Monday, December 24, 2007

Could Narcolepsy be caused by gluten? :: Kitchen Table Hypothesis

Kitchen Table Hypothesis

from - Heidi's new site

It's commonly known that a severe allergy to peanuts can cause death within minutes.
What if there were an allergy that were delayed for hours and caused people to fall asleep instead? That is what I believe is happening in people with Narcolepsy.

Celiac disease is an allergy to gliadin, a specific gluten protein found in grains such as wheat, barley and rye. In celiac disease the IgA antigliadin antibody is produced after ingestion of gluten. It attacks the gluten, but also mistakenly binds to and creates an immune reaction in the cells of the small intestine causing severe damage. There is another form of gluten intolerance, Dermatitis Herpetiformis, in which the IgA antigliadin bind to proteins in the skin, causing blisters, itching and pain. This can occur without any signs of intestinal damage. Non-celiac gluten sensitivity is a similar autoimmune reaction to gliadin, however it usually involves the IgG form of the antibody and damage to the small intestine is not common. IgG antibodies are commonly associated with delayed food allergies.

It has recently been shown that certain IgG antigliadins bind to the protein Synapsin in the brain. I believe this starts a process which causes the cumulative loss of neurons producing the neurotransmitter orexin (also known as hypocretin) which causes narcolepsy.

This is some of the data which started my research:
- Narcolepsy-like symptoms in mice have been induced by injecting them with antibodies from narcoleptic humans. No relationship between symptoms and anti-orexin antibodies has been found in narcoleptic patients however, which suggests the possibility that other antibodies are directed against the orexin cells.
-Narcolepsy is strongly associated with an immune antigen gene DQB1*0602, appearing in 90% of patients.
-HLA DQB1*06 alleles are also associated with Non-celiac gluten sensitivity. In fact DQB1*06 alleles seem to confer a higher risk to present neurological rather than intestinal symptoms.

This is the process I have proposed:
1. Genetically susceptible people produce antigliadin antibodies capable of binding to brain proteins. These antibodies are ordinarily too large to pass through the blood-brain-barrier, and no damage occurs.
2. The BBB is compromised somehow. Many narcolepsy patients contract mononucleosis sometime in their teens and this damages the barrier and then their symptoms start. Other infectious agents and chemicals such as anesthesia can also damage the membrane. There are also reports of sudden onset or rapid progression after head trauma.
3. Antibodies infiltrate the brain, attach to the synapsin protein in the neurons, and obstruct neurotransmitter release. In narcolepsy the neurotransmitter is orexin, and it creates wakefulness and stimulates the dopamine cells elsewhere. Without orexin you fall asleep, and the lowered stimulation of the dopamine makes you depressed. This is why the attacks usually come in the afternoon. Gluten for breakfast starts the process, gluten for lunch clogs everything up, and a few hours later you can't stay awake. The problem is, the antibody lives for about 2 weeks. Every time you eat gluten you accumulate more of them in your brain.

4. This is not just a sleep disorder, it's progressive brain damage. The inability to release the neurotransmitter causes an excess of the protein alpha-synuclein in the cell. Alpha-synuclein is stiff and pointy and pokes holes in the cellular membranes like the nucleus, mitochondria and golgi complex, killing the cells. Autopsy examination of narcoleptics show they usually have NO orexin cells left.

Let me add two important points:

-The DBQ1*0602 allele is only the most commonly occurring gene in narcolepsy. It has been shown that other alleles also occur among narcoleptics, so do not assume because you have tested negative for this gene you are not gluten sensitive. There are many variants of antigliadin and no studies exist that determine which variants cause which symptoms. This mechanism also accounts for the less drastic symptoms of Idiopathic Hypersomnia.


The simple regimen of a gluten-free diet has been used effectively in the treatment of celiac disease. Strict adherence to a gluten-free diet arrests the progression of celiac disease, and long term compliance can result in healing of the small intestine and return to normal function. Early screening can prevent manifestation of the disease altogether. Similar results may be possible with the neurological effects of gluten sensitivity.

(In addition to myself, I do already have reports from 5 narcoleptics of positive tests, or rapid remission of their symptoms on a gluten-free diet.)

Personally I believe that anyone showing symptoms of narcolepsy, cataplexy, hypersomnia or major depression should be tested for gluten sensitivity. However, remember you can be gluten sensitive without having celiac disease. Celiac tests are specific for intestinal tissue antibodies and usually do NOT include an assay for IgG antigliadin. There are specific tests for gluten sensitivity which do include IgA and IgG antibodies. Your doctor may agree to order one for you, but as far as I can tell, most of them are only familiar with celiac disease and aren't aware of, or open to the possibility of neurological effects of gluten.

