Any of My Fellow Celiacs Deal with Sleep Disorders?

is RBD connected to celiac disease?

Scenario 1: It’s overtime and I’m taking the faceoff in a playoff hockey game in front of a full crowd. I win the draw and there is nobody in front of me as I rush to the net, but I push the puck too far in front of me. I need to beat the goalie to the puck.

Scenario 2: I’m running through the dark streets as fast as I can. There is someone bad chasing me and I just can’t lose him. As he is about to catch me, I turn around and swing wildly at him.

Scenario 3: Now I’m in the NFL. Eli Manning is the quarterback. I do a cross route in the endzone. Eli throws me the pass but it’s a bit high, so I throw my arms up to catch it.

Scenario 4: I’m in a house with friends and family. Nobody will listen to what I have to say. I’m beyond frustrated so I stand up, shake my fists and scream in anger.

Now if this was all in real life, I’d say I’d lead a pretty exciting life. But alas, these are the type of dreams I’ve been constantly having lately. They almost always involve either sports, danger or strong emotions.

“Ummm…why is Gluten Dude telling us about his dreams??”

Because I’ve been diagnosed with REM Sleep Behavior Disorder (RBD) and am wondering if anybody else with celiac disease deals with this or any other type of sleep disorders. Back in 2012, I wrote a post titled Celiac and the Link to Other Diseases, where I laid out my sordid health history to see if there was a common thread between what I’ve gone thru and what other celiacs had gone through. There was. So I’m thinking maybe there is a common link here as well.

So what is RBD?

I’ll let the National Sleep Foundation explain it:

What we call “sleep” involves transitions between three different states: wakefulness, rapid eye movement (REM) sleep, which is associated with dreaming, and non rapid eye movement (N-REM) sleep. There are a variety of characteristics that define each state, but to understand REM sleep behavior disorder it is important to know that it occurs during REM sleep.

During this state, the electrical activity of the brain, as recorded by an electroencephalogram, looks similar to the electrical activity that occurs during waking. Although neurons in the brain during REM sleep are functioning much as they do during waking, REM sleep is also characterized by temporary muscle paralysis.

So for most people, dreaming is purely a “mental” activity: dreams occur in the mind while the body is at rest. But people who suffer from REM sleep behavior disorder (RBD) act out their dreams. They physically move limbs or even get up and engage in activities associated with waking. Some engage in sleep talking, shouting, screaming, hittting or punching. Some even fly out of bed while sleeping!

RBD is usually noticed when it causes danger to the sleeping person, their bed partner, or others they encounter. Sometimes ill effects such as injury to self or bed partner sustained while asleep trigger a diagnosis of RBD.

rem behavior disorder celiacYeah…good time. Want even more fun news? A 2014 study showed that bbout half of people who have RBD will develop Parkinson’s disease or a related neurological disorder within a decade of being diagnosed with RBD. And eventually, nearly everyone with RBD will ultimately develop a one. Yay me!!

At first, I thought it was pretty annoying, somewhat humorous and a little odd but nothing to be concerned about. But when it started happening on a regular basis, I said “Hmmm…maybe I should look into this a bit?” It was RBD to a tee. I went to a sleep disorder specialist, who was amazing and spent over an hour with me, but didn’t offer much hope.

Is there a cure? No. Is there a treatment? High doses of melatonin are supposed to work. Been on it for about 2 months now. Hit or miss it seems.

And how does Mrs. Dude feel about all of this? Long-term? Obviously concerned. Short-term? A bit hesitant to sleep next to me.

So my fellow celiacs, any of you deal with RBD or other kinds of sleep disorders? Do tell.

As for the scenarios above:

  • Scenario 1: As I sprawled out to beat the goalie to the puck, I actually jumped out of my bed onto the floor and ran into the wall.
  • Scenario 2: As I went to grab the guy who was chasing me, I actually grabbed Mrs. Dude and scared the ever living hell out of her.
  • Scenario 3: As I threw my hands up to catch the ball (c’mon ELI!), I actually slammed them into our headboard.
  • Scenario 4: As I tried to get anybody to listen to me, I actually sat up in bed screaming and cursing.

ANYBODY WANNA SLEEP OVER TONIGHT??

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30 thoughts on “Any of My Fellow Celiacs Deal with Sleep Disorders?”

  1. Yes. I get this. Won’t get into the specifics but they aren’t pleasant dreams and neither are the outcomes for me or my partner. It is very bad when i have been glutened. And exacerbated by the menopause too.

  2. Colette Sullivan-Ledoux

    I don’t think there’s a Hallmark card available to tackle this one Gluten Dude. I can only hope you keep your chin and your dukes up during waking hours, and fight on to do what’s necessary to be as healthy as possible. We’ll all stay hopeful that the story ends on a wonderfully positive note!

