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Do Any Of You Eat A Gluten-free Diet?


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#1 Kimberly

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Posted 20 August 2008 - 08:58 AM

This is likely going to be a long post, so hang in there.

I've worked for a health insurance company for the last 6+ years, so I am always looking for "medical evidence" and reading clinical studies to learn more about WHY I have Narcolepsy.

I understand that I have it because there is a lack of hypocretin/orexin in my brain and because I have a genetic predisposition by possessing the HLA-DQB1*0602 gene.

I understand I get my genes from my parents. But WHY am I lacking hypocretin/orexin?

Did something cross the blood-brain barrier to damage my brain? What was it? How did it do that? Was it a virus? Was it an "intruder" that caused an autoimmune reaction? Did it damage the hypocretin/orexin transmitters so less was produced, or did it damage the receptors so less was received? Is my brain still being damaged?

Obviously I will be donating my brain to Stanford so they can continue to look into these things.. but.. I am impatient and want to know NOW how this happened, so I can understand how to prevent future damage to my brain and the worsening or development of future neurological conditions.

This became even more important to me when I came across an article this weekend that indicated a link between Narcolepsy and Parkinson's Disease. Let's just say I am having a hard enough time with Narcolepsy -- I don't want to get Parkinson's. There is no proof in the article that says that people with Narcolepsy develop Parkinson's, so don't let my statement cause fear. But how can we NOT think that it's a possibility, especially since we don't know HOW our brains got damaged in the first place?? http://www.scienceda...70504122134.htm

So.. back to the topic of gluten-free.

Gluten is a protein found in wheat, barley, and rye. It is basically in every bread product, cracker, cookie, roll, pastry, etc.

People who are allergic to Gluten are diagnosed with a condition called Celiac Disease, which is very serious. When they ingest gluten, it actually causes damage to their intestines which reduces their ability to absorb nutrients from their food.

I dont have Celiac Disease, I don't have any gastrointestinal symptoms when I eat gluten.

However, there has been some research done that indicates there is also Gluten sensitivity (rather than allergy), where people don't have gastrointestinal symptoms. They have neurological ones instead, and may not even know about them. A researcher named Marios Hadjivassiliou started looking into this in the mid-1990s, and he believes that neurological conditions like gluten ataxia, neuropathy, seizures/epilepsy, cognitive decline, depression/anxiety/panic, migraines, schizophrenia, ADD, and autism might be tied to Gluten sensitivity. In other words, he thinks that instead of damage to the intestines, people with Gluten sensitivity are suffering damage to their BRAINS.

He also believes that certain autommine conditions like MS, Addison's, Rheumatoid Arthritis, Lupus, etc may also have a Gluten-sensitivity link.

So.. Narcolepsy is a neurological condition that is theorized to have an autoimmune cause, right? So -- is it the consumption of Gluten that caused my brain damage? Am I sensitive to Gluten without even knowing it?

(Years worth of reading on this research can be found at http://jccglutenfree.googlepages.com/ )

Interestingly, people with Celiac Disease often have the genes HLA DQ2 and HLA DQ8. Dr. Hadjivassiliou has found that people who have non-Celiac gluten sensitivity often have HLA DQ1 (same gene that is found in 90% of people that have Narcolepsy with Cataplexy), DQ2, or DQ8.

All of this is leading me to wonder if I eliminated gluten from my diet, would I see an improvement in my symptoms? Or -- could it stop the progression of any further neurological damage?

There was research done at Duke University years ago that says that a low-carbohydrate ketogenic diet helps with the symptoms of Narcolepsy. What's low carb? NO BREAD! So which is it -- low carbohydrates, or the elimination of gluten -- that caused the improvement??

Which leads me to my question. Do any of you eat a gluten-free diet? Has it improved your symptoms? Do you have any more research or articles on this subject for me? It is so restrictive and very difficult to maintain, so I don't want to have to expend tons of energy on special food preparation if I won't get anything out of it.