The above is from Heidi Lindborg's blog- the Kitchen Table. I've been thinking many of the same things based on learning about gluten, autoimmune diseases. I've been trying to connect the dots between obesity, ADD, diabetes, depression, circadian rhythyms, etc. and she's been doing the same thing. She has more links and articles, and lots of research on her blog, check it out!


Anonymous said...

You can count me as another report of a narcoleptic whose symptoms remitted rapidly upon adoption of a gluten-free diet. Your blog was part of what prompted me to give it a try. After years of taking it faithfully, I quit the Provigil after less than a week gluten-free. And, for what it's worth, I think your hypothesis is right.

K in Nebraska.

Scott said...

K, thanks for the comment, and congrats! I do have to credit Heidi Lindborg, who I quoted in the entire text of this post.

Anonymous said...

I too am another narcoleptic whose symptoms disappeared after one day on a gluten free diet. I just found Heidi's website and her family history is a lot like mine. Thanks for your article.
Lauren in Louisiana

zia said...

Count me in, too. I had debilitating Narcolepsy with Cataplexy. In 2002 I discovered certain foods were triggering it, mostly grains and fruits. This last year I discovered most of my problem was gluten and certain fruits related to pollen allergies I have. If I avoid these two groups, I am mostly symptom free (and med free)! I have more info on my blog

Adrienne said...

I recently developed narcolepsy right along with celiac. Like everyone else, the symptoms of BOTH disappeared on the GF diet. I read Heidi's family medical history & it's very similar to mine. Also, I had a nasty case of mono in high school that completely changed my immune system. I later developed fibromyalgia, which is a neurological condition, so I think she's on to something with the blood-brain barrier damage from the mono virus. Sadly, the link to her page isn't working anymore.

Tristan said...

I think there is some truth to this but there's more to the story. I am a narcoleptic with celiac and follow a strict GF diet and take provigil to stay alert and lunesta to sleep. I also have sleep apnea and use a CPAP. I do still get "N" attacks, where my face gets somewhat flushed, I get tired, and I feel like I'm slipping into dreamland. However the provigil reduces both the occurence and severity of those attacks significantly. When I do get glutened, I slip into dreamland also but its much more nightmarish. The description of neurotransmitters not functioning seems accurate - one one occurrence I couldn't remember the words to my two-year old daughter's favorite song. Anyway, I hope this information helps - I do hope for a autoimmune disease research breakthrough, although my various treatments work more or less okay. Thanks for continuing to investigate the issue.

AliB said...

I think that although gluten is often the biggest culprit, other foods can also be problematic. Dairy, soya, and corn are also strong contenders. Dairy is in a lot of food products and soy and corn are also in highly processed foods and are utilised to make highly processed elements like dextrose and corn syrup.

Too much carbohydrate and sugar can also be difficult for many people to cope with and as the 'Western' diet is so reliant on them it is no wonder that health issues are so prevalent these days. Wherever the Western diet goes you can guarantee ill-health will be hard on its heels.

If we are getting 'auto-immune' type responses then our bodies are still reacting to something. I have had to drop gluten, dairy, corn, soy and anything processed or 'mucked about with' in order to start regaining my health.

I now concentrate just on good wholesome natural foods and am a lot better for it.

Heidi Lindborg said...

Hi Scott-
Someone just sent me a link to this post. I had no idea it was here.
It's great to see so many positive reports.

Anyhow, I have a whole new website up with tons more information. I now believe the gluten antibodies react with viruses, so some people may have residual symptoms even after adopting a gluten-free diet.

I like the fact you still have my summary up though, the new research gets kind of elaborate, although I tried to simplify as much as possible.

Best wishes to you and greetings from my kitchen table!


Heidi Lindborg said...

Oh dear, I just noticed Tristan's comment-


It's probably the reason you're still sick....

smoo said...

This article was just posted in Scientific American about how celiac is metabolically tied to the consumption of gluten. Celiac and Narcolepsy have similar gene markers:

Anonymous said...

I dont know why in my search I didnt come across this article before. Ive been suffering incredibly from my Narcolepsy with Cataplexy...started when I was 16 years old and now I am 33. I searched food allergies and Narcolepsy by chance...was actually looking for food allergies and my chronic Iron deficiency anemia problem, as well. Doctors couldnt find anything wrong with me...and couldnt explain my iron deficiency...and now it all makes sense. Could both Iron deficiency and Narcolepsy be a problem, because of gluten? I am a vegeterian for 2 years...of course my symptoms have been around for over 10 years but, so much food with total wake up call for me. Will get tested for allergies, esp. gluten. Thanks for the posts and the articles. After so long...I may have come across a way to live a normal life and its so awesome. SO sad that I wasnt "normal" while my children were growing up. *sigh*

Tristan said...

