Sleeping

[lorraineeischen]

Hi! I would like to know if anyone who has celiac disease has trouble falling asleep and staying asleep. My son, who is thirteen, has trouble falling asleep. He sometimes doesn't fall asleep until 3 or 4 in the morning and has to get up at 7:00 for school. Also, I am having him tested for ADD as he has trouble concentrating on his school work. Is ADD syptom of celiac disease. Is there a higher percent of children who have celiac disease also have ADD? PLEASE I would like to hear from anyone who have these syptoms. Lorraine

[Virginia Mom]

Hi!  I would like to know if anyone who has celiac disease has trouble falling asleep and staying asleep.  My son, who is thirteen, has trouble falling asleep.  He sometimes doesn't fall asleep until 3 or 4 in the morning and has to get up at 7:00 for school.  Also, I am having him tested for ADD as he has trouble concentrating on his school work.  Is ADD  syptom of celiac disease. Is there a higher percent of children who have celiac disease also have ADD?  PLEASE  I would like to hear from anyone who have these syptoms.  Lorraine

<{POST_SNAPBACK}>

My daughter has celiac disease and she has trouble falling asleep. I don't know if there are any studies on ADD, but yes she has had ADD also. Virginia Mom

[swittenauer]

My husband has a horrible time falling asleep & then when he finally gets to sleep he is up again. He has major insomnia. I read somewhere, I thought here, that it was a symptom of celiac.

[Silver-naki]

I'm still trying to "tie-in" the symptoms of Celiac & "gluten" with my horrendous sleep patterns... I haven't quite figured it all out yet, due to the fact, I'm still adjusting my DIET, & not being gluten-free yet for too long.

I may have got "glutened" just last night, (even tho I watched what I ate!!) and I was ^up^ and awake ALL NIGHT LONG----- I was sooo tired mentally, but was just "wired." I did everything I could think of, from playing on the Computer, to READING a Book, to taking a hot bubble-bath, to putting lotion & powder on, laying beneath a "fan," ("night-sweats" here folks, as well!) to wandering around the house. I finally dozed off around 5:30 am on the COUCH this morning.

I do have sleeping pills I can take, and dang........ I'm taking one tonight!!! For sure!!!

I can't actually help any of the folks out on the Board here, in regards to their children who may suffer so bad with the sleep disorders and all, because I don't have any children. It's just me... in my misery here, and "sleepless" out on the Ranch! If it was Summer time here, I'm sure I'd be wandering around outside, going out and petting my Horses, or something like that... actually taking a "hike" just to make myself tired. The only suggestion I can think of, is to perhaps get a good sleeping pill (or aid) from your Doctor. I hate taking pills just like the next person, but sometimes a body has to~

[sneako]

I had a problem falling asleep 2 months ago, would stay up till 4 am or so, then my doc prescribed me Seroquel, I literally pass out within 45 minutes of taking it, but if I encourage myself hardcore to stay up past the 45 minute mark, then I get one of the best body highs I have ever had Problem now though (3 weeks into taking it) is that I am addicted to it for sleep (not the high). If I dont take it I can fall asleep within an hour of lying down, not bad, but then I wake up 3 or so hours later too tired to open my eyes, but I can't sleep the rest of the day, unless I take a hit of seroquel, then I'm out for another 10 hours.

[ianm]

I used to have all kinds of sleep problems but after nearly two years I rarely do. Melatonin helps when I can't get to sleep.

[CMCM]

Hi! I would like to know if anyone who has celiac disease has trouble falling asleep and staying asleep. My son, who is thirteen, has trouble falling asleep. He sometimes doesn't fall asleep until 3 or 4 in the morning and has to get up at 7:00 for school. Also, I am having him tested for ADD as he has trouble concentrating on his school work. Is ADD syptom of celiac disease. Is there a higher percent of children who have celiac disease also have ADD? PLEASE I would like to hear from anyone who have these syptoms. Lorraine

Every so often, maybe once a week or once every couple of weeks, I simply will NOT be able to get to sleep at all. I will be awake all night long. My body might feel tired, but I just can't seem to fall asleep. Sometimes I just lay there, sometimes I get up and do things, read, watch TV, do whatever, but then maybe at about 5:00 or 6:00 in the morning I'll finally doze off for awhile. This drives me nuts, I hate it. Otherwise, I do regularly have a hard time falling asleep. I have to get in bed and read or something for awhile to try and get sleepy. And I'm a light sleeper...if I get awakened an hour or two after falling asleep, many times I won't be able to get back to sleep. I don't want to take sleeping pills, though. Sometimes I take a couple of valerian pills, but I'm not sure they do anything. Maybe they help a bit.

[Silver-naki]

After replying to this Post earlier.... I still went through a tremendous time with being SLEEPLESS, these past days & nights~ Dang, it got so bad, I had to get some "rest!" Unfortunately, I have had to resort back to taking AMBIEN in order to go to bed, and try to get a good night's sleep. So far, this is the only thing that works for me.

My Dr. had put me on LUNESTA last Summer, but that stuff tended to give me a sleeping pill "hang-over" in the mornings, so the Ambien works better for me. Taking sleeping pills, is NOT my idea of a good time, but heck, one has to do something in order to get "REST." Thus far, I am not far enough along into my "gluten-free" diet for things to kick-in yet. I'm thinking it will be a matter of time, before things start to level out within my system.

I truly wish I had some good advise for all the ones who are also SLEEPLESS out there..... maybe I can post a more positive "update" as time goes along......

