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

Sleep Issues...normal?


CeliacAlli

Recommended Posts

CeliacAlli Apprentice

I have issues with sleep. Sometimes I can't fall asleep til' 3 am. and sometimes I go to bed at 7 pm. But even I feel like I got the same amount of sleep and that amount is far from enough. I never want to get up because my mind is so sleepy, and I am constantly exhausted from doing nothing! I am a teenager too and it's normal to sleep alot but people my age feel rested after sleeping...Suggestions...Why?...and has it happened to you?


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Have you told your doctor about this? Have you done a sleep study? It seems more and more people are suffering from sleep apnea.

I didn't realize I had a "real" sleep problem. Then my neuro diagnosed me with sleep apnea, I did a sleep study, and now I know I do have it.

A few weeks ago, in another forum, my friend Al bumped an old thread up and in it they asked what had changed for us physically since going gluten free. This thread was 4 yrs ago, and I said many things had improved, but I still was having sleep problems. I do not even remember saying that, yet it's obvious that I had sleep apnea even then.

If you haven't yet, talk to your doctor about this and see what he/she says.

ohsotired Enthusiast

Alli - I can totally relate. I can sleep for 6 hours or 16 (and the 16 seems to be more and more often) and still feel like I haven't slept for a week when I wake up. It's recently come to my attention by my dear sweet husband, that sometimes when I'm sleeping - I stop breathing.

I found this out when he physically shook me awake at 4am one day last week. I'll be seeking a sleep study ASAP.

GFinDC Veteran

Hi Alli,

I've had sleep problems for years. I got much better though after going gluten-free and was able to sleep kind of normally. I think to some extent not sleeping can be caused by the general disruption of the body due to fighting off gluten or other food intolerances. In my case I do have a specific reaction to gluten related to sleep due to my thyroid acting up. I get glutened and I can't sleep. The thyroid goes into overdrive and that's it for any sleep. I have a reaction to either sulfites or yeast now too, although I am not sure which. Anyway, if you are sure you are gluten-free, then I suggest you think about other foods that might be affecting your sleep. It could be you have another food issue that is causing problems.

mirabella Apprentice

Hey there,

My dr. just told me that celiac and thyroidism are common together because of not being able to absorb nutrients.

Mine came back hyperthyroidism, which is due to not enough iodine. Falling asleep takes forever. I also get up and down several times a nite because I am starving. Thank goodness for fresh vegies and fruit.

Its exhausting sometimes.

lsmall05 Newbie

Definitely consult your doc!

Sometimes its hard for your doctor to know what to do for Celiac, but ask if he can order bloodwork. We ALL hate bloodwork, but you sleep and/or lack of energy problems could easily be a vitamin or mineral deficiency. Anyone that has absorption issues should be on some vitamin supplements! Your doctor should be able to take a look at bloodwork of your B's C's and K to see if you are running low.

I drink more Gatorade since I have low Potassium! easy fix!

  • 1 month later...
missy'smom Collaborator

You should ask about your adrenal gland function. My sister had the problem that you described and her adrenal gland wasn't functioning correctly, which is common with Celiac, and once she started treatment, which in her case was some special supplements, her sleep started falling back into normal patterns. From what I understand the adrenal gland releases hormones that tell your body when it's time to sleep and wake up.

I don't eat after dinner now and find that I sleep better. If I eat an evening snack, I think my body is digesting all night and that keeps me from getting better sleep.


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



Celiac.com Sponsor (A8-M):



heiko.d.26 Newbie

Sleep is really important and therefore sleeping issues shouldn't be taken lightly but you should definitely consult a doctor.

A good friend of mine also suffering from celiac disease had also big trouble with sleeping and basically he would wander around the house all night. At first he didn't want to get himself any help, but I could persuade him to go and see a doctor who could really help him in the end.

Fortunately I don't have sleeping problems!

Josh Parker Newbie
I have issues with sleep. Sometimes I can't fall asleep til' 3 am. and sometimes I go to bed at 7 pm. But even I feel like I got the same amount of sleep and that amount is far from enough. I never want to get up because my mind is so sleepy, and I am constantly exhausted from doing nothing! I am a teenager too and it's normal to sleep alot but people my age feel rested after sleeping...Suggestions...Why?...and has it happened to you?

Insomnia is normal with celiac. I usually get on the internet and eat something in front of my computer. The worst thing that you can do is lay there frustrated, staring at the ceiling. Sometimes the DH that is associated with celiac will keep me awake. In extreme cases, I will get up and go to Waffle House or the grocery store. When I come back, I usually go right back to sleep. Reading in bed is a good way to confront the frustration with insomnia, and get back to sleep if you don't want your roommates to think that you are crazy for going to the grocery store at 3am.

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. - trents replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    2. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    3. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

    4. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    5. - Scott Adams replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      My journey is it gluten or fiber?

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    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

    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
    • Scott Adams
      Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again.
×
×
  • 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.