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

By Jen-1984
in Related Issues & Disorders

Recommended Posts

Jen-1984 Apprentice
Jen-1984
Posted

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
mushroom
Posted

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
Jen-1984
Posted
  • Author

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
ButterflyChaser
Posted

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
Dugudugu
Posted

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
mushroom
Posted

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
GottaSki
Posted

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
Jen-1984
Posted
  • Author

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
Jen-1984
Posted
  • Author

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
anonymous-123
Posted

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
mushroom
Posted

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
anonymous-123
Posted

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
Dugudugu
Posted

@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
Posted

@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
shadowicewolf
Posted

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
anonymous-123
Posted

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
lil'chefy
Posted

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
Marilyn R
Posted

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
GottaSki
Posted

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
Marilyn R
Posted

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
Dugudugu
Posted

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.

Go to topic listing

  • 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. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    2. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    3. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
    5. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,260
    • Most Online (within 30 mins)
      7,748
    sbr
    Newest Member
    sbr
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
×
×
  • 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.