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#1 kendradawn88

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Posted 02 August 2011 - 03:06 PM

through some research ive saw where gluten-free diet could help reduce some of the symptoms of N. has anyone tried it? it just seems so hard to try this diet and just wanted to know if it was even worth it?

#2 NarpocalypseNow

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Posted 02 August 2011 - 03:27 PM

through some research ive saw where gluten-free diet could help reduce some of the symptoms of N. has anyone tried it? it just seems so hard to try this diet and just wanted to know if it was even worth it?


I think it's always worth a try. Worst case scenario, nothing changes. That said, I only made it about 5 days before I got frustrated at the challenges of trying to find gluten free food, and the high cost of the food when I would find it. In my case, I didn't notice a bit of difference in 5 days. Maybe that wasn't long enough, but it made me feel better knowing I at least gave it a try to see if it would help.

#3 MadcapMissAdventurer

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Posted 19 August 2011 - 02:25 PM

through some research ive saw where gluten-free diet could help reduce some of the symptoms of N. has anyone tried it? it just seems so hard to try this diet and just wanted to know if it was even worth it?


I'm doing gluten free low carb. I'm in my 2nd month (47th day and counting). It took me about 3 months of research, a month of coming to terms with the gravity of the change, another month of prep and then just knuckling down and doing it (probably wouldn't have taken so long if I didn't have narcolepsy....it just seems to take us so much longer to accomplish things). It has been nothing short of miraculous for me. I had to stop taking Provigil to do it cuz it contains gluten. I began by following the Adkins diet plan, Induction phase since it pretty much cuts out the gluten. I added the "is that Gluten free" app to my phone cuz it has ingredient lists, medication lists, and brand name food lists that make it easy to check the labels of foods you eat. This app also helped at the grocery store.

I'm not saying it's been easy, but after the first 5 days it has been easier than I would have ever dreamed. I'm blogging about it in order to ensure I chronicle this monumental shift in my life. I've had lots of family support that has helped tremendously (biggest thing they did was agree to follow the plan within our home and agreed not to bring gluten items into the house, thus reducing tempation in spades). There is a website www.zombieinstitute.net that has become my bible. I'm following her advice to a "t". I've found her story inspirational and her website helpfully educational.

If you can make it past the first week you'll see that your brain begins to fire on all cylinders again and this will further energize the changes you have to make.

Again, not easy but easier than fighting the sleep monster all day.

#4 mom of a narcoleptic

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Posted 21 August 2011 - 08:33 AM

through some research ive saw where gluten-free diet could help reduce some of the symptoms of N. has anyone tried it? it just seems so hard to try this diet and just wanted to know if it was even worth it?


I have been doing research on this as well as my daughter has suffered with N for about 6 years. She decided to give it a try and I am doing it with her. We have both lost a few pounds and are feeling much better. While she has not decreased her meds, she does say she feels better and I do think we may be able to lessen her adderol. As for me, my arthritic tendencies (knees/back) have lessened. I am not hunger, do not crave carbs and really think it is truly a God-send for us. I have tried a few gluten free products....pasta, rice crackers, etc and they have all passed the taste test. Still trying to find a sandwich type bread that is acceptable. I don't find the diet too hard....we do look at labels and basically have omitted what all nutritionists say we ALL should. Get your mind set and try it. You have nothing to lose and everything to gain if it works for you!

#5 MadcapMissAdventurer

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Posted 31 August 2011 - 04:47 PM

Wow, gotta say that “mom of a narocleptic” is stronger than I am. I have to keep the carbs down along with the no gluten. I fire on all cylinders when I do and found that the narcolepsy stays controlled. I tried shopping for gluten free items and actually cried in the aisles because gluten free items are higher in carbs than their gluten FULL counterparts and even if they were equal in carbs they are still more than I can have. I’ve sworn off shopping for anything in the aisles. Send my husband to do the shopping for those things. I’m basically living “close to the source” in that I buy ingredients in their most natural form and then cook….most of these items can be found on the outskirts of the store (veggies, meats, dairy). Don’t get the idea that I am some kind of super gourmet because I’m not. The more simple and straight forward the process the better. I’ve come to really enjoy the taste of foods without all the other stuff on it.



My son is a narcoleptic and so is my mother. Son splits his time with me and his dad so he is only in my home part time. When he is with me, he eats gluten free/low carb but when he’s with his dad he “free ranges” as he calls it. He takes Nuvigil and has seen a pretty serious turnaround on it in that it takes care of the daytime sleepiness. We still have issues with habits he developed prior to diagnosis and with some of the other narco symptoms. Thank goodness there’s no cataplexy for him like there is with me.



Moving my mom in with us this weekend. She’s having some pretty hefty issues with the Narcolepsy and neither Provigil nor Nuvigil has worked. She’ll be following the no gluten/low carb diet with me and I’m excited to see how it works for her. Another case study so to speak. Wish us luck.



#6 Sleepy Sarah

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Posted 06 September 2011 - 03:18 PM

I have Celiac Disease (intolerance to gluten) and have narcolepsy. Gluten can make you feel drowsy, but even on the gluten free diet (was diagnosed with celiac about 8 years ago) I still was having problems. I was diagnosed with narcolepsy about a year and a half ago... so going on a gluten free diet may help, but for me I still had problems feeling sleepy 24/7.

#7 Sleepingcrow

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Posted 14 September 2011 - 11:43 PM

I've been very low complex carb for about 12 years. If I eat any in my home it's a rare moment and if so, whole grain, and if I eat bread it's, again, a rare moment and not in my home. Perhaps it's the gluten, but it certainly has eased my sluggishness. I've been med free for ten years.

