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

Night Terrors


Jen-1984

Recommended Posts

Jen-1984 Apprentice

Does anyone experience this along with being celiac? I have very vivid dreams, I don't think I am breathing that great during sleep, but I did a sleep study not long ago and the doctor said I had mild sleep apnea and that he wasn't going to treat it. My dreams like I said are very vivid and I wake up shaking, and feeling scared. I also notice at night I get bad stomach cramping. Can anyone relate?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Oh yes! I have a sleep disorder, too, and used to have very vivid dreams while I was still eating gluten. Not so much any more. Except for when they put me in an induced coma, and I think then my brain was crying out for stimulation so it created its own :lol: It took my husband weeks to convince me that some of those things just did NOT happen!! They were so real and some of them pretty scary....

Plus, the gluten always gave me extreme bloating, cramping and belching at night, with racing heart.

Jen-1984 Apprentice

Thanks for your reply, it makes me feel so much better having others to talk to and relate with here. I hate the way my sleep has been effected. Six years ago at the onset of my symptoms, I couldnt sleep no matter how hard I tried. I went two days without sleep. My symptoms have not only been gastro related but so many neuroligical symptoms. Like tingling, burning in hands and feet, vision problems, seizure like issues, feeling clumsy. Anyways, I cant believe how celuac can effect people, if that is what I have and I highly suspect it, because I have been tested for everything under the sun and the only positive result was the dgp igg. Anyways, enough of my rambling.

ButterflyChaser Enthusiast

My ex was celiac and had the worst sleeping disorder I have ever seen. I now think he had night terrors, but he seemed to have never given that a thought, even if he described that "nightmare" weight on his chest. He screamed and sometimes even hit me when that happened. I would retreat to the farthest corner of the bed and mostly spend the nights awake because I feared that I would move if I fell asleep, and then he would jump at me because it was fault he had woken up in terror. It scared the hell out of me.

That said, that guy had other serious issues that might have caused his nightmares; regardless of his medical condition, he was not a good person. Glad it's over.

Dugudugu Rookie

I would suggest to try to sleep with a cpap machine after all. Your AHI might be low, but with these complains, if you were my patient, I'd sure give it a try with a cpap device. Maybe you can rent a machine instead of buying? Sleep apnea = sleep apnea. Mild or severe, sleep is disturbed too much times than is good for you.

mushroom Proficient

I should probably add that I now sleep with supplemental oxygen since neither CPAP nor BiPAP worked for me since I also have COPD and could not breathe out against the pressure of the machines and my blood gases ended up all out of whack.

GottaSki Mentor

I slept walked my entire childhood -- or so I'm told.

Son, Daughter and Grandson all have horrible - wake up screaming terrors (thankfully they don't remember it the next day).

Scary stuff.


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



Celiac.com Sponsor (A8-M):



Jen-1984 Apprentice

I think at this point a CPAP machine would probably help me. I wish my doctor wasn't such a hard guy to convince of things. And regarding the sleep walk thing, I did that all the time as a kid and had very disturbed sleep patterns along with screaming in my sleep. I would not remember any of it. My parents would just tell me about it the next day and act pretty freaked out. Hahaha.

Jen-1984 Apprentice

One other thing I thought I would mention is that there are times when I feel also very dizzy right when I wake up and actually if I wake up too abruptly and get up, like to check on an upset child I pass out, and have done this a couple of times. It doesn't happen often but has happened a couple of times.

anonymous-123 Rookie

i decided to this detox/cleanse that i thought would help to clean out my gut of gluten and instead it made me worse even though it said gluten free on the box. anyway, the four days i was using the product i was having intense nightmares. i stopped using the product 2 days ago. so i'm assuming gluten or anything else your tummy doesn't like could give you nightmares.

mushroom Proficient

Oh yes. The vagal nerve is the connection between the gut and the brain. Pressure on the vagus nerve can cause you to faint, as from bloating -- been there, done that, numerous times.

anonymous-123 Rookie

Oh yes. The vagal nerve is the connection between the gut and the brain. Pressure on the vagus nerve can cause you to faint, as from bloating -- been there, done that, numerous times.

extemely interesting...i had never known this before. this explains why i probably always feel faint! especially after that darn detox thing i tried. i actually left work early today b/c i told my boss i felt faint. everything i am reading on this forum is really helpful! it's all making sense now.