Thanks for sticking with me!

Kimberly

#2 Lais02

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Posted 20 August 2008 - 11:55 AM

I don't think I have any gluten alergies or anything like that, but...

About 8 years ago my dad was doing the Atkin's diet, and I decided to do it with him. The Atkins diet is no sugar and no carbs. Your body goes into ketosis(not sure how to spell that).

I only did this diet for a week, because my mom freaked out about it. I lost 20 pounds which was awesome lol, but I suppose that's way too quick to lose that.

Other than losing weight the one thing I noticed the most was I had SO MUCH ENERGY! I didn't have any idea at that time that I have N, but I had never felt so awake. It's pretty much the same way I felt the first 6 months on Provigil. I loved having energy and being awake, alert, and able to concentrate. I have not tried this diet again, but I might someday.

So I know this doens't really help with letting you know which part is causing the energy, but I though I would let you know that something like that worked for me.

It would be interesting if someone researched this.

#3 Henry G

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Posted 20 August 2008 - 02:02 PM

QUOTE (Kimberly @ Aug 20 2008, 01:58 PM) <{POST_SNAPBACK}>
Was it an "intruder" that caused an autoimmune reaction?


I believe I can recall the exact day - that "stressful episode" in my childhood when the autoimmune attack took place.

I believe most Narcolepsy is caused by that autoimmune attack. While other Narcolepsies is caused by brain injury.

And in theory there are people that haven't had their Narcolepsy manifested yet - and it lingers only potentially - as no attack internal or external took place.

I have many "beliefs", "theories" and "ideas" but which have been built on a personal level; I am very happy that from now on I can verify and learn from others what applicable to all N cases.

Ketosis

Sounds cool. I can eat pure meat anyday stuff the carbs. But living in England and alone - it's hard to follow a diet.

Ketogenic diets are recommended for Epileptic patients but am curious if there is any literature or research on Narcoleptic ones.

I never felt any difference really when I went on a semi-Hayes diet. But there is one thing that is true with me: Food causes sleep (specially starchy ones)

In the past I would starve purposefully - so as to reduce EDS.

Recently I've found that spicy food helps me (but only marginally)

OK back to Kimberly - don't take my answers literally but at this current spot in time - they are:

1. Did something cross the blood-brain barrier to damage my brain?

No.

2. What was it?

Nothing.

3. How did it do that?

It didn't

4. Was it a virus?

No

5. Was it an "intruder" that caused an autoimmune reaction?

I don't believe so.

6. Did it damage the hypocretin/orexin transmitters so less was produced, or did it damage the receptors so less was received?

Narcolepsy is brain damage. Hypothalamus to be precise. So studying more about the Hypothalamus what kind of attacks it can receive, what infections it is open to and so on might shed more light into your question.

Also I have a really unfounded theory.

There are (at least) 2 types of Narcolepsies:

*Those with Cataplexy (possibly about 90% of cases)
* Those without Cataplexy (the remainder)

And Maybe and just maybe - the first one alludes to destruction of the transmitters, while the second one alludes to alteration of the receptors.

This is worrying.

Because if in my wild unresearched speculation (thanks to Biochem and other Money-Hungry Libraries not allowing patients to read their reports) ..

Because if my speculation is close to the truth - than not all Narcolepsies will be cured by Orexin replacement alone.

If the receptors are still "bugged", then no amount of Orexin stuffed to the system will make a difference; the problem will lie elsewhere .. but if that makes the minority of Narcolepsies then a cure for those will probably never be funded.

I am making things - of course black and white.

It could be there is a whole a spectrum of Narcolepsies. Although my layman feeling is that it seems to be just two.

It appears those with N but no Cataplexy .. go on to develop Cataplexy later on.
I say that because my doctor said with confidence there is a 90% chance I will still develop Cataplexy in the next 5 years, more than 5 years have passed and I never have.

I probably will never develop C - because my body-mind has been hard-wired to use the fear-fright-flight response as much as possible - it has been my survival tool since I was 15. I've programmed it.

