Narcolepsy?

[angielackner]

so i have not been officially diagnosed with celiac...as i "flunked" the blood tests and biopsies...but my GI doc said my insides "looked" like i had it, and we might have just "missed" with the biopsies...but i feel better gluten free, and am not about to go back on a gluten diet just to do another endoscopy...and my doc agrees with me.

so, what i'm wondering is, i also have been diagnosed with mild narcolepsy...and normally take ritalin for it (but went off it for my pregnancy, but am very much looking forward to going back on it)...can narcolepsy be related to celiac? or is it completely different? anyone else on here suffer from narcolepsy at all?

thanks,

angie

[plantime]

Good question. Any one have any answers?

[jnifred]

My Grandpa suffered from Narcolepsy.....no fun. Anyway, from what I know it doesn't seem to have any relationship to Celiac.....I'm pretty sure it is not an auto-immune disease, like everything else that seems to be associated with Celiac. Good luck

[Guest Robbin]

Interesting question--not sure about the relationship, but I had a dear aunt that had every celiac symptom in the book-never dx-but she had narcolepsy too. This is making me wonder. Why not this too, as it seems to affect other type of sleep problems. I would look into it a little more. Maybe being gluten-free for a longer period of time will show some improvements. I hope so. Keep us posted on this & take care!

[plantime]

Could it be caused by the malabsorption? Does a lack of vitamins and minerals cause excessive sleepiness? I know it causes fatigue, is sleepiness the same?

[angielackner]

hmmm...i think i will really have to see what happens with my narcolepsy and gluten free diet after i deliver this baby. i have only been gluten free since last february, and got preg in july...and have had a pretty miserable pregnancy in terms of pain and nausea...so its been hard to say if my gluten-free diet is healing anything...i am looking forward to seeing those results a few more months from now. i will let you know how the narcolepsy shapes up...in the meantime, i will ask my GI and sleep docs when i have followups with them this summer. thanx for the input

angie

[jcc]

so i have not been officially diagnosed with celiac...as i "flunked" the blood tests and biopsies...but my GI doc said my insides "looked" like i had it, and we might have just "missed" with the biopsies...but i feel better gluten free, and am not about to go back on a gluten diet just to do another endoscopy...and my doc agrees with me.

so, what i'm wondering is, i also have been diagnosed with mild narcolepsy...and normally take ritalin for it (but went off it for my pregnancy, but am very much looking forward to going back on it)...can narcolepsy be related to celiac? or is it completely different? anyone else on here suffer from narcolepsy at all?

thanks,

angie

Angie,

I have run across a connection between gluten sensitivity and narcolepsy...and the DQ1 gene. While the main celiac genes are HLA DQ2 and DQ8, a couple of different researchers have found that HLA DQ1 is associated with gluten sensitivity that rarely shows with villous atrophy, but can cause GI, neurological, and other symptoms. It was googling about DQ1 (my family has this) that I came across the narcolepsy connection.

You might want to do some googling of your own on "narcolepsy gluten sensitivity" or "narcolepsy HLA DQ1". Have you ever had any of the genetic testing done?

You might also find this of interest..a little blurb on the ATkins diet...hmmm....could it be the reduced gluten making the difference?

Open Original Shared Link

Cara

[Lynxear]

Hmmmmm....I have not been diagnosed as Celiac...YET!!! but more and more I am thinking that this is my root problem.

I am borderline narcoleptic. I have undergone a sleep study to prove it. During the study I got 10 hours of very light sleep....relatively normal....but following this sleep every hour for 5 following hours you are asked to fall asleep....after 10 hours of sleep I could do this within 5 minutes of being asked....this is not normal.

Hence I am borderline and have to be very careful driving distances...there are various tests to decide if you may be narcoleptic, prior to being subjected to a sleep study...they include:

1. Have you ever fallen asleep at a movie theatre or in front of the TV when you REALLY wanted to watch that show?

2. Do you dream and wake up from a terrifying dream...but not realize that you are awake and live the dream for a while?

3. Do you drive your car on a highway but don't know where you are until the next signpost goes by?

4. Do you intend to drive to the mall, but suddenly realize you are driving to work? (automatic behavior)

5. Finally....and this was the confirming condition for me....do you have cataplexy? This is the condition where you lose muscle control when excited....literally "fall down laughing" or paralized speech lasting several seconds. I have this....very embarrassing...for me it happens unexpectedly when I find something funny or crack a joke...rarely but sometimes when I am angry.