As of a month ago, I've gone pretty much raw (about 90%). It's basically an elimination diet, and I'm adding foods, one at a time, for 3 days to see if I react to it in any way. If they pass, then I have them occasionally, if not, I stop seeing it as food. What I can tell you, is I feel more connected to my body than I have in 15 years. The bitter melon juice I've been drinking has pretty much eliminated my cataplexy. The cronic weaker than I should be feeling has gone away! I wish the narcolepsy was so easy, but I'm discovering one by one, how each thing affects me, and am amazed by how some of the things the world views as healthy i.e. celery, are the things that trigger not only an intense narcoleptic attack, but results in a full few days to a week of drugged sluggish in and out haze.

I hope you give gluten free eating a chance, I know you'll notice a difference. Mybe it will lead you to examine other things in your diet and/or lifestyle that could be potentially triggering you.

#8 Heidi L

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Posted 22 October 2011 - 08:18 PM

A low carb diet will alleviate narcolepsy symptoms because orexin cells are glucose sensitive.
It will not, however, stop the neurodegeneration. That is caused by gluten antibodies.

If you do not eliminate both from your diet, you will still have symptoms.

Much much more information on my website- which doesn't take donations from Drug Companies.

#9 severianthegreat

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Posted 23 October 2011 - 01:31 AM

I follow a diet similar to some others. It's an elimination diet called the Specific Carbohydrate Diet. I only eat monosaccerides, meaning no grains, no starches, no sucrose, etc. My only sugar is honey, fruit, and certain veggies. I also find home made 25-hour yogurt to be easy on my stomach and help digestion overall. I've seen a couple of sources indicating that 25-hour yogurt is almost lactose free. Given that I have a pretty bad lactose intolerance and regular store bought yogurt gives me trouble, my experience seems to agree with this.

At any rate, this type of diet is inherently gluten free and minimizes lactose intake. Gluten, grains, and beans are all very complex, difficult to digest foods. Aside from any other claimed health effects, avoiding anything too 'heavy' or 'complex' helps improve symptoms overall, especially drowsiness/sleepiness.

#10 Heidi L

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Posted 19 December 2011 - 02:30 PM

Just to be clear:

DQB1-0602 is a documented gluten intolerance gene.
Orexin cells are glucose sensitive. High blood sugar shuts them down.

Diet is the NUMBER ONE factor in the presentation of Narcolepsy.
Why do you suppose Narcolepsy Network doesn't inform you of this?

#11 ironhands

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Posted 26 August 2013 - 06:56 PM

The last thing I tried before doing my sleep studies was going gluten free, and I did notice immediate improvement.  I hadn't been diagnosed with N and that point - and am likely going to be in the next weeks.

 

It's my understanding that gluten can trigger autoimmune responses, and likely related to the loss of orexin cells, but there's still a lot of research to be done.

 

 

 

Heidi, I just checked your site.  Wow.  I ended up doing this backwards.  Seems most try gluten free after being diagnosed.  I did it prior, with no knowledge of N, and felt worlds better.  There's no question in my mind they are very very closely related.



#12 sk8aplexy

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Posted 26 August 2013 - 09:08 PM

I responded to you ironhands, in more depth on my experience going gluten free, in the 'narcolepsy with migraines' post...

 

However, I'll add what I think may be interesting to you.  Below, is speaking from my understanding, from reading a lot over the last few years and also attending a discussion event thing where Stanfords Narcolepsy Center, main Doctor (Mignot) spoke.

The autoimmune response, is not entirely understood yet, with Narcolepsy.  It seems to occur though, early on in the disease, and does the damage which then, is basically damage done.

I think they're not sure that, or whether, it is recurring? 

That is to say, there is 'no cure' or known cure, at this time.  There is also, no 100% narcolepsy test.

The meds are strictly, 'only symptomatic'.   The doctor specifically spoke of the importance that persons pay close attention, especially over the first few months, on any med/s.  To get off any, where the benefit is outweighed by negatives.  That with the long term use of the meds, there can be very negative side effects.  Some take to the meds with no problems, and others do not take to them well at all (I'm one of the others..). 

He spoke about how many people, through 'lifestyle adjustments' find great relief, and some others do not.

Also he mentioned, how some people will seemingly basically one day find themselves better for no explained reason, yet that is not very common.

In fact, stating that some that have miraculously found themselves better, who have had low hypocretin/orexin levels prior, seemingly have more normalized levels...

 

That is all to say, there are still a lot of unknowns and oddities.  Narcolepsy is all about that, it seems...



#13 ironhands

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Posted 26 August 2013 - 10:40 PM

I just found it really strange, that before I even considered the possibility of N that I'd connected my symptoms to gluten.  

 

Yeah, from what I've seen so far there's nothing more than the treatment of symptoms, other than some orexin nasal sprays for lab animals, but managing gluten really helped me months ago.

 

To see now that DQB1-0602 is *both* narcolepsy and gluten intolerance floored me.  There's only one symptom I've been having all of my life that doesn't fit into this nice little package, but, I'm sure it's related.  That's my strange weakness/hunger/lightheaded/salivating states.  I've referred to it as "zombied" in the past.  I'm wondering if it's related to a cataplexy.  I thought it was blood sugar related, but no, it's been ruled out.  I'm wondering now if it's connected to the orexin/ghrelin system, considering it seems to start as a tightening in my stomach.



#14 IdiopathicHypersomniac

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Posted 27 August 2013 - 12:08 AM

I went gluten free for a month -- didn't help.



#15 ironhands

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Posted 27 August 2013 - 09:22 AM

That's unfortunate.  I wonder if there's a point where it will no longer make an impact. 

 

My symptoms are very mild compared to many on here, which may be why it does work for me to some extent.  There's an improvement, but not quite enough to say I'm "cured".