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Old Hag Syndrome / Sleep Paralysis
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Someone just reminded me of something that used to happen to me before going gluten-free. It would be interesting to find out if other Celiacs have experienced this. My son who is also Celiac has also experienced it. I used to get episodes of what is called "Old Hag Syndrome". I am attaching a link that explains it. It is also called "Seep Paralysis". I just had the thought that maybe it was caused by Celiac because it has not happened to me since. It is a very scary situation where you wake up and cannot move a muscle - you hear and see and smell but cannot move. It feels like something or someone is holding you down and you try to yell out but can't. It only lasts a few seconds but it is very scary. Has anyone else experienced this syndrome?

Old Hag Syndrome

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All though interesting, very interesting, I don't see a connection to Celiac Disease. :)

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Yes, I've been plagued with "sleep paralysis" for all of my life, but--come to think of it--it got much worse when my celiac worsened 15 years ago....and, by golly, I hadn't noticed that it hasn't happened since I've gone gluten free. Imagine that! I wonder if it's yet another neurological problem caused by celiac. You bring up an interesting point.

This odd state of sleep so interested me, I actually wrote a novel based on it...and a possible reason for it (no, not supernatural). I'll be putting the finishing touches on my novel later this month. It's a good thing I didn't think there was a connection to celiac--that would have been a very boring novel!

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I had this happen to me a couple of mornings in a row, long before I became aware of celiac. It is a totally scary experience. I was alone in the house at the time, my mom was in hospital dying of cancer, and I have never talked to anyone about it. It has never happened again. I put it down to a combination of meds I was taking, and stopped taking the recently added one... :unsure:

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I used to have that all the time. It got so bad at one point that I was afraid to go to sleep and would stay up all night. I attributed it going away to my research on the subject and trying to turn it into lucid dreams. I didn't fight it like I had been doing. It is an interesting phenomenon.

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I had that a lot as a child and young adult. Not recently that I know of. Gluten is not an issue for me.

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Have any of you who have experienced more than one episode of sleep paralysis ever had a polysomnogram and Multiple Sleep Latency Test (MSLT)? I have celiac and narcolepsy and often experience sleep paralysis, which can be a symptom of narcolepsy.

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Interesting. I used to get Old Hag, also, usually when taking afternoon naps, but not so much anymore. Not sure if it was gluten-related, though.

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I have this sometimes, combined with poor sleep for pretty much my whole life. I had this last night in fact, and it lasted for about 10-30 seconds.

I am sensitive to both gluten and milk and have just started a diet, but haven't seen any change to this yet (sleep quality seems a bit better though -- I dream more the last week than I usually do in a month).

I have been speculating this could be related to gluten and/or casein sensitivity in some way as narcolepsy is associated with autoimmune reactions to the orexin system (critical component in the regulation of sleep, wakefulness and REM). Haven't seen any research investigating this though.

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yes! this has happened to me many times, it took a lot of explaining to my husband (who thought i was possessed). it is very scary but after knowing what it is it's not so bad, you can almost 'train' yourself not to freak out.

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i searched and found this thread- because i had this paralysis THIS MORNING!!!!! i believe it could be gluten related-> as SOME Celiacs get Narcolepsy & Apnea-> so i ASSUME that Sleep Paralysis and other sleep disorders could be caused by gluten.

im a little nervous tho- because i only had these episodes about 5 times maybe- on and off from Mid 90s to around 2005... all pre Celiac DX and pre-gluten free. so WHY this morning???? i know its *possible* that im getting too much through <20ppm gluten free junk food or cross contamination... BUT enough to bring on symptoms that i havent felt in YEARS????

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this also happens to people without celiac disease, it is a not so common sleep disorder.

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I never knew there was a name for this! I've experienced this several times in the past and I remember telling my step-dad what happened and he called me crazy. :lol: Thankfully, I haven't experienced anything like this since I went gluten-free a year ago.

Personally don't think there is a connection to Coeliac disease but it is interesting.

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I had this happen as a child and totally forgot about until it happened once about a month ago. Sure hope it doesn't happen again, very disturbing.

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I'm currently 21, and during the ages of 13-16, this syndrome plagued me. I just found out about my gluten sensitivity/ possible celiac about 1 month ago. I suspect Ice had it for several years, by looking back at all of my symptoms. I don't know how they'd be connected, but I know eating gluten can cause neurological symptoms. Sleep paralysis is easily the most terrifying think that's ever happened to me- I'm sorry for anyone that has to go through that.

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Omg! The same thing happened to me since I was around twelve. My doctor thought it may be linked to my bladder condition, interstitial cystitis (which was caused by my food sensitivities i was unaware of). According to my doctor, it is more common with those who have insomnia, wake excessively or fail to go through normal stages of sleep. I woke sometimes sixteen times a night to go to the bathroom. It's kinda a chicken and egg kinda thing for me, idk which came first but they are definitely related.

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I'm pretty sure this has happened to me, but I wake so slowly that it's never frightened me, as I don't wake and immediately try to move. I have never had it happen on a day where an alarm is waking me, so not sure really.

I'm pretty sure it's related to the hormones that regulate sleep. The body releases mild paralytic hormones that are designed to keep you from sleepwalking, it's theorized that a deficiency in these contributes to somnambulism. Too much and you get temporary waking paralysis.

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wow I forgot about this ..This happened to me at my peek of symptoms of gluten ataxia.. It never happened in my life before that though, but once the ataxia got to the point of wobbly knees and difficulty. reading and writing, I kept having these and I remember trying to explain it, was frightening!! ...it does sound like a sepearate sleep disorder ..but I believe ceiliacs causes all sorts of seperate conditions ..so personally I havn't had one since going Gluten-Free...to me feels like it was related.

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I have suffered from sleep paralysis. I don't know if it's connected to celiac. I've only been gluten-free for two months now, but I have not experience sleep paralysis in those two months. However it only happened to me once or twice a year.

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This happened to me sometimes but has not happened since going gluten free.

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I have had sleep paralysis since I was 5. and it happend at least once a month. I would get so scared that I would stay up at night which would make it more likley to happen but when I went Gluten-Free it didn't really happen. I think there might be a connection.

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  :blink: I had an incident last night.

 

First time in years. Ugh, shivers as i think about it. I was like "is this what i think it is?". :unsure:

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Sorry Shadow :(

 

Hope you have a restful night tonight - scary stuff.

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I've never had this happen to me until my recent hospital visits related to celiac disease. It is now a recurring thing despite being gluten-free for nearly two weeks. It's very scary and I'm finding that I'm totally sleep disturbed since this has all been going on. I've been awake the majority of nights for days on end after gluten attacks. I feel like I'm in a nightmare sequence. I'm awake with panic and shortness of breath truly afraid that if I fall asleep that I will die. When I finally start to dose, the paralysis sets in while I'm still awake. it's very scary.

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Yes, I have had this happen a number of times in my life. It is terrifying!

 

I didn't read the link you posted, but one thing I have read in the past (and that has helped me avoid this) is that it occurs more frequently when you sleep on your back. I have no idea why this is the case, but changing your sleep position might help. I'm not a back sleeper usually, but every time it has happened to me that I can recall, I was sleeping on my back at the time.

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    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
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