Dugudugu Rookie

@mushroom. Have your bpap settings been correct? Depending which brand the flowgenerator is, the service provider can adjust the settings to a longer exhalation time, and of course, a lower pressure. As you'll probably know copd-ers need more time to exhalate. The Resmed units allow a pretty long exhalation time. Good thing though the O2 works for you.

mushroom Proficient

@mushroom. Have your bpap settings been correct? Depending which brand the flowgenerator is, the service provider can adjust the settings to a longer exhalation time, and of course, a lower pressure. As you'll probably know copd-ers need more time to exhalate. The Resmed units allow a pretty long exhalation time. Good thing though the O2 works for you.

They had to put the settings to 23/18 in order to accomplish saturation to their satisfaction during my sleep study. The day following I vomited and had diarrhea most of the day - haven't been that sick in a long time, even with gluten. So I was definitely not interested in pursuing that avenue of unwellbeing. They took my blood gases before the study, but they should have taken them after the study. :ph34r:

shadowicewolf Proficient

What about those falling type dreams? Would those count? Holy cow, between those and waking up and not being able to move (sleep paralisis?) its a wonder i got any sleep. I don't get the sleep paralisis ones anymore (yay!), i still, on a very rare occasion get the falling ones. I would wake up from one feeling like my heart was about to leap out of my chest. Not to mention the falling jitters... eeek....

anonymous-123 Rookie

What about those falling type dreams? Would those count? Holy cow, between those and waking up and not being able to move (sleep paralisis?) its a wonder i got any sleep. I don't get the sleep paralisis ones anymore (yay!), i still, on a very rare occasion get the falling ones. I would wake up from one feeling like my heart was about to leap out of my chest. Not to mention the falling jitters... eeek....

the sleep paralisis dreams are scary! i get those and i hate them...they freak me out!

lil'chefy Apprentice

One other thing I thought I would mention is that there are times when I feel also very dizzy right when I wake up and actually if I wake up too abruptly and get up, like to check on an upset child I pass out, and have done this a couple of times. It doesn't happen often but has happened a couple of times.

Wow, this happens to me to! Do you think it is celiac related? Or a hypothyroid issue? What is your blood pressure like?
Marilyn R Community Regular

I don't know if this will help you or not, but some people with mild sleep apnea benefit from sleeping in an XL tee shirt with 3 tennis balls sewn down the back. You stick a ball in an athletic sock, stich it up, and repeat twice (at intervals) , then sew the sock onto the back of a tee shirt. I'm not even close to being Betty Crocker, but I made one of those. (Hand stitched.)

I looked for a link and found this U Tube thing.

It's a sales pitch but it explains the reason, and gives you something to go on.

Dr's used to recommend sewing them vertically, it looks like this guy prefers horizontal, and coozie cups or cut up noodles vs. tennis balls.

The tennis balls are to prevent you from sleeping on your back so that your airways aren't as restricted by your uvula. (I probably didn't spell that correctly.) Anyway, that might be worth a try before you have to pay out of pocket for a CPAP or oxygen. If you qualified for insurance, I'm pretty sure your doctor would have ordered it. That doesn't mean that you don't have a sleep problem, just that insurance probably won't cover it.

Let us know if you give it a whirl how it turns out!

GottaSki Mentor

I don't know if this will help you or not, but some people with mild sleep apnea benefit from sleeping in an XL tee shirt with 3 tennis balls sewn down the back. You stick a ball in an athletic sock, stich it up, and repeat twice (at intervals) , then sew the sock onto the back of a tee shirt. I'm not even close to being Betty Crocker, but I made one of those. (Hand stitched.)

