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

Still Learning To Eat Gluten Free. Sleeping 10 -12 Hours. Related?

farnickle

By farnickle
in Related Issues & Disorders

Recommended Posts

farnickle Newbie
farnickle
Posted

I'm still very new to this, figuring out the signals my body has been sending. Low energy, depression, lethargy, weakness were definitely symptoms that lead me to stop eating gluten. I got a quick peak in energy, deeper sleep, and renewed happiness/vitality about a week after giving up gluten. Since then, quite honestly, I've been kind of dense about figuring out the food labeling system. I've used this site a good bit. I believe I've gotten glutened quite a few times. Since I don't have sharp stomach pains, I'm sometimes not sure if I've been glutened or not! I'm still figuring out my body awareness & figuring out what's "me" after these years of putting up with discomfort and low energy.

Probably TMI. Here's the point. I regularly go to bed between 10 and 11. For a couple of weeks I just can't get myself out of bed at all. My husband can bring me breakfast in bed, my dog can lick my face, my alarm can go off, and off, and off.... but I can't wake up until I've had 10 - 12 hours! I've slept past several important engagements (that I was looking forward to!).

Have y'all experienced this kind of sleep as you heal from gluten? Or as a symptom of accidentally consuming gluten? Any advice?

Again.. thanx for this amazing resource!!! I have learned so much on this site & forum. <3

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

Celiac.com Sponsor (A8-M):


Dixiebell Contributor
Dixiebell
Posted

Welcome to the forum farnickle!

Are you taking any vitamins? Have you had your vitamin levels checked? It is recommended that you supplement your diet with them. A good multi, b-complex, fish oil and I'm sure others will have suggestions too.

eatmeat4good Enthusiast
eatmeat4good
Posted

I used to sleep like I was dead.

I couldn't hear the alarm, the phone, my son, nothing.

It was very scary.

I had no idea what had happened to me.

Once I slept for 20 hrs and didn't know what day it was.

Woke delirious and confused.

It went away in the second month gluten free.

The first month I still needed like 10 hrs a night.

Now I sleep normally and wake with no problems.

Hang in there.

It will get better.

shopgirl Contributor
shopgirl
Posted

If the doggie is eating food with gluten in it, it's not a good idea to let him or her lick your face. That's one way to get glutened. ;)

  • 2 weeks later...
mom2three23 Newbie
mom2three23
Posted

I actually feel a bit more normal now. You have described me to a T. I also experienced the peak shortly after going gluten-free, and was very excited, but then the valley again. It is good to hear that it will get better! I had a vitamin D panel done and my D levels were bottomed out. I have been started on a good VD oil (health food store) and I do think it is helping! Maybe we can figure this out together (I am newly diagnosed and trying to find my way . . .)

glutenfreesavvy Rookie
glutenfreesavvy
Posted

Sleeping a lot could also be a healing response. I do require extra sleep after accidental glutening, in fact I'm completely exhausted at first & have to sleep it off, so to speak. The only way to know that you're not getting small amounts of gluten is to prepare all your food yourself, from scratch - no processed or prepared anything for a while, even if it's labeled gluten free, imho. I've been glutened more than once from "gluten free" foods. I've blogged about it, if you're interested in more details. :)

I wish you all the best while you're in the depths of figuring the whole gluten-free life out. :)

warmly,

Faydra

rahga Newbie
rahga
Posted

I had a similar experience. This lasted close to a year for me: sleeping 10 - 12 hours (sometimes more) with occasional bouts of insomnia. Vitamins (double dose) help, as do digestive enzyes and fiber. At least that has been my experience. I am 56 and was diagnosed in November of 2009. I was strict about my diet from day one and by October or November of this past year my energy was back to near normal levels. I still have an occasional day when my energy lags or when I cannot get to sleep. Most days, though, I feel terrific. My guess is that if you remain patient with this, life will slowly come back together for you.

I hope that helps.

I'm still very new to this, figuring out the signals my body has been sending. Low energy, depression, lethargy, weakness were definitely symptoms that lead me to stop eating gluten. I got a quick peak in energy, deeper sleep, and renewed happiness/vitality about a week after giving up gluten. Since then, quite honestly, I've been kind of dense about figuring out the food labeling system. I've used this site a good bit. I believe I've gotten glutened quite a few times. Since I don't have sharp stomach pains, I'm sometimes not sure if I've been glutened or not! I'm still figuring out my body awareness & figuring out what's "me" after these years of putting up with discomfort and low energy.

Probably TMI. Here's the point. I regularly go to bed between 10 and 11. For a couple of weeks I just can't get myself out of bed at all. My husband can bring me breakfast in bed, my dog can lick my face, my alarm can go off, and off, and off.... but I can't wake up until I've had 10 - 12 hours! I've slept past several important engagements (that I was looking forward to!).

Have y'all experienced this kind of sleep as you heal from gluten? Or as a symptom of accidentally consuming gluten? Any advice?

Again.. thanx for this amazing resource!!! I have learned so much on this site & forum. <3

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

Celiac.com Sponsor (A8-M):


horseshoe Newbie
horseshoe
Posted

Pretty much, farnickle, you described some of my problems near exactly. Up until this past year I was a normal 8 hours a night person with drive and energy to do things. Then, about six months ago, I started sleeping longer and longer and longer. Around this same time (6mo) I stopped having energy to exercise or motivation to do things because I was/am always tired and needed a nap after every meal (or so it seemed.)

I've only been gluten free for a couple of weeks (still get CC sometimes) but I can actually do my job and I wake up when my alarm goes off instead of turning it off and sleeping three more hours. I'm hoping I can slide past the setbacks that others have commented on having (fingers cross :D).

cyberprof Enthusiast
cyberprof
Posted

I used to sleep like I was dead.

I couldn't hear the alarm, the phone, my son, nothing.

It was very scary.

I had no idea what had happened to me.

Once I slept for 20 hrs and didn't know what day it was.

Woke delirious and confused.

It went away in the second month gluten free.

The first month I still needed like 10 hrs a night.

Now I sleep normally and wake with no problems.

Hang in there.

It will get better.

I'm so glad that I read this thread. This used to describe me when I was young (and on gluten) and describes my son now, even though he is gluten-free. However, he is not as strict as he could be. He's a gifted student and a good kid but he can't wake up. I was wondering how he'll be able to survive next year at college. I've convinced him to be really strict for a month or two to see if it helps.

123bree7797 Newbie
123bree7797
Posted

I used to do the same thing it will go away in time

cap6 Enthusiast
cap6
Posted

I was the same. My iron levels were very low. You might have that tested. You may also just need the healing sleep. I slept 10 to 12 hours a day for months & am just now at the point where I can get along on 9.

Chiana Apprentice
Chiana
Posted

I am 4 months in and I'm still really variable on how much sleep I need. Sometimes I have to nap for four hours in the middle of the day after 9 or 10 hours of sleep at night.

I'm so glad that I read this thread. This used to describe me when I was young (and on gluten) and describes my son now, even though he is gluten-free. However, he is not as strict as he could be. He's a gifted student and a good kid but he can't wake up. I was wondering how he'll be able to survive next year at college. I've convinced him to be really strict for a month or two to see if it helps.

Actually, as long as he is smart about when he schedules his classes, he'll be ok. I don't schedule anything before noon unless I absolutely have to. (It was actually my terrible minimum-wage job that suffered.) Though, he may get more strict on his diet when he realizes that he could be out having fun instead of sleeping all the time.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • 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

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.