So that is how you suspect you have narcolepsy....most GP's have no clue how to diagnose this disease.

back on topic

My health has been a series of problems in the past 8 years. I have always felt there is a single root cause but doctors seem to treat you one disease symptom at a time. I struggle with diabetes, high blood pressure , high blood fats and to a lesser extent narcolepsy. The blood pressure and narcolepsy is manageable but the others are out of control.

I have felt that wheat was my problem as I feel slightly bloated eating bread (I LOVE the chewy Whole Grain breads that you are SUPPOSED to eat). At one time I followed a naturopath's "cleansing diet" for 12 days which among other foods eliminates wheat....and discovered a sudden loss of blood fats. I taught ESL in Thailand for 6 months where there is little or no wheat in their diet. At the end of the 6 months I lost 35 lbs, my diabetes with medication was rock solid normal, my blood fats were high normal.

Since returning to Canada, 2 years later I cannot control my diabetes or blood fats with medication.

I am coming to the conclusion that wheat intolerance is the ROOT of my problem. It seems common to all my ailments. This forum is very interesting to me.

[ms-sillyak-screwed]

Lynxear -- Welcome newbie you've found the right spot. The people here are wonderful you will get many answers to a lot of things now.

I looked at the test...

1.) I don't watch TV only the Sopranos... and haven't been on a date to the movies in 5 years.

2.) Open Original Shared Link

3.) Nope

4.) Sometime I wonder where I'm going.

5.) Nope

I wonder if I'm just an insominac?

As far as sleep goes I'm begining to wonder what to do. I can't take normal sleeping meds cause they are filled with corn, dairy or gluten things that make me sicker. I applied last week for a sleep study by a drug company. They turned me down I'm not healthy enough. I was very disappointed.

I'm trying something different I wear little black eye masks so it forces me to keep my eyes closed and not look around the room to follow the light. No stimulation TV clocks or anything in my room it doesn't really matter.

My problem is right now its 3:00 a.m. east coast time and I should be sleeping. I can't fall asleep lately. I toss and turn until 5 or 6 a.m and I hear the birds chirping. I thought it was my thyroid meds had me in the hyper-mode, but thats not it. I do end up getting 7, 8, 9 or 10 hours sleep when I do fall asleep. I could never hold down a job if I had too. Last night I had a dream I was in a plane crash. I was in th ecockpit with the pilot could see the runway and he diverted to a crash. I asked him where he was going. Silly maybe I miss not having my plane anymore. lol

I do have a cousin that has stage 4 narcolepsy and she has just developed a thyroid goiter I think there is some connection to her not getting sleep and the thyroid problem. She was tested and her levels are fine she said. I made her go for a celiac panel test. She said it was negative. I don't think she has enough gluten in her system to get a true reading.

jcc -- thanx for the posting I'm going to pass that information on to her. Do you have any reference material I can email her a link?

Goodnight & Sleep Well!

[gypsy]

Hi Angie, Lynxear and All,

My father and brother have narcolepsy and my mother has MS, which are autoimmune disorders as noted by others on this forum. I was diagnosed as having borderline narcolepsy some years ago. I took Provigil for it, but could still barely function and eventually had to quit my job. I was also misdiagnosed as having irritable bowel syndrome over 30 years ago. I was diagnosed with gluten sensitivity 3 years ago through testing by Enterolab, and since I stopped eating gluten my sleep disorder has gone away! I believe that my "sleep disorder" was due to the malabsorption and brain fog caused by eating gluten. If I accidentally eat gluten I'm slammed by the same overwhelming fatigue and brain fog that I experienced when I was diagnosed with narcolepsy (not to mention abdominal cramps for 3 weeks). I also avoid dairy (casein), eggs, yeast, and soy due to having tested positive for antibodies to these.

