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


alamaz

Recommended Posts

alamaz Collaborator

I've been suffering from night terrors for the past several years, really bad the past year and was wondering if any one had the same thing and the gluten-free diet helped them. These night terrors are so bad that I've run down the steps screaming in the middle of the night - while still asleep :ph34r: . My husband is convinced one night i'm going to fall down the steps and kill myself so he makes me sleep against the wall so it's harder for me to get up and run. I would LOVE for these to stop. Not only do they make my heart beat 500 times a second when I finally wake up out of them but I usually can't fall back asleep afterwards.

Amy


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



Celiac.com Sponsor (A8-M):



jmengert Enthusiast

I had the same thing for years (I, too, would sometimes get out of bed and run for the door), and now the only time I get them is when I'm glutened, so the diet definitely helped me. Hopefully, it does the same for you, as these "dreams" are horrible!

alamaz Collaborator

yeah! i would love for those dreams to go away! they are so powerful and real feeling and only my husband as my witness knew how bad it was - every one else thought i was just having normal nightmares. NOT!

amy

  • 4 weeks later...
gerberer Newbie
yeah! i would love for those dreams to go away! they are so powerful and real feeling and only my husband as my witness knew how bad it was - every one else thought i was just having normal nightmares. NOT!

amy

There are quite a few sleep disorders, one of them is REM sleep disorder which can cause this behaviour.

There are ways of beating this.

You need a referral to a Sleep Disorder Centre, where they will monitor you overnight and video any behaviours. Medication helps this.

Good luck !!

DingoGirl Enthusiast

Hi Amy,

My night terrors began at age 13 (I'm 45), at which point I let out blood-curdling screams at things I "saw" in my room. It was awful, and lasted into my late thirties (but they were not as frequent). I would see enormous insects, or swarms of insects, spiders lowering from the ceiling......people walking through the room.....or I would awake to find myslelf yanking the sheets from the bed or moving furniture around. The older I got, I was somehow able to keep from screaming, sort of talk to myself during the siege and remain calmer...often during these times I would start to pray, and quite often the siege would instantly stop. Makes you think......

I have taken medication to help me sleep for around seven years (seroquel). I simply don't sleep without it. I still have something bizarre happen occasionally, but, come to think of it, since removing gluten over a year ago, I sleep normally about 95 percent of the time. and my dreams, as always, are FANTASTIC....then again, they always have been. Epic in scope, lasting seemingly forever, and MUCH more exciting than my real life. ;)

I hope this gets better for you with gluten removal. If not, I agree with the above poster about seeing a sleep specialist. Or heck, just take drugs. :huh:

Ursa Major Collaborator

I've always, all my life had awful, terrible nightmares. I remember a time a few years ago when for weeks I'd have up to ten a night, and would be afraid to go to bed.

Now I only get those when eating lectins (of which gluten is one). I know I have been glutened when I have nightmares. It is like a miracle how well I sleep now, and how pleasant my dreams are. No more being eaten by ferocious animals, or waking up as I am being murdered, or demons attacking me. I don't have to be afraid to close my eyes and go to sleep now, for the first time in fifty years. I used to wake up screaming in terror. Not any more.

num1habsfan Rising Star

I still get them a lot, randomly too. I can tell you what is the freakiest...when they are RECURRING nightmares :ph34r: . that sure leaves me terrified of even to sleep the next nights. And i can tell you another thing...since getting Celiac is when they have showed up more and more, and when they seem more real. there's a reason why they freak me out too, but its kinda confusing/complicated to explain now.

~ lisa ~


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



Celiac.com Sponsor (A8-M):



chatycady Explorer

I too had terrible nightmares, not to the extreme you have had, but I would wake up in a sweat, heart racing and felt like I had run 3 miles! This has all gone away. I am about 8 weeks gluten free and it's been wonderful!

It may take awhile to get into a normal sleeping pattern and I still wake up around 2:00 and can't fall back to sleep, but it isn't as often. I sleep good when I walk with my friend after work.

Take care. and sweet dreams.

alamaz Collaborator

I'm crossing my finger but I've only had one incident since going gluten-free and it was very mild compared to other episodes and I think soon after realizing I had ate something with gluten in it (for some reason I was convinced there was something "black and dangly" hanging over the bed- my desciption to my husband exactly).

When I was little my intense nightmare was recurring and it was about millions of snakes slithering all around me, on the floor and walls so I couldn't get off my bed. I still get that dream sometimes but the last couple of years it's been people in the house. I can never see faces, it's more like black figures. Very freaky :blink:

Thanks for the advice on the sleep disorder center. I never thought it was a "problem" but if it does intensify I would look into that. The other day when the put me to sleep for my endoscopy it was the best 45 minute sleep I've had in years....before being fully awake I asked for some drugs to take home :lol:

missyf Newbie
:) Wow, it is nice to know that I am not alone. I have, since my teens; I am now 35, had horrible dreams. Things like my children and family members being buried alive and me watching helplessly to being chased by murderers. I figured it must have been something I watched as a child. I never considered it might be Celiac. Has anyone spoken to DR. about this? What advise was given? I still have them, occasionally. Gluten-free for 18 mo.
Nantzie Collaborator

I remember skeletons being in the hallway back when I was four. I had a hard time sleeping as far back as I remember. Once I went gluten-free, I pretty much sleep like a baby other than when I've been glutened. Then it's back to the nightmares and anxiety dreams.

That's the worst part of being glutened as far as I'm concerned. I can take the pain and the GI stuff, but not wanting to face the nighttime stuff is what really keeps me on the straight and narrow with the diet. <shudder>

Nancy

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748

    Becky 0163
    Newest Member
    Becky 0163
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.