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Narcolepsy & Gluten


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#1 FoxersArtist

 
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Posted 19 June 2008 - 02:36 PM

Just recently we have come to discover that my husband has narcolepsy. His sleep problems have caused many problems both at home and at work, but we had previously just chalked it up to him being lazy or out of control of himself for no good reason (poor guy!) When I found out that I had celiac, Hubby joined in and went gluten free too. The narcolepsy went away within a week or so but returned a few days ago when Hubby gutened himself. It was this reaction that lead us to question his sleep behaviors and discover the underlying condition. Now we are wondering if Hubby is celiac too. Does anyone have any info on Narcolepsy and Gluten? I have read a few things that ties the sleep disorder to auto immune disease, specifically celiac, but this is only a "theory." Did anyone else have narcolepsy that went away after going gluten free? Thanks.
-Anna
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Crohn's like GI symptoms, Multiple Sclerosis like Gluten Ataxia, Arthritis like joint pain, Myositis like muscle weakness, DTV like swelling, Chronic Fatigue, weight loss, hair loss, vision changes, anxiety & depression. I thought I was either dying or I had completely lost my mind!

Gluten Free since May 17, 2008
Started feeling like a new person after only 3 days gluten free and it is 100% worth LIFE!
-Anna

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#2 marciab

 
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Posted 19 June 2008 - 03:35 PM

I used to fall asleep at the drop of a hat and sleep for days on end before eliminating gluten. And when I first went on this diet and was glutenned again, I noticed that I was doing it again. Not so much now, but I'm using DPP-IV nowadays if I think I've been glutenned.

It's funny, I get insomnia at bedtime and nocturnal myoclonus too if I get glutenned.

I would imagine that during those days I was sleeping days on end, I was on a shredded wheat kick. Two for one takes on a whole new meaning when gluten's involved. : )
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Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)
August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...
July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)
Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)
September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

#3 evansmommie

 
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Posted 23 July 2008 - 12:18 PM

I have narcolepsy and Celiac Disease. I've noticed that my fatigue gets a lot worse when I've been glutened. I've read several theories that narcolepsy and celiac are carried on the same gene and may somehow be related. In visiting narcolepsy message boards, I've read that many people with narcolepsy feel a lot better after going gluten-free. Not sure if they have been tested for celiac, but it seems a lot of people notice a difference on the diet, celiac or not. My narcolepsy has not gone away, but my fatigue has gotten better. I can fight being sleepy better than I could before going gluten-free. Is your husband on any type of medicine? If he is, he should know that when I checked last July, provigil contains gluten. I take ritalin because of that. I hope your husband is feeling better having a diagnosis! I think I took the news that I have narcolepsy harder than when I found out I have Celiac! Maybe he should get a blood test just to know for sure?

Angie
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Diagnosed with Celiac Disease July 11, 2005
Diagnosed with Narcolepsy July 3, 2007

I don't like the month of July very much!

Three year old son diagnosed with Celiac Disease March 2007. He's currently addicted to Kinnickinnick Vanilla Frosted donuts. :)

#4 Lisa16

 
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Posted 10 August 2008 - 03:35 PM

I don't know how useful this information is, but I think it is interesting. There is a gene-- the DQ7 gene-- that is found in about 2% of celiacs (European) and this gene is also called the narcolepsy gene. If you google it, you should find some hits.

I have the DQ7 and I have a lot of sleep problems.

Maybe you will find out he has that genotype.
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#5 April in KC

 
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Posted 11 August 2008 - 09:39 AM

Anna, I don't know if I have narcolepsy or not, but I have major "sleep attacks" when I get glutened. From childhood on, i have some mild to moderate differences in the way I handle sleep that have led me to question whether I have a form of narcolepsy. I used to experience sleep paralysis during twilight sleep...basically would be awake, about to fall asleep, and find myself et alert but unable to move. I can remember it happening at home, in the car, in the nurse's office at school, etc. In the few years before being diagnosed with Celiac, I was having a big problem with excessive sleepiness, particularly in the afternoon (? was it always after gluten meals?). Sometimes I just had to go to sleep for a while, and afternoon driving was difficult and not the safest thing, IMO.

After I went gluten free, I got a huge lift - felt like I had great energy all the time, no naps. But I started having "sleep attacks" a few weeks after going gluten free. I guess it was increased sensitivity. Now I have to be very careful, because one of my symptoms of being glutened is mild headache, then impossible to fight sleepiness. I can feel it coming on, can fight it a little bit if I slap my face, walk around, etc., but it's very difficult not to fall asleep. If I sit down I'm gone. It wears off between 1 hour and 3 hours later. I have had to pull my car over and find a place to park & sleep. The best thing is when I can just give in to it...and wake up several hours later feeling fine. (Then I get mild GI symptoms the next day.)