Unfortunately, no one else in my family will get tested for gluten sensitivity/celiac disease, but I believe it may be at the root of their narcolepsy and possibly MS, as well.

I just wanted you to know that you are not alone in what you are experiencing. I also want you to know that there is hope of feeling much better. Not only did my "borderline narcolepsy" go away, I have so much energy now that I've changed careers and started my own successful business.

Gypsy

[Lynxear]

I looked at the test...

1.) I don't watch TV only the Sopranos... and haven't been on a date to the movies in 5 years.

2.) Open Original Shared Link

3.) Nope

4.) Sometime I wonder where I'm going.

5.) Nope

I wonder if I'm just an insominac?

I don't think you are narcoleptic.

I don't have trouble falling asleep. The difficulty is staying asleep. Those that are truly narcoleptic are great power nappers. The desire for sleep is overpowering. My ex-wife called me lazy since I would fall asleep on the couch watching TV all the time. I would play chess with my son and fall asleep in the middle of the game...he would patiently wait 10-15 minutes and I would wake up and we would continue to play.

As I said we can power nap easily and after 15 minutes we feel quite refreshed. Some of my near-miss problems are quite funny in retrospect. Here is an example of a terrifying dream, that I have been talking about:

*******************************************************************************

I was a traveling industrial instrument salesman. I had to drive for 3, 4, 5 hours at a stretch very often. I would wear a dooze alarm ( a device woren behind your ear, that goes into alarm if your head nods rapidly forward.) It doesn't really work if you fall deeply into sleep but it was comforting to wear.

Most narcoleptics have a bad time of day where you can easily fall asleep...mine is between 4:00pm to 6:00pm...I knew this and would make a point of stopping the car and having a meal, lots of coffee and play 3-4 videogames to get wired and continue my journey after 6:30pm

On this particular day I felt myself having long blinks while I was driving. So I pulled into a service station lot in front of the restaurant. I had to be somewhere in 2 hours so I decided to take a nap....have a couple of cups of coffee in the restaurant....then continue on.

I reclined my bucket seat, turned the radio down low, locked the doors and opened the window a crack for air and promptly feel asleep. (we can do that in Canada and not get carjacked...usually )

Well I dreamt I was still driving my car!! I flicked my eyes open and saw that I was out of control....heading right for the restaurant window!! I then (physically) braced myself against the steering wheel, sounded the horn and slammed my feet on the brakes. Everyone was looking at me...of course....I'm going to crash any second now!!!!......then 10 seconds later....I realize....the car isn't moving..........

I was sooooooooo embarrassed....I know exactly what it feels like to be in an out-of-control car before it crashes.

I could not get out of the car and get a coffee. I started the car.....slipped it into gear and left immediately and stopped at another coffeshop 10 miles further.

******************************************

Being called borderline narcoleptic or full blown requires a sleep study. 99% of all doctors in general practise know nothing about this disease. There is no cure that I know of....those that are extreme take stimulants (amphetimines) to get through the day. I could get them but don't want to get addicted to them. I can cope for the most part with no problems....boring meetings were a problem though.

[gypsy]

[******************************************

Being called borderline narcoleptic or full blown requires a sleep study. 99% of all doctors in general practise know nothing about this disease. There is no cure that I know of....those that are extreme take stimulants (amphetimines) to get through the day. I could get them but don't want to get addicted to them. I can cope for the most part with no problems....boring meetings were a problem though.

[plantime]

My daughter has trouble staying asleep, so I bought her some melatonin. The man at the whole foods store said it sometimes causes very vivid dreams. Has anyone found that to be so?

[Lynxear]

[i take melatonin and drink cammomile tea to help me stay asleep before I go to bed at night. I was diagnosed with "idiopathic hypersomnia/borderline narcolepsy." I had a full blown sleep study. I fell asleep within 5 minutes, but I did not go immediately into REM as is typical of narcolepsy. My sleep patterns were constantly disrupted throughout the night (insomnia).