Strong emotions spurs me into survival-mode; in survival mode I become truly awake, primal. So in a shock, fear or fright my usual reaction is to become very lucid extremely vigilant (and possibly aggressive). Once I did the mad thing of separating two strangers from fighting - not because I wanted to show off or be a good citizen but because I saw that as an opportunity to wake-up again. Of course I refrain from doing stupid things like that again - not so kamikaze anymore.

Narcolepsy with C possibly behaves very much differently than Narcolepsy without C.

I wish there was more open information on any research. It makes a big difference. Another thing I do not have is "sugar-cravings" (carbohydrates) which is another symptom of a normal Narcoleptic patient.

Is my brain still being damaged?

I dont believe so.

Neuroplasticity

We should research / study that .. maybe there is something there that could shed a light in making the mind-body more efficient.

#4 Kimberly

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Posted 20 August 2008 - 02:15 PM

QUOTE (Henry G @ Aug 20 2008, 02:02 PM) <{POST_SNAPBACK}>
Ketogenic diets are recommended for Epileptic patients but am curious if there is any literature or research on Narcoleptic ones.


Henry,

See the journal of the American Academy of Neurology for a study done at Duke University. 9 patients with Narcolepsy followed the Atkins diet (a low-carbohydrate, Ketogenic diet) for 8 weeks, and their daytime sleepiness decreased by 18% during that time. http://www.neurology...ract/62/12/2300

That's the only study that I am aware of.

I have to re-read the rest of your reply before I can respond to the rest -- but thank you for your theories!

#5 Henry G

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Posted 20 August 2008 - 05:09 PM

QUOTE (Kimberly @ Aug 20 2008, 07:15 PM) <{POST_SNAPBACK}>
Henry,

See the journal of the American Academy of Neurology for a study done at Duke University. 9 patients with Narcolepsy followed the Atkins diet (a low-carbohydrate, Ketogenic diet) for 8 weeks, and their daytime sleepiness decreased by 18% during that time. http://www.neurology...ract/62/12/2300

That's the only study that I am aware of.

I have to re-read the rest of your reply before I can respond to the rest -- but thank you for your theories!


I am about to read the study

But from the outset I would be very suspicious about the validity of performing such an experiment.

How do you measure EDS?
It's too subjective.

How do you enforce a double/triple Blind Study?
That is, how to get rid of placebo?

If I were forced to eat a protein/fat rich diet: fillet steaks and melted Swiss cheese - I would too feel pretty awake!

If someone else was taking care of what I eat or do not eat - that would be roughly 20% of my energy saved to spend somewhere else.

A healthy diet does not cure N, but improves or mitigates it - but just as it would any other medical condition.

The 18% improvement sort of suggests to me Ketogenic diet is no miracle cure or treatment. Having said that I do have a slightly tendency to jump right into impulsive conclusions before doing my fair bit of research and so - will read the article (been bookmarked). I am sure there is lots of things there to learn / consider there.

#6 Guest_~K~_*

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Posted 28 August 2008 - 10:03 AM

I eat a diet that is 99% gluten-free. I have allergies, and I discovered that I am allergic to gluten -- whenever I ate my allergies would flare up. Eventually the lightbulb went on over my head, and I tried quitting gluten -- and got better.

Please note, in your article, you said that people who are allergic to gluten have celiac disease -- no. An allergy is an allergy. Celiac disease is different. You can be allergic to gluten and not have celiac disease. (I have been tested for celiac disease and don't have it. I do have a gluten-allergy.)

As for whether a gluten-allergy causes narcolepsy, I'm going to say no. However, allergies can impair the quality of your sleep and not getting enough sleep will certainly make your narcolepsy worse. Thus, if you are allergic to gluten, removing it from your diet should improve your narcolepsy symptoms -- it improved mine by about 50%. But the improvement is because I'm sleeping better and feeling better. When your over all health is better, narcolepsy is minimized. If your health worsens, for any reasons, whether it's a broken leg or diabetes or whatever, the added stress on your body makes it harder to keep the narcolepsy in check.