I get leg jerks / twitches when glutened, too. If it's RLS, it was cured when I went gluten free. I also have DH rash, brain fog, ataxia like symptoms, GI symptoms, etc. Pretty nasty stuff, but amazine that it's all okay when I'm gluten free. When tested, I did not have positive EMA or TTG, but I did have a high positive antigliadin IGA.
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#6 Candy

 
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Posted 20 September 2008 - 08:34 AM

I always thought I had Narcolepsy and it doesn't go away when I stop eating wheat. I'm always Xtra tired .I found that Caffeine does keep me awake ,so I don't spend most of the week sleeping.I'm going to take caffeine pills since the black tea makes me feel too dry and the green tea has only a third the caffeine as black tea ,so I'll take a caffeine pill when needed.I'll probably need only 100 mg a day if even that much so I'll cut a pill in half.They come in 200 mgs. I found a huge bottle for $10,but the fancy brands give you only 40 pills for $8.I don't feel sick when I consume caffeine ,so I seem to tolerate it well and it helps me stay awake. I was diagnosed with Sjogren's Syndrome recently and one of it's symptoms is major fatigue.
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I have DNA ancestry in NW.EUROPE,where CELIAC'S known to be common.

DEC. '05 TESTED POSITIVE for the Celiac GENES HLA-DQ2 , and DQ3 SUBTYPE DQ8
Celiac Negative Endoscopy-Aug.'08 - Diagnosed with Hernia and GERD(Gastric Esophageal Reflux Disease),and prescribed Acid Reducing Medication. I hadn't eaten WHEAT for a year prior to the Endoscopy-maybe that's why result was Negative. I need TTG test to determine Active Celiac Status/

Disgnosed with Sjogren's 9/19/2008- Internist referred me to Eye Doctor and Rheumatologist.

#7 Nancym

 
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Posted 20 September 2008 - 10:10 AM

After I got my enterolab gene test I googled my genetic results and found one of the genes Enterolab reported on was also somehow connected to narcolepsy. I don't have it though... thank god!
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#8 georgie

 
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Posted 20 September 2008 - 01:50 PM

This is interesting as when I get Glutened the first symptom is over whelming fatigue ...to the stage of falling asleep at the steering wheel. This happens within an hour or two of the Glutening but the fatigue happens within minutes .... I can be caught in traffic and suddenly find myself unable to stay awake. I had never thought of it as narcolepsy before but now I do - it could be described as that. I didn't know there was a gene test for it. I will check this out. Thanks!
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Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.
Diagnosed June 2006 with adrenal insufficiency.
Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.
Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.
Trialled Dairy Free Diet and reacted positively to that challenge in January 07.
News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !
Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

#9 mags

 
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Posted 20 September 2008 - 07:43 PM

I was actually diagnosed with narcolepsy in mid-2005. I started having other problems in the fall of 2005, and given my family history I went gluten free later in the year. I now sleep normal amounts and don't, say, fall asleep in my car at the post office.

Now, I don't think I actually had narcolepsy. The way it's diagnosed is by making you take this sleeping test, and if you fall asleep too fast or too often while they're monitoring you, then they say you have it. However, I never had cataplexy or anything like that (even thought that doesn't occur in all cases).

I will say, however, that getting in a normal routine is easier without gluten. I have more energy during the day to tire myself out the right way and thus sleep better at night. Plus, before I would only get the energy up to get any exercise late in the day, and in my opinion that doesn't allow your body to slow down for sleeping, so you get poor quality sleep. The trick is to be awake when you're awake and asleep when you're asleep, not in between for both.

So my point is, I guess, that gluten can affect you in ways that can make you markedly more tired, but it's not necessarily a direct cause and effect relationship.
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#10 caek_is_a_lie

 
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Posted 22 November 2008 - 06:54 PM

I have Narcolepsy and have to avoid gluten and a few other foods to feel well. If I eat properly, I don't have many symptoms, although I still have some daily fatigue and I have Cataplexy if I'm laughing at a funny movie or something. But for the most part I feel alert and can think and I don't fall down spontaneously. And I don't have to take a nap every day.

I am gluten-free, sugar free, and I have to avoid all grains, and a few particular fruits that paralyze me within 30 seconds if I eat them. I just found out it's the gluten sensitivity that's been causing my spontaneous cataplexy episodes for 10 years, and all that fatigue. My brother and niece have Celiac so I suspect I probably do too.

Whenever I brought up food allergies as triggers with my doctors they always ignored me or scoffed at the idea. I had to go to a Naturopath to get any real help. They know all about food!

Anyway, there are a few of us over at the Narcolepsy Network forum that have found our Narcolepsy is severely aggravated by gluten, so your husband is not alone. There are other things besides gluten that trigger Narcolepsy symptoms, like choline, so he may have to do an elimination diet to find all of his triggers.

Hope that helps!
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#11 caek_is_a_lie

 
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Posted 22 November 2008 - 07:01 PM

I didn't know there was a gene test for it. I will check this out. Thanks!


Genetics research in Narcolepsy is far from complete. They still don't really know what causes it and not everyone with Narcolepsy has the first gene they found. They've since found a couple more, but the research is still pretty new so I don't know if you could get tested for it yet.