My study was similar for the night sleep....I did at that time sleep the whole night but I was told that is was not very deep. It was the fact that I could fall asleep on the hour within 5 minutes of being asked that showed me as borderline narcoleptic.

Do you have the cataplexy as well.....this was the final straw that identified the disease. The two are linked.

[My typical day included about 4-6 mini naps of 10-20 minutes at a time. When I awoke from these mini-naps I was refreshed for about another 2 hours, then the OVERWHELMING fatigue would hit once again. I was pretty good at keeping my eyes open during conversations at work, but knew I was not laying down any memory of what someone was saying to me because I was already partly asleep. Just getting through each day was an excrutiating struggle. I took naps under my desk, in my car, the bathroom, anywhere that I could. I did not expect my sleep disorder to disappear when I went gluten and dairy free. It was a miracle to me that it did go away. I still take melatonin to help me sleep through the night. I've taken it for years without any problems. I only hope that for others, your sleep problems will improve with a gluten free diet. Also, rule out other food sensitivities.

My problems really only occur when I am passive. A boring meeting would kill me for trying to stay awake. If I drove a car...it was not too bad...unless I was in my bad time period. However, if I was a passenger I would fall asleep easily.

The cataplexy is a real problem still today. It sneaks up on me causing me to slur my words...twitches in my face and my arms fall as though they have no muscles...this happens to my legs occassionally too. It happens during times of emotion...rarely when I am angry (thank God!!) but usually when I laugh at or crack a joke. I camoflague it well. I used to deliver 4 seminars/week as a salesman and I had to turn away for a few seconds, pretending to cough if I could until I composed myself.

With friends or relatives...I often saw concern in their eyes when I was unsuccessful at camoflague. I would then explian the problem to them so they would understand. My son understands my situation and covers for me sometimes....he is a great guy.

It is unclear whether going wheat-free two weeks ago is the cause or if the new medication for diabetes that seems to be working is the cause but I am sleeping much better lately. I sleep now 3-4 hours before waking up and falling back to sleep. Before this I would wake up on the hour.

One thing for sure though...I find I have more energy and less tiredness in my eyes as the sugar in them disappears.....and to quote Martha....that is a good thing!

[ms-sillyak-screwed]

No Narcolepsy for me... oh good. But you mentioned "twitches in my face" I get that a lot when I haven't had enough sleep or I'm nervous, and it it happens through out the day I end up with a migraine. I also suffer from the restless leg sometimes. Is that to do with lack of sleep?

Another thing that happens to me and my cousin with stage 4 narcolepsy mentioned it to me and it has happened to me. It's strange to describle almost odd. I get an odd feeling in the back of my head almost like a vein or rope is being tugged quickly, yanked or snapped, or it is being twisted and qanked really hard. Follow me? It hurts. And it is noticeable. I'll rub my head and sit down for a second. And it goes away. It doesn't happen very often. Perhaps 4 times in my life, only when I'm ultra stressed and super tired. My cousin told me it is directly related to sleep and she knew what it was and said the name. Anyone know what it is?

I found this I'd like to add here about Accredited Sleep Disorders Centers throught out the USA.

Open Original Shared Link

[Lynxear]

no...I never had that happen....nor do I suffer from headaches either.

To get a sleep study done on you in Canada is a multi-step (thankfully covered by medicare) process. First you convince your GP that you have a suspected problem. From there you are referred to a neurologist where he basically confirms the suspicion of narcolepsy...then you are referred for a sleep study. At least that was the process for me.

I was fortunate in that Calgary had such a facility (this was 10 years ago) I think they are more common now.