By all means, learn to take care of yourself and address ALL your physical and mental needs. The better your health, the easier it will be to control narcolepsy.

~K~



#7 Kimberly

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Posted 31 August 2008 - 10:41 PM

~K~ :

Thanks for correcting my error about celiac vs gluten allergy. There is so much misinformation out on the 'net and I definitely don't want to be the one propagating more (however unintentionally)!

QUOTE
Please note, in your article, you said that people who are allergic to gluten have celiac disease -- no. An allergy is an allergy. Celiac disease is different. You can be allergic to gluten and not have celiac disease. (I have been tested for celiac disease and don't have it. I do have a gluten-allergy.)


Kimberly

#8 Mike M

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Posted 04 September 2008 - 10:41 PM

Oddly enough, I started eating a gluten-free diet before I got my Narcolepsy diagnosis. As my doctor and I were trying to figure out what was wrong with me, we explored Celiac's Disease. Since I thought it was a "for sure" diagnosis, I started on the gluten-free diet. While I turned out not to have Celiac's, I remained on the diet because I felt better doing it.

Since I am not a Celiac and don't seem to have an allergy either, I am not rigid about the no gluten. Still, when I am completely gluten free for a few days, I definitely feel better. I too doubt that the gluten can cause Narcolepsy, but I have no doubt that removing it from my body helps be sleep and function better.

#9 iowa4est

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Posted 10 September 2008 - 03:52 AM

My daughter was recently diagnosed with Celiac disease. In my research I came across the same gene information and became very curious why we have two people in our small family with seemingly rare conditions that may be genetically linked. I became very excited thinking I may have stumbled across something that would help me with my narcolepsy, like I had found the "cure". Incidentally I tested negetive for Celiac disease. I am trying the diet anyway, but am not having much support from my family who thinks any positive effects may be a placebo effect. Is it possible to have a "placebo effect" with narcolepsy. Am I crazy or can diet help?

#10 Mike M

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Posted 13 September 2008 - 11:32 PM

I think dietary changes can always help. And, even if it is placebo effect, who cares? If you have more energy, you have more energy. Since narcolepsy is a brain condition, who is to say what can help or not help! I think it is great that you are trying the diet. Plus, it will give tremendous support to your daughter. Good luck and keep folks posted!

#11 too exhausted

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Posted 19 September 2008 - 05:54 AM

QUOTE (Kimberly @ Aug 20 2008, 01:58 PM) <{POST_SNAPBACK}>
This is likely going to be a long post, so hang in there.

I've worked for a health insurance company for the last 6+ years, so I am always looking for "medical evidence" and reading clinical studies to learn more about WHY I have Narcolepsy.

I understand that I have it because there is a lack of hypocretin/orexin in my brain and because I have a genetic predisposition by possessing the HLA-DQB1*0602 gene.

I understand I get my genes from my parents. But WHY am I lacking hypocretin/orexin?

Did something cross the blood-brain barrier to damage my brain? What was it? How did it do that? Was it a virus? Was it an "intruder" that caused an autoimmune reaction? Did it damage the hypocretin/orexin transmitters so less was produced, or did it damage the receptors so less was received? Is my brain still being damaged?

Obviously I will be donating my brain to Stanford so they can continue to look into these things.. but.. I am impatient and want to know NOW how this happened, so I can understand how to prevent future damage to my brain and the worsening or development of future neurological conditions.

This became even more important to me when I came across an article this weekend that indicated a link between Narcolepsy and Parkinson's Disease. Let's just say I am having a hard enough time with Narcolepsy -- I don't want to get Parkinson's. There is no proof in the article that says that people with Narcolepsy develop Parkinson's, so don't let my statement cause fear. But how can we NOT think that it's a possibility, especially since we don't know HOW our brains got damaged in the first place?? http://www.scienceda...70504122134.htm

So.. back to the topic of gluten-free.