I looked for a link and found this U Tube thing.

It's a sales pitch but it explains the reason, and gives you something to go on.

Dr's used to recommend sewing them vertically, it looks like this guy prefers horizontal, and coozie cups or cut up noodles vs. tennis balls.

The tennis balls are to prevent you from sleeping on your back so that your airways aren't as restricted by your uvula. (I probably didn't spell that correctly.) Anyway, that might be worth a try before you have to pay out of pocket for a CPAP or oxygen. If you qualified for insurance, I'm pretty sure your doctor would have ordered it. That doesn't mean that you don't have a sleep problem, just that insurance probably won't cover it.

Let us know if you give it a whirl how it turns out!

This is a fantastic idea!

Marilyn R Community Regular

I think using it a couple of weeks are enough to train youself to sleep on your side.

The other thing I thought of is getting a copy of your sleep study analysis.

If you live in the US, you qualify for oxygen if you spend 30 minutes or more under 88% oxygen saturation. Most insurance companies honor that. It would be good to know how many desaturation events you had, and how long the study was for.

Sometimes doctors miss things.

Dugudugu Rookie

They had to put the settings to 23/18 in order to accomplish saturation to their satisfaction during my sleep study. The day following I vomited and had diarrhea most of the day - haven't been that sick in a long time, even with gluten. So I was definitely not interested in pursuing that avenue of unwellbeing. They took my blood gases before the study, but they should have taken them after the study. :ph34r:

The pressures are HUGE! Bloodgasses are needed before therapy, and yes, also after a night's sleep. I only have a few clients with pressures like these. Its tough for them to be compliant. Again, I am happy for you the oxygen-solution will do.

Archived

This topic is now archived and is closed to further replies.

  • 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. - Scott Adams replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

    2. - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

    3. - trents replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

    4. - Scott Adams commented on Scott Adams's article in Origins of Celiac Disease
      7

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    5. - Thoughtidjoin posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

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

    • Total Members
      133,432
    • Most Online (within 30 mins)
      7,748

    ainsleydale1700
    Newest Member
    ainsleydale1700
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in during harvesting, storage, or packaging. Rinsing and sorting can reduce surface flour and remove visible stray grains, and many people do this successfully, but it does not guarantee that all gluten contamination is eliminated. Some limited testing has shown that naturally gluten-free grains and legumes can contain measurable gluten when cross-contact occurs in shared facilities, which is why manufacturers use precautionary labeling. The seriousness depends on the individual: for someone with celiac disease, even small amounts of gluten can trigger intestinal damage, so choosing certified gluten-free legumes is the safest option. Manufacturers are not necessarily being overly cautious; they are often acknowledging real cross-contact risk in complex agricultural supply chains.
    • knitty kitty
      Welcome,  While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat.  Farm equipment and transport trucks are used to harvest different crops.  It would be really expensive to have separate trucks and packaging lines for each crop.   I have found sorting or picking through the peas or lentils along with a good rinse sufficient to make them safe for me.  Do remember that lentils and such are high in carbohydrates.  Eating a diet high in carbs can lower thiamine B1.  Good sources of Thiamine and other B vitamins are meats.  Extra thiamine is needed for tissue repair to grow the villi back and recovery from malabsorption.  Low thiamine symptoms (gastric Beriberi) are very similar to symptoms of a glutening.  Try adding thiamine hydrochloride or Benfotiamine and see if you still react to chickpeas and lentils the same way. Supplementing with extra thiamine is safe and nontoxic.   Best wishes.
    • trents
      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it was a study done by Gluten Free Watchdog I'm thinking of but they did an actual count of the seeds in a purchased mainline food company bag of lintels and found something like 20% of the content was wheat seeds. So, you'd better do some sorting first.
    • Thoughtidjoin
      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
×
×
  • 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.