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
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    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

    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      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: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.