-carb low-arginine, we don't have kids- even the dog has food allergies, so we just basically gave up carbs altogether.  Besides, I hate to cook.  I have a hard time when people come over to visit,  always need to remind myself to get and make some starchy side dishes.


I do have some dieting advice, though.





 Big Fat Disclaimer:  The research on this website has not been peer reviewed in any way.   The conclusions presented are strictly the opinion of the author.  It is being self-published as a public service in consideration for sufferers and as a stimulus to the medical research community.  Information presented on this page may be freely distributed or copied. 

Appropriate credit is requested.

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