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

When Does It Stop!?


snowcoveredheart

Recommended Posts

snowcoveredheart Apprentice

hi,

i have been all singing all dancing gluten-free for about a week (althoguh i have blipped slightly) and in that time ive found my sleep has gone to pieces... i suffer from insomnia (it can be really bad) and have lucid dreaming so i have fought really hard to get in to any good sleep patterns, and anything more than 5 hours is a bonus but this week its been awful, i am hot and restless and i wake up shattered with a pounding constant headache! is this normal? will it cease?!

im bordering on desperate!

S

xXx


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

I'm still working out my sleep issues as well. I'm kinda of doing it backwards from an elimination diet. I know that I can eat chicken and potatoes and sleep great, so every few days I eat something different and see if I can sleep through the night. So far I can be fairly liberal with lunch and just restrict dinner.

And I've added in rice and corn kernels :) (but not corn tortillas).

snowcoveredheart Apprentice
I'm still working out my sleep issues as well. I'm kinda of doing it backwards from an elimination diet. I know that I can eat chicken and potatoes and sleep great, so every few days I eat something different and see if I can sleep through the night. So far I can be fairly liberal with lunch and just restrict dinner.

And I've added in rice and corn kernels :) (but not corn tortillas).

i already cant eat lactose / dairy ... i have a really healthy diet and dnt eat after 8 o clock.. this is driving me spare! I cant afford the mental health mash up of not being able to sleep.

Ive been helpping my friend plot her elemination diet (under the hospitals supervision), she just cant see anything but turkey and brown rice for two weeks, and im helpping her see its far more than that with a little thought. Im tempted to start the same way myself, its been years since my diagnosis at the hospital.

Jestgar Rising Star

It wouldn't hurt to try. I can eat just about anything (except gluten) in moderation until about 1pm. After that I'm careful with what I eat. Sometimes it's a little bit of one thing, sometimes it's too much of one thing. It isn't really a restricted diet, just a planned one.

An all-out elimination diet would probably get you your answers much more quickly.

Guhlia Rising Star

I'm not disagreeing with what Jestgar says, but... Perhaps you're still going through the gluten withdrawal period. I think I had about two months where I found it very difficult to sleep and I got raging migraines daily. Then, slowly but surely, it subsided and I began to feel like a human being again. I also had bouts of nausea along with other withdrawal symptoms, but that doesn't mean that someone else would have those same symptoms. Withdrawal can be a nasty thing and everyone experiences it differently.

  • 3 months later...
Janeti Apprentice
I'm not disagreeing with what Jestgar says, but... Perhaps you're still going through the gluten withdrawal period. I think I had about two months where I found it very difficult to sleep and I got raging migraines daily. Then, slowly but surely, it subsided and I began to feel like a human being again. I also had bouts of nausea along with other withdrawal symptoms, but that doesn't mean that someone else would have those same symptoms. Withdrawal can be a nasty thing and everyone experiences it differently.

I'M GLAD YOU BROUGHT UP THAT FEELING OF NAUSEA, HOW ANNOYING IS THAT? SOMETIMES WHEN WE EAT OUT, AND I MAKE MYSELF PERFECTLY CLEAR ABOUT MY NEEDS, I KNOW THAT I HAVE BEEN GLUTENED BECAUSE THAT WAVE A NAUSEA HAPPENS, ALONG WITH THE STOMACH AND RIB PAIN. BUT YOU THINK YOU CAN HAVE GLUTEN WITHDRAWLS ALSO? WHAT DOES THAT FEEL LIKE?

JANET

Guhlia Rising Star
I'M GLAD YOU BROUGHT UP THAT FEELING OF NAUSEA, HOW ANNOYING IS THAT? SOMETIMES WHEN WE EAT OUT, AND I MAKE MYSELF PERFECTLY CLEAR ABOUT MY NEEDS, I KNOW THAT I HAVE BEEN GLUTENED BECAUSE THAT WAVE A NAUSEA HAPPENS, ALONG WITH THE STOMACH AND RIB PAIN. BUT YOU THINK YOU CAN HAVE GLUTEN WITHDRAWLS ALSO? WHAT DOES THAT FEEL LIKE?

JANET

For me gluten withdrawal consisted of horrible migraines, nausea, sweating, horrible mood swings, and intense gluten cravings. It's different for every person though.


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



Celiac.com Sponsor (A8-M):



beachbound Newbie
For me gluten withdrawal consisted of horrible migraines, nausea, sweating, horrible mood swings, and intense gluten cravings. It's different for every person though.

I went through the same symptoms. I see a specialist for my migraines, and I mentioned to her that they were much more severe when I began my Gluten Free diet. I was having them every day for several weeks. When I first told her about my diagnosis, she thought when I went gluten free they would discontinue, hence my extreme confusion when they worsened. One was so bad I ended up calling the Dr. on call. This man was a dr. I never met and I mentioned that I thought it could be withdrawl. He actually laughed. I was very angry and if I wasn't in so much pain, he would have heard from me. I immediately called and made a follow up appt with my dr. and she told me that when the body goes trough any changes, people prone to have headaches will react. It is a sort of withdrawl. After about two months of being gluten free, the migraines have settled down. I also experienced the mood swings and nausea. God bless my husband, he has really been patient. :D

I experienced terrible sweating, dreaming and brain fog when I had been glutened. I didn't really notice that as I went gluten free, but by that time I was so miserable, who knows. I try to block it all out and just move on.