Gluten is a protein found in wheat, barley, and rye. It is basically in every bread product, cracker, cookie, roll, pastry, etc.

People who are allergic to Gluten are diagnosed with a condition called Celiac Disease, which is very serious. When they ingest gluten, it actually causes damage to their intestines which reduces their ability to absorb nutrients from their food.

I dont have Celiac Disease, I don't have any gastrointestinal symptoms when I eat gluten.

However, there has been some research done that indicates there is also Gluten sensitivity (rather than allergy), where people don't have gastrointestinal symptoms. They have neurological ones instead, and may not even know about them. A researcher named Marios Hadjivassiliou started looking into this in the mid-1990s, and he believes that neurological conditions like gluten ataxia, neuropathy, seizures/epilepsy, cognitive decline, depression/anxiety/panic, migraines, schizophrenia, ADD, and autism might be tied to Gluten sensitivity. In other words, he thinks that instead of damage to the intestines, people with Gluten sensitivity are suffering damage to their BRAINS.

He also believes that certain autommine conditions like MS, Addison's, Rheumatoid Arthritis, Lupus, etc may also have a Gluten-sensitivity link.

So.. Narcolepsy is a neurological condition that is theorized to have an autoimmune cause, right? So -- is it the consumption of Gluten that caused my brain damage? Am I sensitive to Gluten without even knowing it?

(Years worth of reading on this research can be found at http://jccglutenfree.googlepages.com/ )

Interestingly, people with Celiac Disease often have the genes HLA DQ2 and HLA DQ8. Dr. Hadjivassiliou has found that people who have non-Celiac gluten sensitivity often have HLA DQ1 (same gene that is found in 90% of people that have Narcolepsy with Cataplexy), DQ2, or DQ8.

All of this is leading me to wonder if I eliminated gluten from my diet, would I see an improvement in my symptoms? Or -- could it stop the progression of any further neurological damage?

There was research done at Duke University years ago that says that a low-carbohydrate ketogenic diet helps with the symptoms of Narcolepsy. What's low carb? NO BREAD! So which is it -- low carbohydrates, or the elimination of gluten -- that caused the improvement??

Which leads me to my question. Do any of you eat a gluten-free diet? Has it improved your symptoms? Do you have any more research or articles on this subject for me? It is so restrictive and very difficult to maintain, so I don't want to have to expend tons of energy on special food preparation if I won't get anything out of it.

Thanks for sticking with me!

Kimberly




My N became apparent when I was ten years old. I was diagnosed with IBS (irritable bowel syndrome) at that time as the N & C diagnoise came 24 years later. I have had really bad diarrhoea since January and massive bloating making me look nine months pregnant. I have tried fibrogel, peppermint oil, relaxation, massage etc. Last week I was so fed up I had a food intolerance test. Many food intolerances are associated with an inappropriate immune response to a particular food or foods. I tested for a strong intolerance to gluten. This does not mean that I have coeliac disease as this is an auto-immune disease were the body produces antibodies that attack its own tissues (the gut). But If I cut out gluten then the bloating, diarrhoea should go down. Food intolerance can cause sinusitis, aching muscles , weakness, joint pains, migraine, depression, fatigue, impaired concentration, itchy skin and lots more. I have all these symptoms and had put them down to my N & C. I have read that on other N support groups that cutting out gluten has stopped their Cataplexy symptoms. Also the atkin diet with it being gluten free has improved symptoms for EDS and C. I am giving it a go now. The test that I had done was from the www.food-detective.com and cost 89 pounds from a health spa. I live in the UK.


#12 Mike M

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Posted 19 September 2008 - 04:47 PM

too exhausted,

That is an awesome insight! It makes me even more determined to hold to my gluten-free diet. I also find it interesting that when things got bad for me in 2001, my first "diagnosis" was IBS. I try to watch my food regularly, but even with a gluten-free diet, I tend to have 4-8 bowel movements a day. I look forward to the day when someone can get to the deepest roots of narcolepsy and explain all of this.