      1. Nice 😂 I’d buy that card.
        Me and my 8 yr old have this sleep disorder. He yells at people and jerks around most nights while I have lucid dreams and try to kick my husband’s @$$ on bad nights. Both of my kids and I have celiac disease and my husband at least has a gluten sensitivity. My other child is 3 and he has IBS (sensitive to everything…nightshades/high lectin foods/cruciferous veg/eggs/most grains/dairy/preservatives). We’ve been gluten free since my 8 yr old was 3 and he still isn’t fully back to normal. We’re all on the Paleo AIP diet for awhile to heal our bodies. Fun times. I’m looking forward to figuring out what to make AIP style for holiday foods!

  3. I’m very sorry. That truly sucks. I don’t have advice or BTDT info to give you. But I do know that melatonin can interfere with thyroid hormone levels and lower them, so please be sure to get a full thyroid panel every so often.

    I have hypothyroidism, so I’m on meds. I was taking melatonin for a year and when I weaned myself off I became hyperthyroid. I had to lower my thyroid meds. (They had been quite high.) It took some research on my part to figure out what was going on. The light bulb went off when a doc showed me my thyroid levels, and I realized the change happened gradually and started when I was gradually reducing the melatonin. I confirmed my theory with another doctor. (But that’s another story… Let’s just say that you shouldn’t accuse a small person of not eating when they have a celiac diagnosis, a severe number of food intolerances, and difficulty keeping weight on.)

    1. Thanks for this info. I’ll have to be aware should I decide to stop taking melatonin. I use 3mg time released, it seems to help. I’m 92 lbs, don’t know if weight has anything to do with dosage, but it works for me. My issue mainly falling asleep and staying asleep.

  4. Wow, that is intense! So sorry you & Mrs. Dude are going through this! My experience: for several years before CD diagnosis at age 59, I noticed that I quit having dreams. I always had vivid but normal dreams throughout my lifetime until my body began to shut down because of undiagnosed celiac disease. After responding pretty successfully to a strict GF diet for 2 years, I started to dream normally again. I have been GF for 2 1/2 years now and sleep well with normal dreams. Hoping the very best for you! I would NOT have been able to recover as much as I have without your help & the help of your faithful followers & supporters!

  5. I never had night Terrors but I always had problems sleeping.. then delevoped horrible full blown insomnia for 12 years while trying to raise triplets. The only time I would sleep well was on vacation because I was getting the viamins thru my skin. After I was diagnosed and ate gf it took awhile but slowly my sleep returned to normal. I have to say I feel as those I lost 12 years of my life. It was the absolute worst Celiac symptom. It is not a common one, but it is definitely noted as one. Good luck with your sleep😃

  6. Poor Mrs. Dude. I banished my husband to a different bedroom for sleep because he snores. She needs her sleep too…Good luck GD. Hope you can find whatever is triggering those episodes.

  7. I have some messed up dreams but I can say I have never actually gotten out of bed or grabbed anyone during them. I have been diagnosed with upper airway resistance syndrome but not sure if there is a link to Celiacs!

  8. Yep, sleep disorder. I take 14 things to be able to sleep. I don’t know if is related to my celiac diagnosis, I have myalgic encephalomyelitis and adrenal issues which I think causes my sleep issues.

  9. I can’t sleep without melatonin and need to take several that are time released! I dream that I am falling and kick my leg.. right before I hit the sidewalk. Pretty consistent dream. Creepy.

  10. Jeesh! Sorry to hear about this new chapter for you and Mrs. Dude. Can’t say I have sleep problems but I have sooo many other health issues aside form Celiac. None of the doctors I’ve been to are willing to connect the dots. I used to think all was related to Celiac but since that has been controlled for 8 years, perhaps there’s a deeper root cause. A root cause that triggered Celiac and is also keeping me from being free of these other issues. It’s frustrating to be our own detectives and advocates but we can’t give up. My thoughts are with you and thank you for all of your hard work on our behalf.

  11. I have Restless Legs Syndrome, Type 1, severe. It has plagued me my entire 56 years. I tried melatonin, which did not work, and stumbled upon quinine which helped a little. In my forties, I finally found a neurologist who knew what RLS is and got on medication meant for Epilepsy and Parkinson’s Disease. Finally, a full nights rest. I swear, as big a pain Celiac is, the RLS is the dominant disease in my life. Without the medication it’s like trying to sleep with someone dragging a stiff hair brush or something similar up and down the sole of my foot, except that feeling is inside my legs. I can honestly say that without my prescription my quality of life would be in the toilet. RLS suks big time.

  12. There’s been mention a lot recently about brain function in a number of autoimmune and celiac health summits I’ve seen lately. I have not closely followed that part myself, but there’s been some amazing breakthroughs in reversing auto immune related brain problems via natural and Functional medicine methods.

    A summit is currently replaying (for free) and it starts tonite. Search for “auto immune secrets” to find the link (I can’t get my post to publish when I include the link).

