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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,875
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.