#13 too exhausted

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Posted 27 September 2008 - 09:46 AM

Hi Mike M,

I have been reading up on celiac disease after my test showed a high intolerance to gluten and rye. I went to my GP and he has given me another blood test as he thinks that it is highly likely that my IBS symptoms and the high anti bodies found in the test point to celiac disease. The website that I gave out for the intolerance test actually allows you to buy the test for 40 pounds. You do it yourself but its a saving of 50 pounds and its easy to pick your own finger and get the results in 40 minutes.
I have read that celiac disease causes the auto immune system to attack the stomach linning but also you can have celiac disease without any of the digestive symptoms. THIS IS BECAUSE THE AUTO IMMUNE SYSTEM CAN INSTEAD OF ATTACKING THE GUT, ATTACKS THE HYPOTHALAMUS. THEREFORE IT HAS BEEN FOUND THAT PEOPLE WHO HAVE EXPERIENCED NARCOLEPSY AFTER SUFFERING A HEAD TRAUMA AND STOP GLUTEN IN THEIR DIET HAVE HAD THEIR SYMPTOME EASED. THERE IS YOUR LINK BETWEEN NARCOLEPSY AND CELIAC APART FROM THEM BOTH BEING HLA AUTO IMMUNE DISEASES.
My N unfortuntley was not from a head trauma but from a combination of stress and hormones which caused my trigger effect. I will need a few more blood tests and a camera down my gut before I can have a definite on whether I have coliac. I could just be having IBS symptoms along with my Cataplexy. Peppermint oil capsules do help my IBS.

#14 Mike M

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Posted 27 September 2008 - 07:07 PM

too exhausted,

WOW! I hope you don't have Celiac's. It is a rotten condition. It will be interesting to see how those connections you found continue to play out. Since I did extensive Celiac's testing before my second PSG and MSLT showed my narcolepsy, I know that I don't have Celiac's. I not only got the camera down my throat, but I also got to swallow one that passed all the way through. It was fun. I also had no head trauma. Still, I think you have some awesome insights and do think that gluten issues and IBS and narcolepsy all have commonalities. Good luck with your tests and please keep all of us posted.

#15 Heidi L

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Posted 29 September 2008 - 12:17 PM

Hi Kimberly-

Please come over and check out my site. http://www.lindborglabs.com/table.html

I've been researching the connection between gluten and Narcolepsy for a year now...

Heidi

#16 too exhausted

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Posted 30 September 2008 - 04:29 AM

QUOTE (Heidi L @ Sep 29 2008, 05:17 PM) <{POST_SNAPBACK}>
Hi Kimberly-

Please come over and check out my site. http://www.lindborglabs.com/table.html

I've been researching the connection between gluten and Narcolepsy for a year now...

Heidi


Hi Heidi,

Thank you for putting your site on. When I was researching narcolepsy and gluten on google it took me to your page. I tried getting back to it but my foggy brain just wouldn't work. Really intersting reading. I have been nearly two weeks gluten free and my bloating is going down. I can see the start of my once hour glass waist coming back (even if the size is a bigger). I don't know if I have more energy as my dexedrine has had to be upted as every couple of months I get used to the tablets. I take more once and then when I need another stronger dose I go cold turkey. It always is at xmas time that I am on no meds. The worst time as my family are off work and school and I can't sleep in bed all day.


#17 Heidi L

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Posted 30 September 2008 - 12:10 PM

Thanks TE.

Sorry about my site, I am in the middle of rewriting my paper and had it down for a while. I have so much information now it's going to be 4 papers though so it's taking a while.
Anyhow, over this year I have learned a few things that I will add here since people seem to be interested (I have gotten no reply from any of the "professional" researchers I have contacted).

1. If you are a long time narcoleptic or have stress induced cataplexy, you are probably also extra glucose sensitive. If you are still having problems after going gluten-free, cut out the carbs too. Being in ketosis works the best because you have no glucose stores in your liver.