    In the past version they covered brain health in a bit more detail in episode 3. This is an updated version, so it may have changed.

    For people with celiac and other related autoimmune problems, this and a number of other summits have some really ground breaking and amazing information to really deal well with reversing and drastically helping many of these. So many of the fixes are completely doable, and not overly expensive, and a ton of them are food related.

    Get on the mailing list of some of the presenters of this summit, and you’ll get access to other autoimmune summits, as they become available. There’s been at least one summit released each month for the past year. They are all free to watch during the launch time. There have been a couple specifically on the brain and related problems, and they were quite popular, so they will air again, or others with many of the same speakers.

    I’m not a spokesman or anything like that for this summit, I’ve simply found these different summits invaluable in spreading cutting edge info that you’ll rarely see anywhere else, and that almost no doctor will know about at all.

  13. I have Celiac, Hashimoto’s thyroid and insomnia.
    My functional medicine doctor has me take L-Theanine, Phos Serine and Ashwaganda a few hours before bed to allow sleep. GABA is helpful, too. Melatonin does not help, but magnesium does, for me. P.S. Magnesium is also key for treating my mitral valve prolapse and insomnia, and helps with muscle cramps…Tri-Salts drinkable powder or Kabana magnesium cream. For menopausal women, BHRT helps address insomnia.

  14. Wow! I’ve never heard of this. It sounds awful. I’ve not experienced anything like that before but I do have sleep apnea. I don’t think my sleep apnea is related to celiac disease though. My doctor said that I have a small throat and my tongue is enlarged.

    I hope you are able to start sleeping better soon!

  15. I kind of doubt your newest heath issue is connected to celiac disease. I’m real sorry to hear you are having troubles yet again. ((Hugs)) It seems to me you’ve had more than your fair share. My sister-in-law was diagnosed with Parkinson’s almost a year ago. She’s also had a couple of strokes. The one thing she doesn’t have is celiac disease or any issues with gluten or any other food sensitivities. Here’s a link to an interesting article I found on the rem disorder you’re experiencing.
    https://healthblog.uofmhealth.org/brain-health/rem-sleep-behavior-disorder-parkinsons-disease-can-be-a-nightmare

  16. Sleep disturbances/troubles? You bet. RBD? Wouldn’t know because I have neither had a sleep study nor are my sleep partners talking (me, myself, and I). RLS? Without a doubt. Sometimes the crawling feeling, sometimes sharp stabbing/biting pain, but always with major kicking.

    So GD, from most of your writings I would venture to guess you are much like me in desiring to find natural cures (those that don’t involve poisoning the body while making big pharma richer). To that end I will simply lay out what has worked for me, repeatedly, every time.

    General sleep disturbances/insomnia: Let me say up front, “I don’t give a rats patootty if this actually works because “hey! science!” or if it works by placebo effect (also known as the mind can do amazing things).” What is it? An earthing mat. No, I don’t use it religiously. Yes, when I can’t turn off and go to sleep I pull out the earthing mat and am literally asleep withing minutes, not to awaken till the alarm goes off. Are they inexpensive? Not really. Are they totally outrageous in cost? Not really. But what I can tell you is this: it works for me (and apparently a lot of others), I have wasted far more money in my lifetime purchasing lottery tickets when the pot grows big (to no avail), and it has given me a solution that required no testing, pharmaceuticals, nor doctor visits. Heck, you might even have tip jar money to wager as an experiment 🙂

    RLS: Stretching. I know, sounds way to simple. But I have found this to be repeatable as well. How well does it work? There have been nights where the RLS is bad. I have learned to get up and do 5-10 minutes of very specific, low intensity, stretching. I then go back to bed and sleep through the remainder of the night with no kicking. My assumption is pinched nerves (or tight muscles restricting blood flow to nerves) that once loosened will stop the RLS kicks. Can I point anybody to research or a page that shows the stretching? Nope, cause I figured this out quite by accident/experimentation. If I see interest here in replies I would be more than happy to share the stretches that work (warning, will take much pontification to explain without illustrations).

    That’s my two cents. Take it. Leave it. Try it, or don’t.

    Keep fighting my celiac family! Keep what works (for you) and throw out what doesn’t.

  17. I have sleep apnea, not sure if this is what you were looking for. However, after I cut out gluten, I discovered I felt better in the mornings, even moreso than when I started using a CPAP. For the record, if any of you snore, or have a SO who snores, consider doing a sleep study to rule out sleep apnea.

  18. I came across you while searching to find a connection between celiac disease and RBD. I have both, among many other autoimmune and endocrine disorders. Due to cerebellar and brainstem degeneration, I have been referred to a neurologist who subspecializes in movement disorders. I am hoping the RBD is related to celiac ataxia, and is not full-blown multiple system atrophy or Parkinson’s. Sounds like you’re wondering the same…

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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