Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Old Hag Syndrome / Sleep Paralysis


nb-canada

Recommended Posts

Celiac Ninja Enthusiast

I've had this a few times, Chiropractor and I thought it might be related to my scoliosis. Vertebrae and or muscle cramp disrupting the neck or something.

 

Later I learned, it does happen on my back every time, it's part of the melatonin in the base of the brain over producing. Not sure why or how, could be food allergies. Since I've gone gluten-free I no longer have these sleep paralysis episodes.

 

It is very frightening. Couldn't breath or move, only thing I could move is the scm muscles in my neck, slowly turn my head right and left and got out of it. That's why I thought it was a muscle spasm in the base of my neck or a vertebrae out, once I started moving it I could get out of it.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

This is what Sleep Paralysis (Old Hag Syndrome) is:

 

https://en.wikipedia.org/wiki/Sleep_paralysis

 

Colleen

Waitingindreams Enthusiast

I've experienced this more times than I can count. It's always really scary! The worst part is that sometimes I will have dreams that I'm in water and I'll actually hold my breath in my sleep, and wake up gasping for air. That seems to happen a lot less often since I switched to a much healthier diet and started healing. (I was tested for sleep apnea, they said I don't have it)

 

The most recent episode happened this past Monday. I don't work Mondays, so I was home alone at my boyfriend's house while he was at work. I was watching a movie on his bed and I passed out - I was just feeling really tired. This was around 1-2PM. I was half awake (eyes half open, couldn't really move) and was lying on my side facing the doorway to his room. To my knowledge, everything looked as it should - it was daylight, his room looked the same, was just partially awake. Suddenly, my bf barged in to the room like he usually does and walked right over to me. I thought it was weird, because he told me he wasn't coming home for lunch. First he walked past me to check the air conditioner, then he came over to me to wake me up. He put his fingers on my neck to check my pulse, because he could tell I was in that half awake state. He asked me if I was okay and tried to wake me up. I didn't believe it was really him, so I was struggling to wake up. I tried to kick/slap him with my arms to see if I hit solid leg to prove that it was really him and I wasn't dreaming. I *hit* solid leg, or so I thought. When I eventually fully woke up, I realized that I was alone and that he never came home to check on me. I texted him to double check (it was so real) and he confirmed he had not come home. I do count this as sleep paralysis, because I was partially awake, not fully asleep, and I was really trying to wake myself up. Even though it could have been much more terrifying, it was really disturbing...it was so realistic but yet I still knew it wasn't him and tried to prove it, and somehow my brain tricked me into thinking I hit solid leg and that he -was- really there. So freaky. 

  • 4 years later...
Ginniee Newbie
On 3/13/2012 at 10:03 PM, nb-canada said:

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

Yes I have! But mind last for 2-3 hours til I can fully move. But 100 mg of benedryl works wonders. My theory is that gluten causes CNS swelling somehow due to a rush of mast cells releasing huge amounts of histamine... and the result is the paralysis.  I am determined to figure out how the neural pathway is affected! 

 

Ginniee Newbie
On 5/24/2014 at 12:45 AM, across said:

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.

Yes! My full paralysis only happens on my back and if I sleep on my side it only happens to half my body- the side I am sleeping on.  It will take me 2-3 hours to come “out if it”. But I take 3-4 Benadryl pills (or liquid) and boom! It’s liike it relieves the CNS inflammation somewhere and speeds up my ability to move to like 1/2 hour.  Still tryin to figure out why it helps me- the neural pathway.... 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748

    JodyBledsoe
    Newest Member
    JodyBledsoe
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.