2. Narcoleptics are NOT prone to get Parkinson's. The lowered stimulation of the dopamine cells makes them less susceptible to damage by the antibodies.

3. If you have migraines, spinal pain, or grind your teeth, it's probably latent herpes infection. Take lysine supplements and lower your arginine consumption.

4. Fish oil strengthens the cell membranes and blood-brain-barrier. Vitamin D lowers antibody production. These help a lot.

5. The mood improvement is the most incredible part. Everyone who has contacted me agrees. Way more life changing than the ability to stay awake.


I'll wager you're a new person by this Christmas...
Best wishes for a remarkable recovery.

Heidi.

(note to everyone- please feel free to contact me directly from my website. I don't usually hang out here- a friend sent me a link to this thread. thanks!)

#18 dogdreams

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Posted 30 September 2008 - 10:07 PM

First of all, I recommend donating your brain to Dr. Siegel at UCLA who was the first to collaborate on a brain bank for N and does amazing work. There is more cooperative collaboration among labs around the world for the brains in that bank so odds are it will go to better use. IMHO, Stanford is too narrow-minded and they don't like to share, so the availability of your tissue would be very limited.

But I digress... To answer your questions, sorta...

YES I avoid gluten. I am allergic to many foods, wheat being one of them, and they all trigger my Narcolepsy. When I avoid these foods I feel great.

That being said, I do not have the HLA type you do, but I can tell you that the reason you lack hypocretin is because your immune system killed off 90% of the neurons in your hypothalmus that make hypocretin. The 10% that are left have probably grown larger to compensate but it's really not nearly enough. I know...I counted them (in other people's brains, silly!)

It was not an intruder that hurt you. It was your own immune system that was programmed incorrectly by your DNA. Dr. Siegel's lab still continues to explore the reasons why the immune system attacks these cells specifically. Google "Siegel Lab" and you can read their latest publications.

I wouldn't worry about Parkinsons right now. While it does relate to Dopamine levels, it involves a different part of the brain, and no sense worrying about something you don't have yet, right?

Thanks for the reference on gluten intolerance and neurological conditions. I plan to read up on it. Stanford was doing some work in the 1970's on CNS allergies triggered by foods but I hear funding was cut off and they couldn't finish it. (I could be wrong but I know that publications on the subject are scarce.) My brother and neice have Celiac, so my sensitivity to gluten is not surprising. Interesting about the gene connnection...I'm so excited about that! I for sure have the Celiac genes in my family so maybe that explains my N, even though I don't have the HLA DQ1 marker Stanford discovered. Why didn't they look for the rest? That would make me very happy since I have no paper evidence of my N...just a lot of terrible symptoms that only fit the N diagnosis too well.

I am currently seeing a Naturopathic Doctor for my treatment and they are great! They are very supportive and have great ideas. They really understand diet, allergies, and the like. If you are really curious about exploring this kind of treatment, I highly suggest you get in touch with a Naturopath. Regular doctors just don't know enough about food and allergies and the relationship to diseases to be much help (and I know because I've looked for years.) You may find it's more than just wheat that's bothering you. I personally can't eat any grains or processed sugars, and about half the fruits. It can be hard at times, but if I'm strict, the results are great.

Keep fighting the good fight! smile.gif


#19 dogdreams

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Posted 30 September 2008 - 10:11 PM

OMG, Too Exhausted!

My mom has IBS, my brother & his daugher have Celiac, and I have N! I have never seen such a connection before but after seeing all your posts this makes so much sense to me! Wow!

AND my N was triggered by hormones. Birth control pills are evil. Blah.

#20 sleepydynamo

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Posted 03 November 2008 - 09:39 AM

I follow a modified low-carb diet and it makes a huge difference in my energy level. I found this by accident when we were looking to lower my fiance's cholesterol level.

No rice or potatoes
Whole grain bread and pasta only
Some barley or quinoia