7 replies to this topic

[bee]

I started this thread three months ago when someone suggested I try a gluten-free diet to manage my narcolepsy. I tried the diet and updated a couple of weeks later to say that it had decreased my symptoms.

Now, after three full months of a strict gluten free diet, ALL symptoms of my narcolepsy are GONE. No more EDS, sleep paralysis, or even cataplexy - the change is so dramatic that sometimes I can't believe it happened. Just this summer, going a day without Provigil was such a struggle, and now I haven't taken any in over a month and I feel better than I have in years.

I did (and still do) have a definitive diagnosis of narcolepsy from my neurologist; the results of my sleep study and MSLT from two years ago were very conclusive. My neurologist assured me that this diet would not work, but it has. Maybe I was misdiagnosed in the first place, or maybe this just works for me, but I would urge anyone just to give it a try, especially if your N symptoms get a lot worse after mealtimes (as mine did).

[Narcolepsy Network]

The article "Could Brain Allergies be Causing Your Narcolepsy Symptoms?" in the Spring 2006 issue of The Network (Narcolepsy Network's quarterly newsletter) covered the story of a young woman diagnosed with narcolepsy who achieved complete relief of symptoms by eliminating foods in the nightshade family. (This article/issue is available to current dues-paying members.)

Individuals who find that the elimination of specific substances from their diets leads to a complete remission of narcolepsy symptoms may have secondary rather than primary narcolepsy. In other words, the narcolepsy symptoms are secondary to another medical condition: a brain allergy. (Secondary narcolepsy may also be caused by traumatic brain injury, brain lesions or tumors, multiple sclerosis, etc.)

There isn't much research in this area, although it would seem warranted. Please continue to report positive results obtained from food elimination; if enough people make their experiences known, it may spark the interest of researchers.

Narcolepsy Network

[Heidi L]

So what exactly distinguishes primary narcolepsy from secondary narcolepsy? In the absence of targeted research it is not valid to state categorically that "primary narcolepsy" is not a result of an autoimmune reaction. Head trauma, brain injury and multiple sclerosis compromise the blood-brain-barrier which would allow for immunological attack.

I too have gone into complete remission from narcolepsy on a gluten free diet. Only to find out I also have a nightshade allergy...

Thanks for the update Bee. Good to hear from you again. Glad to hear you are doing so incredibly well!
-H

[Narcolepsy Network]

Hi Heidi:

Yes, it is possible that all narcolepsy is caused by a brain allergy. There is no research to rule this out. But I do have some rationale for suggesting that narcolepsy induced by brain allergies *may* be considered secondary narcolepsy.

The most important point to be made here is that it's essential to put this possibility in perspective for the many readers of this Message Board so that each person can better understand how this possibility might apply to them personally.

Your experience indicates that it is possible to eliminate narcolepsy symptoms through diet. A few others have reported similar results. No doubt many patients will want to determine if they can achieve these results. We would not discourage individuals to test themselves provided they do so under the care of a physician and/or nutritional expert. However, we must point out that results will almost inevitably vary.

Hypocretin research tells us that there are two subgroups within the narcolepsy population: patients whose hypocretin-producing cells have been destroyed, leading to cataplexy, and patients who have normal hypocretin levels and do not experience typical cataplexy (i.e., triggered by emotional stimuli). Unfortunately, most narcolepsy patients have not had their hypocretin levels tested. Although the presence or lack of clear-cut cataplexy is a good predictor of hypocretin status, there are many patients who have mild or atypical cataplexy or who mistakenly believe they have cataplexy and therefore can't be at all confident to judge which group they belong to.

A change in diet may improve but would not be expected to substantially eliminate symptoms in hypocretin-deficient PWN unless this change in diet also leads to a regeneration of the brain cells they have lost ... a very unlikely scenario.

Those patients who are not deficient in hypocretin could conceivably achieve complete remission of narcolepsy symptoms if an ingested substance merely interferes with the use or transport of the hypocretins (or another intact brain chemical) and is eliminated from the diet.

The research necessary to establish a role for brain allergies in the development of all narcolepsy might take this path:

- Since only the group with intact hypocretins may be able to achieve complete symptom relief from a change in diet, it makes sense research would begin with this group. Even before the underlying process is understood, findings along these lines would likely lead to a change in recommended treatment for this group. Differing treatment may lead to a revision in the diagnostic criteria for narcolepsy to add brain allergies to the list of conditions that must be ruled out in diagnosing narcolepsy. Until and unless it is proven that brain allergies cause narcolepsy with cataplexy, narcolepsy caused brain allergies would likely be considered secondary narcolepsy.

- Researchers would have to determine why some patients lose brain cells and others don't. If a genetic factor differentiates the two groups, there is a basis for considering these groups distinct.

-Still, there are rare cases where human narcolepsy is caused by a defect in the receptor gene. In the end, only these cases may be considered primary narcolepsy.

