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 & Leg Pain


angie315

Recommended Posts

angie315 Apprentice

My daughter has only been gluten free for 2 months. Last night she took a bath (I used California baby body wash by regular shampoo). She was playing in the tub and putting water into her mouth and spitting it back out. About two hours after she was asleep she woke up screaming and didn't respond to my voice. She only woke up after she peed herself. It happened again later in the night and she then awoke a third time moaning that she was having "growing pains" in her legs. Is night terrors and muscle aches/pain a sight of ingesting gluten? She has never had the typical GI symptoms (no diarrhea) so I wasn't sure if this is how her body reacts to gluten now. Anybody has seen this?


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



Celiac.com Sponsor (A8-M):



Aleshia Contributor
My daughter has only been gluten free for 2 months. Last night she took a bath (I used California baby body wash by regular shampoo). She was playing in the tub and putting water into her mouth and spitting it back out. About two hours after she was asleep she woke up screaming and didn't respond to my voice. She only woke up after she peed herself. It happened again later in the night and she then awoke a third time moaning that she was having "growing pains" in her legs. Is night terrors and muscle aches/pain a sight of ingesting gluten? She has never had the typical GI symptoms (no diarrhea) so I wasn't sure if this is how her body reacts to gluten now. Anybody has seen this?

I know that the leg pain definitely seems to be and when I searched on google for "night terror celiac" it came up with almost 80,000 links to do with that... I read a few and it does seem to be a symptom

debmom Newbie

My daughter had insomnia and restless leg syndrome until she went gluten free. She still has some problems occasionally, but not nearly what she had before the diet.

2kids4me Contributor

My son had leg pains and wet the bed almost every night til he went gluten free after we found out he was celiac. The bed wetting took about 6 weeks to resolve - it gradually got less and less til none at all. He was 9 (almost 10) when diagnosed.

The leg pains took about 3 months to disappear totally. They went from every night to about once a week to very couple of weeks before being gone altogther.

He gets leg pains if he gets cross contaminated.

My daughter used to have night terrors as well - they can be related to celiac but are also known as common issue with children under age 10.

Night terrors on the same night as leg pains - may just be the body responding to the pain (?) That's just my theory.

Ursa Major Collaborator

It sounds like your daughter got glutened by whatever was in the bath water. There must have been gluten in the body wash!

Kaycee Collaborator

Just to say as a child I had night terrors. They were very scary, and I would wake the whole house screaming and then not remember what had upset me. Sheer terror. The last time I had a similar attack was when I was in my late teens, by then, they weren't very regular. I was a very nervous child and maybe just scared of my own shadow. I'm sorry but I can't say whether they were related to gluten or not. Hope this is not what your daughter has.

What I can say, is that many years later,and now glutenfree, when I get glutened I have pretty graphic dreams, some are terrifying others are just so graphic. So I think gluten does affect my sleep. But I never wake up petrified.

Cathy

ryebaby0 Enthusiast

My oldest son (not the one with celiac) had night terrors several times a week for about 18 months when he was little (like 5-6y.o.). They are not uncommon in children, and aren' t a sign of anything in particular, usually. They almost always go away just as mysteriously as they arrive. They are more common in children who's parents had them, or were sleepwalkers (I was)

We found if we got to him when he first started one (which was generally about 1 hr. after he fell asleep) it would be a little shorter. Occasionally he would sleepwalk, too! It surely is freaky! He would have absolutely no recognition of us, and no memory in the morning of having done anything but slept soundly. Our pediatrician said to not try and wake him, just keep him from getting out of bed.

As everyone here will tell you , leg pains are often a celiac symptom. Whether she was glutenated or not is anybody's guess!


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

The first thing that comes to mind is if there was any gluten residue in the tub. Especially on or under those rubber grippy non-slip things. I do know that muscle twitching can be from a nutrient deficiency, magnesium in particular. But in this case it just sounds like either a reaction to gluten or other offending substance.

jhow32000 Rookie

The California Baby is not the problem. She probably got contamination from something else. I have to say that I have been plagued by these leg pains for years and we always thought they were growing pains. Now everytime I eat something contaminated I get them almost immediately. I believe that night terrors are from dairy allergy or intolerance, which of course is common with celiac disease. I know that the lactase enzyme is the first to disappear from the damaged intestine. Perhaps you should cut out all dairy if you haven't already and check everything for a source of wheat or dairy. These things will happen throughout her life, I still get the stupid leg pains and they are a KILLER. Just retrace your steps to find the issue.

Lizz7711 Apprentice

My daughter gets leg pains and occasionally wets the bed when glutened, or also I think from corn...still trying to track it to be sure. No night terrors though.

Liz

My daughter has only been gluten free for 2 months. Last night she took a bath (I used California baby body wash by regular shampoo). She was playing in the tub and putting water into her mouth and spitting it back out. About two hours after she was asleep she woke up screaming and didn't respond to my voice. She only woke up after she peed herself. It happened again later in the night and she then awoke a third time moaning that she was having "growing pains" in her legs. Is night terrors and muscle aches/pain a sight of ingesting gluten? She has never had the typical GI symptoms (no diarrhea) so I wasn't sure if this is how her body reacts to gluten now. Anybody has seen this?
CeliacMom2008 Enthusiast

I'm so sorry you had to go through a night terror! I think every parent should be told about night terrors BEFORE they happen. The first time my son had one we were at my parents and it scared all of four of us adults tremendously. We had given him an asthma breathing treatment for the first time that night and we were all convinced it had done something to his brain. It was just awful! I still hate going through them, but at least now I know I don't need to call 9-1-1. The staring "through" you still turns my stomach when it happens though. For us, at least our son never has any recollection of them occuring.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.