Please be careful about posting misinformation. See the following from the mfr: Thank you for your interest in Cephalon, Inc. and our product PROVIGIL® (modafinil) Tablets [C-IV]. PROVIGIL does not contain gluten. One of the inactive ingredients in PROVIGIL is pregelatinized starch that is manufactured from corn (maize) starch. The pregelatinized starch in PROVIGIL is not derived from wheat.

Anonymous said...

Before I was Dx with narcolepsy I was on a GF diet for 6 months because I noticed that after breakfast sometimes, usually when it was a high gluten meal, I would get chills and then my stomach would start gurgling. Within an hour I'd be asleep with no ability to wake up, even when poked, prodded or shaken.

The problem is, I didn't notice a significant change in symptoms on the GF diet. I would still sleep for hours, have terrible borborygmi and feel exhaustion/muscle pain etc.

Now I'm stuck because the opiods I take for pain are nullified by the Nuvigil I was prescribed for narcolepsy.
I was also given Xyrem but the Jazz pharmacist told me that I could die taking the pain meds and the Xyrem together.
Pain trumps sleepy so I just spend my day taking naps, driving in the narcolepsy lane and pounding Rock Stars (to prevent driving in the narcolepsy lane)

Anonymous said...

have diagnosed narcolepsy. diagnosis was made few years ago by a somnologist in Croatia. First symptoms that I can remember of started 20 years ago. After lots of medication and failed attempts to seize symptoms and consequences I started gluten free diet. I must say that for the first time after more than 15 years I started to see a light at the end of a long dark tunnel. I also made some research about gluten intolerance and found out that most doctors don't like to go into this subject, even if it is so obvios that a higschool kid with a knowledge of "googling" could of easily made 99% correct diagnosis. First of all gluten intolerance is somehow "tabuised" by most medical professionals, narcolepsy even more because it is very rare. I was a very good example how rare it is. MY country has 4.5 Million inhabitants and I was second case that my neuropsychiatrist could remember of. Combine this two rare health disturbances and you get even less chance to find common symptoms. I also think that there is some global food conspiracy taking place recently regarding gluten and wheat in relation to food pyramid which base is wheat of all sorts. More and more people which do not have celiacs or gluten intolerance find a relief when going gluten free. I also read somwhere that grains and wheat were the food for slaves in Egypt and other early civilisations. In my opinion your thesis is near 99% correct and I would advise to all people which would like to benefit their health to go gluten free, because gluten is silent killer and poison little known of.

Anonymous said...

I had " idiopathic hypersomnia" diagnosed by overnight sleep study and MSLT when I was in my 20's. Medications helped me marginally function for a few years, had son, had to quit work , 3 years later had twins, they were diagnosed with autism spectrum at 3 yo, started them gluten casein soy free with great improvements, now after 2 and 1/2 years they are most definitely not PDD-NOS. I got gene tested suspecting genes for celiac due to alleviation of my symptoms on GF diet also. I am + DQ 2 and DQ8 . It is like I woke from a bad dream where I could barely function. Amazing that it is still not really recognized by medical community as a possible cause.

Anonymous said...

everything I've read here just reaffirms what we all know! So nice to read others' positive stories! I had idiopathic hypersomnia from age 17 to 34 (finally realized i wasn't just lazy; diagnosed at age 31 with sleep study and MSLT). I also had fibromyalgia since I was about 30. my husband and I wanted to have kids, but knew it would be close to impossible with my having to take medications all the time and still barely being able to function. researched and read as many articles, blogs, etc on IH and fibro, which led me to similar links about diabetes, autism, ADD, and everything pointed to changing my diet. completely dropped refined sugar, gluten and dairy. wow! within a month, my husband and Iwere shocked when i began to easily wake up around 6am without an alarm and could stay awake all day! fibro disappeared too, along with so many other weird things... no more body odor or sweating, no facial break outs, less swellingto name a few. and yes, prior to all this, my celiac/ gluten tests had also come back negative! it's like a second chance at life! We have a one year old daughter, and I can get up with her any time of the day or night! any of you who are reading this and wondering if it will work for you and ifyou should make the change, YES! you will never regret the things you cannot eat, because you will regain your life!