-Discoveries relating to brain allergies would have different implications for current patients. Those with normal hypocretins would be prescribed diet therapy; those lacking hypocretins would continue with established treatments.

-A genetic test should be possible at birth to identify individuals who can be expected to develop narcolepsy in the absence of dietary limitations. Thus, prevention in future generations should be possible.

I hope the above is helpful to PWN who read this thread.

Sharon

[iowa4est]

So what exactly distinguishes primary narcolepsy from secondary narcolepsy? In the absence of targeted research it is not valid to state categorically that "primary narcolepsy" is not a result of an autoimmune reaction. Head trauma, brain injury and multiple sclerosis compromise the blood-brain-barrier which would allow for immunological attack.

I too have gone into complete remission from narcolepsy on a gluten free diet. Only to find out I also have a nightshade allergy...

Thanks for the update Bee. Good to hear from you again. Glad to hear you are doing so incredibly well!
-H

How did you find out that you have a nightshade allergy?

[Kimberly]

How did you find out that you have a nightshade allergy?

Iowa,

I can't answer for Bee, but one way to discover food allergies is to undertake something called an "elimination diet" or a "rotation diet."

Basically, for a period of time you eat only the foods known to be the least allergenic. Then, a week at a time, you introduce new food based on "food groups." New symptoms or recurrence of symptoms = potential allergies to those foods. It is recommend to do this under the guidance of a physician, and to keep a food diary. Of course, if you start to keep a food diary in advance and notice that you feel crappy when you eat certain things, that could be a clue to you right there.

You can also go to an allergist to be tested -- there are different methods, including blood draw and skin testing. I had a simple blood draw once that told me I was mildly allergic to bananas. No wonder I always hated bananas as a kid! Not enough to garner a major allergic reaction, but enough to make me feel bad after I ate them.

This page seems to have a decent description of an elimination diet. http://www.alternati...nutrition.shtml

K

[ladyjae]

I am just seeing this and it makes a lot of sense to me. I am Certified in Nutritional Healing, and find that many people have allergies, or reactions to foods that they did not know effected them. I am amazed constantly at what I find making people ill. Use of the elimination diet is a great tool to find out whats doing what to a person.
I know I react strongly to dairy products, and can not have them- cow dairy that is. I can have goat and sheep. I have a son the same way his reactions to milk are different than mine. I have increase in pain, sleepier, and other issues. he is sick, violent, aggressive, does not retain what he learns, severe constipation and more. So we are 2 people reacting to the same food differently. If 2 people in 1 family can react so different then it makes sense to me that through the general population people react to a variety of foods different. I would love to know more about other foods thought to effect Narcolepsy and/or cataplexy in good or bad ways.
I may do some research of my own on this. I am not having good luck in treatment, use a combination of medication and natural approach to manage my days. But would love to feel better or avoid medications if possible. Tired of side effects. I was on Xyrem for a while and loved it but found my pain from other issues unbearable, tried several suggestions but it did not help. Was considering another try recently but its not happened and I am unsure it will.
OK NOW I AM RAMBLING! lol

Lady Jae narco~mom

<!--quoteo(post=5083:date=Sep 10 2008, 04:14 AM:name=iowa4est)--><div class='quotetop'>QUOTE (iowa4est @ Sep 10 2008, 04:14 AM) <a href="index.php?act=findpost&pid=5083"><{POST_SNAPBACK}></a></div><div class='quotemain'><!--quotec-->How did you find out that you have a nightshade allergy?<!--QuoteEnd--></div><!--QuoteEEnd-->

Iowa,

I can't answer for Bee, but one way to discover food allergies is to undertake something called an "elimination diet" or a "rotation diet."

Basically, for a period of time you eat only the foods known to be the least allergenic. Then, a week at a time, you introduce new food based on "food groups." New symptoms or recurrence of symptoms = potential allergies to those foods. It is recommend to do this under the guidance of a physician, and to keep a food diary. Of course, if you start to keep a food diary in advance and notice that you feel crappy when you eat certain things, that could be a clue to you right there.

You can also go to an allergist to be tested -- there are different methods, including blood draw and skin testing. I had a simple blood draw once that told me I was mildly allergic to bananas. No wonder I always hated bananas as a kid! Not enough to garner a major allergic reaction, but enough to make me feel bad after I ate them.

This page seems to have a decent description of an elimination diet. <a href="http://www.alternati...utrition.shtml" target="_blank">http://www.alternati...ition.shtml</a>

K

[TiredAgain]

I just read this and I know it's old but I'm going to post anyway.

My son has what is called delayed allergies which is found out by taking a blood test for IGG allergies not IGE. When he was 15mths old I was told he was allergic to milk so I started giving him soy products and he still had problems, so we did blood work and everything he really like he was allergic to. I had to take him off all those foods for like 3 wks and then I was able to give him those foods every 4 days. So if he had chicken on Monday he couldn't have it again till Friday. His stomach got better within a month.

Everything you are talking about seems to be the same thing, so it makes a lot of sense to me. I think I will get tested.