[angielackner]

my narcolepsy is fairly mild...i dont have the cataplexy...thank God...but i went in for a sleep study to see if i was hitting REM sleep due to what we thought was fibromyalgia at the time (now thinking its celiac instead)...and so the doc did the overnight study, then the nap study...and he said i slept ok for the overnight, but the nap study, i too fell asleep within 5 mins each time, i went almost immediately to REM sleep. that was so the opposite of the diagnosis i was expecting! i can keep myself awake while driving and doing things, but if given any kind of opportunity to sleep, i will. ritalin has been a life saver for me to function without sleepiness...i am looking forward to going back on it after this pregnancy, and when i'm done nursing...so it will still be awhile, but so worth it.

angie

[gotrem]

I have Narcolepsy, was dx one year ago, and found this site by serendipity. In Narcolepsy, a person experiences sleep on set REM. It is the MARKER for the dz of Narcolepsy. It is a REM sleep state disorder. The narcoleptic also experiences REM state intrusions into thier waking state. Basically, the things of your dreams step into your reality, causing hallucinations. Another phenomena, is cataplexy, which is loss of muscle control. When you are dreaming, the body becomes paralyzed...or you would be getting up and physically acting out your dreams (which is a different sleep disorder). Those with cataplexy loose muscle control because the REM state has unexpectedly gained control.

Many people with Narcolepsy end up being very overweight. The disorder slows down the burning of calories. It also interfers with the immune systems abilities to operate effectively, because the immune system does all it's work in the 3rd and 4th sleep stages. People with Narcolepsy have immune deficiency. Type 2 diabetes is common for the Narcoleptic

If they are not experiencing what I described above, they are experiencing what I have been trying to find the answer for...the inability to maintain a healthy weight. Over the last 5 years, my weight has gradually decreased, to the point I am frightened. Doctors tell me "well you are on amphetamine" and look no further. I stopped the use of stimulants and two months later I had dropped another five pounds. I finally got them to run some tests, but everything is okay (except for anemia).

That is how I found this site. I was surfing the internet using "unexplained weightloss" as my criteria, and came accross a Celiac Disease web site. It had alot of info that seemed to "fit". Then I saw mention of a rash that accompanied the disorder, and clicked on the amage. What came up blew me out of the water! I had what I was told to be excema from the time I was two. It was all over my legs, face, arms, toes...small water blisterrs that itched like crazy, and turned into crusts after the blister burst. My father, maternal Grandmother, sister, and mother also suffered from the same rash, but none as severly as I. I am still dazed by my luck in finding the site. The more I have read, the more convinced I am that MY ENTIRE FAMILY HAS THIS DISORDER.

Then I typed in Narcolepsy, Celiac Disease, on Google and hit the "I'm feeling lucky" button and this web site and topic was majically placed in my lap. I think that Narcolepsy is one of the bodies natural responses to protect itself from the immune system. Narcolepsy disables the immune system and prevents it from harming the body. To my mind, Narcolepsy was the better choice...over death. Narcolepsy IS ANOTHER ASSOCIATION TO ADD TO THE DISORDERS THIS DISEASE CREATES. If anyone on this board experiences severe fatigue or sleepiness, and wants to check out info on Narcolepsy (any sleep disorder would help the body protect itself from the immune system), they can check out the web site of Talk about Sleep:

Open Original Shared Link

[Lister]

lately i have been extremly tired by the time it hits around 3pm in the day i can fall asleep if keep my eyes closed for more then 5 mintues but i can keep myself awake would this be considerd narcolepsy or probably just me detoxing from going gluten free 2 weeks ago?

[caek-is-a-lie]

I think that Narcolepsy is one of the bodies natural responses to protect itself from the immune system. Narcolepsy disables the immune system and prevents it from harming the body. To my mind, Narcolepsy was the better choice...over death.

I know this is an old post, but I have to step in here to make a comment about this. This is not true. Research has shown that Narcolepsy is a very likely an autoimmune disorder, just like Celiac. During disease onset, the immune system kills off 90% of the hypocretin cells in the hypothalamus. And, just like Celiac, the triggers and predisposition to the disease are still unclear.

Unlike Celiac Disease, however, once those cells are gone, they're gone. You can't just stop eating something to let the brain heal. There is no regeneration of those cells, no recovery of any kind (although the remaining cells do grow larger to compensate in some instances.) Immunosuppression of Narcoleptic Doberman pups was shown to prevent symptom onset until medications were decreased or eliminated. While it may not be a viable treatment or preventative measure in humans, it does prove the point. Add that to Stanford's discovery of the HLA marker for Narcolepsy, and I can safely say that Narcolepsy does not disable the immune system. It is a result of a faulty immune system.