My sleep, even three months into a gluten free diet is terrible. Like you, snowcovered heart, I had managed just about 5 hours. I have tried just about everything over the counter. Tylenol PM, simply sleep, even bought mellatonin. NO HELP!!! I mentioned it to the Dr. that diagnosed me and he gave me a prescription of trazodone. It is suppose to help restore natural sleeping habits . I think, and don't quote me, that it gives the brain seratonin, which is suppose to help with sleeping. It is non habit forming and he said I can take it as long as needed. It is the best thing I have tried. The first week, I had about 8 hours. Now I am averaging 6 1/2 - 7 1/2 hours. That is much better than 4-5 hours. And if I wake up, I feel droggy and immediatley fall back asleep. That is new to me, as before, if I woke up after being asleep, it was at least two hours before I could even try to get to sleep. Since beginning this med. I have noticed I am not nearly as moody. Sleep makes an incrediable difference. I hope some of this has helped. Good luck. I hope things begin to get better for you.

Karen B. Explorer

I've found time release melatonin helps me. In a pinch, I'll add valerian root but I have to take simethecone with valerian or it really gives me problems.

I also sleep with white noise. My co-workers laugh but I use the virtual aquarium from the "Finding Nemo" DVD. It shines just enough light to keep from stepping on a cat on my way to the bathroom. (talk about a wake up! :-)

grey Explorer

Wow - the sleep thing may be withdrawal? I'm 5 weeks gluten-free and the whole time I've been having fractured sleep, insomnia, wanting the light on, vivid dreams, etc etc. It doesn't seem to matter how much fatigue I have - I still have these weird sleep things. And waking up is HARD. I've slept through appts. in the a.m.

I've been beating myself up about how I'll never get my fatigue better if I don't get my sleep patterns under control (more nighttime sleep, get up earlier, somehow fall asleep earlier) -

I suffer migraines and had some nasty multi-day ones when I went gluten-free. Decreased meds AND 1 1/2 weeks w/o a migraine now :) ! (crossing fingers, knocking wood).

Maybe we should have a middle-of-the-night gluten-free newbie support group meeting ;)

cmom Contributor

About 10 years ago, I suffered with terrible night terrors. I would be sure someone was in the house and would be afraid to move in my bed. That rarely happens now that I have been totally gluten-free. It is pretty frightening when it happens, though.

  • 1 month later...
enjoy Newbie
About 10 years ago, I suffered with terrible night terrors. I would be sure someone was in the house and would be afraid to move in my bed. That rarely happens now that I have been totally gluten-free. It is pretty frightening when it happens, though.

New member here this is my first post but I am really struck by this issue of sleep difficulties particularly uncontrolled fears. I have a 12 year old daughter finally diagnosed after 6 years of looking for answers. She just loses control at bed time often and even has started fretting about bed time during dinner now. This seemed to start around the time that she began losing weight several years ago and it was better when she started a gluten free diet. Lately, it is back.

I am so new to this. I am fearing that I may be missing something in her diet that is causing a set back. Do you have a link to info about sleeping difficulties with celiac?

Any help would be appreciated. I really want her to feel safe and happy sleeping not stressed about it as I fear that this "feeling" could affect her for life if it becomes a conditioned response to sleeping.

Thanks,

Joy

stargazer Rookie

Hi snowcoveredheart, when I first went gluten free, the digestive part was fantastic, but everything else in my body seemed to be out of sorts. I had trouble sleeping, headaches, muscle aches, and mentrual problems. I think my body was going through detox. It lasted for a couple of weeks, than everything seemed to calm down. Maybe our bodies need time to adjust to the new way of life. Hang in there, maybe it won't last too long. ;)

Hardyo Newbie

Hi

I was an insomniac before i went gluten-free and it took a while after the diet started but now i sleep like a baby everynight,

the only time i don't sleep now is if i've had something with gluten in.

I also suffered with a migraines daily for three weeks to the point where my brain got into the habit and i had to break the pattern, you could try cutting out caffeine and or dairy products, i know that seem harsh especially at the moment but you don't know if you have any other allergies

I hope things get better for you soon

Goodluck

Lisa Joy Newbie

I've been gluten free for a week now, and it just occured to me today that I feel GOOD. I can't even describe it. It's a miracle really! I have felt so crummy for so long it is like being given a new life.

I, however, am REALLY tired. I cannot get enough sleep. Although I still have trouble getting to sleep. I slept right through on both Saturday, and didn't hear my husband get up and get ready for church on Sunday. I woke just before he was to leave. Monday is my late day to work so I go in late, and I slept in then too. I've had to pull myself out of bed every day, but once I do I feel good.

I hope this is an encouragement to someone. It makes giving up some foods worth it.

Lisa

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,590
    • Most Online (within 30 mins)
      7,748

    uhlissuh
    Newest Member
    uhlissuh
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you 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.