However, the Celiac genes and the first Narcolepsy gene they found are pretty close together. I don't have that Narcolepsy gene but I'm curious if maybe many people with Narcolepsy have the Celiac genes. That would be really interesting!
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#12 april22

 
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Posted 29 November 2008 - 03:59 PM

I always thought I had Narcolepsy and it doesn't go away when I stop eating wheat. I'm always Xtra tired .I found that Caffeine does keep me awake ,so I don't spend most of the week sleeping.I'm going to take caffeine pills since the black tea makes me feel too dry and the green tea has only a third the caffeine as black tea ,so I'll take a caffeine pill when needed.I'll probably need only 100 mg a day if even that much so I'll cut a pill in half.They come in 200 mgs. I found a huge bottle for $10,but the fancy brands give you only 40 pills for $8.I don't feel sick when I consume caffeine ,so I seem to tolerate it well and it helps me stay awake. I was diagnosed with Sjogren's Syndrome recently and one of it's symptoms is major fatigue.


Hi Candy
I got a little worried when I read your post. I have narcolepsy and used to do just what you did. I binged on coffe and caffein for years. As Sjogren's is an autoimmune disorder - adrenal burn out - which huge amounts of caffein causes, is of concern.
I am sure you must have thought of getting tested for narcolepsy? I am not for drugs - but sometimes one type of drug might be less damaging than others - and some of the narcolepsy drugs are not stimulants. How is your nightsleep? and what do you do for a living.
Is wheat all you have cut out and what other things have you tried. Did your doctor test your vitamin D levels, Hb1Ac, Iodine and RBC magnesium? Have him do an adrenal test just so you don't make yourself worse in the long run. I did a number on myself and have worked years to try to repair the damage- not easy...
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#13 pelsteen

 
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Posted 13 November 2010 - 09:19 AM

Just recently we have come to discover that my husband has narcolepsy. His sleep problems have caused many problems both at home and at work, but we had previously just chalked it up to him being lazy or out of control of himself for no good reason (poor guy!) When I found out that I had celiac, Hubby joined in and went gluten free too. The narcolepsy went away within a week or so but returned a few days ago when Hubby gutened himself. It was this reaction that lead us to question his sleep behaviors and discover the underlying condition. Now we are wondering if Hubby is celiac too. Does anyone have any info on Narcolepsy and Gluten? I have read a few things that ties the sleep disorder to auto immune disease, specifically celiac, but this is only a "theory." Did anyone else have narcolepsy that went away after going gluten free? Thanks.
-Anna


I don't have any formal diagnoses, but horrible cramping and needing 18 hours in bed each day greatly diminished immensely after my last gluten on 8/17/10. My sleep needs, gradually increasing from 8 to 12 over 5 years, are now up to 14.5. My sleep is usually sound now for most of the night but I still usually have a bit of cramping and needing to use the bathroom sometime after 5 AM. At the same time, I have started to notice narcoleptic symptoms such as sleep attacks, sleep paralysis, and dreaming while I'm half-asleep. Thus my narcolepsy is getting worse.

I could easily believe that narcolepsy is an autoimmune disorder. I also have bad allergies and at age 53, I'm starting to notice some arthritis.
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#14 pelsteen

 
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Posted 11 December 2010 - 11:57 AM

I don't have any formal diagnoses, but horrible cramping and needing 18 hours in bed each day greatly diminished immensely after my last gluten on 8/17/10. My sleep needs, gradually increasing from 8 to 12 over 5 years, are now up to 14.5. My sleep is usually sound now for most of the night but I still usually have a bit of cramping and needing to use the bathroom sometime after 5 AM. At the same time, I have started to notice narcoleptic symptoms such as sleep attacks, sleep paralysis, and dreaming while I'm half-asleep. Thus my narcolepsy is getting worse.

I could easily believe that narcolepsy is an autoimmune disorder. I also have bad allergies and at age 53, I'm starting to notice some arthritis.


I have been to a sleep doc at Mayo who seemed to know all about Celiac. It seems that about half of people with narcolepsy have Celiac disease. Now, three months off gluten, I am sleeping quite well most nights, have seen no more sleep attacks, paralysis, or waking dreams. I now have tremendous energy and a clearer head than I've had in a decade! For me, gluten=POISON!
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#15 Looking for answers

 
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Posted 13 December 2010 - 01:51 PM

After I got my enterolab gene test I googled my genetic results and found one of the genes Enterolab reported on was also somehow connected to narcolepsy. I don't have it though... thank god!



Same with me, but I have two sets of the genes. I'm considered gluten "sensitive" not gluten intolerant by Enterolab.
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2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)
2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life
2009 Low T3 thyroid hormone, muscle twitching and adrenal fatigue
2006- Elevated Speckled ANA. GI suggested Celiac. Started gluten-free diet, but sloppily
2005 - Thought I had wheat "allergy." Stopped eating bread, oats problem too
College years - Still vegan -sickest point in life. Every classic celiac symptom
Teenage years - Stomach pain prompted veganism -> BIG mistake!
Child - Awful gas, D, C. Chronic infections, appendix and tonsils removed




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