[gsan]

Just came across this forum and no one has posted since 2008? Went through the sleep study and was subsequently diagnosed with narcoplepsy, which has been slowly progressing for 35 years. Was up to 2 Modafinil/day to stave off the Excessive Daytime Sleepiness(EDS). One month ago, I was diagnosed by my kinesiologist with gluten intolerance(found no other intolerances or allergies), and immediately went gluten free. Within two weeks, I was off the Modafinil completely. There must be a correlation between the gluten molecule and the autoimmune response by the brain, as improved nutrient absorption through the gut alone would not explain such a rapid turn of events. Perhaps EDS and narcolepsy are two seperate disease mechanisms? Have noticed that re-exposure to gluten brings on EDS the next day and lasts for several days. While it is life changing to have that fog/veil of sleepiness lifted, I have yet to see if being gluten-free will improve or halt the progression of the other part of narcolepsy, that of cataplexy during intense emotion (mine is laughter) and occasionally during sleep/dreaming(where one is completely aware that one is unable to immediately wake up because it feels like one is locked in slow motion - scary). Can anyone comment?

[Ginkgo100]

Could it be caused by the malabsorption? Does a lack of vitamins and minerals cause excessive sleepiness? I know it causes fatigue, is sleepiness the same?

Hi,

I have been diagnosed with narcolepsy for about two years. It is a neurological disorder that is not caused by nutritional deficiencies. Narcolepsy symptoms result from the brain's inability to regulate sleep. Practically all narcoleptics suffer from "excessive daytime sleepiness" or EDS, but most people with EDS do not have narcolepsy. (EDS is not quite the same as fatigue; EDS is generally relieved, at least briefly, by naps, unlike fatigue. I've learned to tell the difference in myself but it developing awareness of myself.) In addition, narcoleptics have at least two of the following additional symptoms (this is according to my neurologist): sleep attacks (falling asleep randomly during the day

[Ginkgo100]

lately i have been extremly tired by the time it hits around 3pm in the day i can fall asleep if keep my eyes closed for more then 5 mintues but i can keep myself awake would this be considerd narcolepsy or probably just me detoxing from going gluten free 2 weeks ago?

This sounds like Excessive Daytime Sleepiness (EDS), but most people with EDS do not have narcolepsy. Almost any sleep disorder can cause it (e.g. obstructive sleep apnea, restless legs syndrome, insomnia), and it has other causes too, like chronic sleep deprivation. (Ask yourself, how much sleep do you get at night lately? If it's less than 7 hours, you are probably just sleep-deprived.) Does this sleepy time of day coincide with a meal? It's normal to feel sleepy after lunch. Since you just changed your diet, maybe the different diet is making the normal after-lunch sleepiness more noticeable. Try taking the Open Original Shared Link test. If you score a 9 or higher, and you're getting your normal amount of sleep, you should make an appointment with a sleep specialist (i.e. a neurologist). It COULD be narcolepsy if you have some of the other symptoms, but it's not very likely.

[kareng]

This sounds like Excessive Daytime Sleepiness (EDS), but most people with EDS do not have narcolepsy. Almost any sleep disorder can cause it (e.g. obstructive sleep apnea, restless legs syndrome, insomnia), and it has other causes too, like chronic sleep deprivation. (Ask yourself, how much sleep do you get at night lately? If it's less than 7 hours, you are probably just sleep-deprived.) Does this sleepy time of day coincide with a meal? It's normal to feel sleepy after lunch. Since you just changed your diet, maybe the different diet is making the normal after-lunch sleepiness more noticeable. Try taking the Open Original Shared Link test. If you score a 9 or higher, and you're getting your normal amount of sleep, you should make an appointment with a sleep specialist (i.e. a neurologist). It COULD be narcolepsy if you have some of the other symptoms, but it's not very likely.

Just to let you know, you are responding to a post that is over 5 years old. Many of these posters do not come on here anymore to read the posts.