Narcolepsy & Gluten

[FoxersArtist]

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

[marciab]

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. : )

[evansmommie]

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

[Lisa16]

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.

[April in KC]

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.

[Candy]

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.

[Nancym]

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!

[georgie]

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!

[mags]

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.

[caek-is-a-lie]

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!

[caek-is-a-lie]

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!

[april22]

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...

[pelsteen]

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.

[pelsteen]

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!

[Looking for answers]

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.

[Looking for answers]

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...

I was diagnosed with Sjogren Syndrome as well and battled fatigue too. I later found out that I am also intolerant to other foods and after eliminating them I am much better. I don't even need coffee anymore. I do still drink Green Tea because it's been proven to help protect the salivary glands of Sjogren Symdrome patients.

[AerinA]

I'm one of those people who hasn't been formally diagnosed either Celiacs or Narcoleptic... I had very "abnormal" sleep studies (very close to narcolepsy diagnosis but was five minutes too slow at falling asleep,) so my insurance won't cover any prescription medicines to help. My doctor doesn't think it's worth putting me through a biopsy for celiacs even though I have had vitamin D deficiency and wasn't absorbing medication. Does anyone know whether keeping on the gluten free diet will help my "not-quite-narcolepsy" if I do not have celiacs, or should I push for the biopsy to try to rule out gluten as a factor? Or just go gluten-free anyway? I'd appreciate any competent advice at this point.

Thanks!

[jennennyc]

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 haven't been diagnosed yet, but I'm just starting to try a gluten-free diet. I don't know for sure because I can't afford a sleep study, but I have cataplexy with stress or fatigue and can fall asleep just about anywhere (including stancing up on the train!). Also, my REM cycles are all messed up (I start dreaming before my head even hits the pillow and sometimes even during the day or while I'm driving!). I guess I haven't been gluten-free long enough to see if it helps, but my acupuncturist, who recommended I try it (because I kept coming up negative for everything my G.P. tests for) said that she's seen these symptoms in other gluten-intolerant/celiac people she's worked with, so I think it might be related. Obviously, I'm no expert, but I do think I'm in a similar situation, so it seems likely to me...

[tridoc927]

Susceptibility to celiac disease and narcolepsy share a common genotype. HLA DQB1 that are heterozygotes and have  *03:01 and *06:02 are susceptible to narcolepsy. If they have DQB1 *03:01 and *06:02 and DQA1*03 as well that all together is DQ8 one of the susceptible genotypes for Celiac Disease. So it's very likely that many of you have this combination. I do as well. My mom and several cousins have Celiac but I haven't had a positive antibody test. However, I lost a lot of bone mineral density same as my mom at menopause and couldn't absorb vitamin D until I went gluten free. After going gluten free I also had much less migraine. So I will remain gluten free regardless. Just last year found out I also have narcolepsy. My energy level on gluten was terrible, my fatigue most days 8 or 9 out of 10. Then off gluten it kept improving until 5/10 but still had to nap daily. Now with narcolepsy treatment I have more energy then I can remember since possibly high school! It's awesome. So it's not just a coincidence that many of you have narcolepsy issues.

 

[Anonymous]

Reading all of your posts makes soooo much sense now. I have had all of those symptoms too, unbelievable. My parents have had those symptoms too. My mom presented with celiac symptoms when I was just a teen and she recently died of cancer. I remember her talking about those symptoms and complaining about them. There is absolutely no doubt in my mind that these factors were all related to her death. My father also presents with the same symptoms. We must have the same genes and I am now an absolute believer that if this disease is not treated by the patient that it very likely can lead to much worse illness.

 

I am floored how involved the patient has to get in order to get this under control. I just found out I have it and I still get plenty of worrisome symptoms. I will completely have to stop eating large meals as much as possible and always carry around smaller meals. The symptoms tend to worsen if I eat large meals.

 

Also, having to watch ingredients in everything that I buy from now on in the supermarket will be tricky. I will now only choose fresh fruits and vegetables, nothing packaged anymore. Went on a website that listed all of the different terms of gluten that is not labeled as such on food packaging. That stuff is in everything we buy, everything.

 

Golly, this is going to take some work.

[Jmg]

Hello Anonymous, and if nobody has said as much yet, welcome

5 hours ago, Anonymous said:

I am floored how involved the patient has to get in order to get this under control. I just found out I have it and I still get plenty of worrisome symptoms.

Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come. 

If you've not already seen it there's advice and further info here: 

 

5 hours ago, Anonymous said:

Also, having to watch ingredients in everything that I buy from now on in the supermarket will be tricky.

It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others?

Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...