[jerseyangel]

Since I began healing, I go to sleep very easily. The problem is that I rarely stay asleep all night. I either have to use the bathroom or get hot flashes that wake me up. These are not associated with the Celiac, I don't think, in my case. In all, I believe I sleep better now than I did before.

[debbiewil]

Before going gluten-free, I had very erratic sleep. I'd fall asleep easily, but only sleep for 2-3 hours, then be awake for 2-3 hours, then sleep again for another couple of hours. Needless to say, I was always tired, but just couldn't stay asleep long enough to get some really good deep sleep. Since going gluten-free I've been doing better - a little bit longer every month. I now sleep 5-6 hours straight, which is usually enough to make it through the day, although I drag a bit by evening. I'd like to get it up to the 6-7 hour range, which is what I slept most of my adult life, until I started having health problems.

Debbie

[Nantzie]

I've always had a hard time falling asleep. I even remember as a little kid crying because I was so tired and couldn't fall asleep. I've also had problems with memory and concentration since I was about that age. I was never tested for ADD, but I'd bet if I were I'd have been diagnosed with it.

Now that I've been gluten free, I can guarantee if I get glutened, especially in the evening, I will lay awake all night. It's as if my brain just won't turn off.

Keep in mind also that a person doesn't need to have classic celiac disease (intestinal damage) in order to have issues with gluten. My blood work has come back indicating that when I have my biopsy, they probably won't find intestinal damage. No intestinal damage means no celiac disease.

BUT...

When I don't eat gluten, I feel like a completely different person. I can concentrate, I am more engaged in life, I enjoy my day, I'm not depressed or anxious or angry. I have been struggling with chronic pain for years now, and the pain just isn't there when I'm off gluten. I also always had a headache to the point where I didn't even realize I even GOT headaches. Seriously. I guess I just thought that's what my head was supposed to feel like. Now when I eat gluten one of the first things that happens is my entire body is in pain and I get a MONSTER headache.

Off gluten, I can SLEEP. And it's more than that. When I lay down and turn off the lights, my brain isn't going 100 miles an hour. I feel like I fall asleep like a "normal person." I still think about stuff, but I drift off in the middle of it. I don't think I've laid there for more than a half hour or so, which is incredible. Even better is when I wake up in the morning. My quality of sleep is infinitely better. Completely different, actually. It used to be that if I had all the time I needed to sleep, my body would want to sleep for 12 hours, but I'd still be groggy when I woke up. Now, when I wake up I'm actually AWAKE. I don't struggle through the day just trying to stay awake until my kids go down for a nap so I can go back to sleep. I used to have to drink coffee or an energy drink just to stay awake. And I was still SO tired.

If you want him tested for celiac (intestinal damage), you HAVE to keep him on gluten until the testing is done. But, even if the testing for celiac disease is negative, I really hope you try at least a trial period off of gluten becuase even if he doesn't have the intestinal damage that means celiac, he could have issues with gluten nonetheless.

I feel like if celiac / gluten intolerance was something that was known about back when I was in school, I would have done much better, and maybe even gone to college. I was always one of those kids who "was very smart, but didn't apply herself". I always thought they were full of it, because I knew I had a bad memory and couldn't seem to hold onto information. Now that I know how gluten effects me, and how gluten effects my sleep, I can see what was happening. Part of it was sleep deprivation and poor quality of sleep due to gluten, and part of it was the neuro/psych aspects of gluten.

I ended up doing the genetic testing for celiac, and I don't have either of the two main celiac genes. I do have the gene that indicates "gluten intolerance." Comparing my symptoms to other people on here who also have the same gene, it seems like we all have many of the same symptoms. If we were to stick with the cut and dry approach to celiac (if there's no intestinal damage then there's no problem with gluten), our lives would be much less comfortable.

I hope that learning about this world of celiac and gluten intolerance is the beginning of a new and better part of your son's life.

Nancy

[floridanative]

I don't have trouble falling asleep except very rarely but when I do I take Sominex (mild OTC) and it works like a charm. I take it so infrequently that some of the pills expire before I take them and I throw them out and get a new box. Well after getting my Celiac dx yesterday in the late afternoon, I was totally wired last night so about 1 am I went and got my Sominex and it was another hour before I was out. But now today when I check the Delphi list so I can get safe make-up I dont see any OTC sleeping pill on the list. Unless I'm convince my life depends on it I won't ever take another rx sleeping pill. I got hooked on Ambien two years ago when I could not sleep due to nerve pain from the shingles (which I now know I got because I'm Celaic). So does anyone know of a gluten-free OTC sleeping pill I can take? I don't need it tonight as I am exhausted already today. Any help would be appreciated. Update - finally found the Sominex box and reading the ingredients it seemed apparent that it was gluten-free but I called Glaxo-Smith anyway and they confirmed it's gluten-free. Yea!!

Silver_naki - my pcp put me on Evening Primrose oil (supplement) and Nat. Progesterone cream to deal with pre-menopausal symptoms. I am like a new person. The prim. oil is gluten-free but I'm waiting on an answer about the Prog. cream. Update the cream is gluten-free (www.life-flo.com). I get mine from Viatacost since it's cheaper there.

[Carriefaith]

Hi! I would like to know if anyone who has celiac disease has trouble falling asleep and staying asleep. My son, who is thirteen, has trouble falling asleep. He sometimes doesn't fall asleep until 3 or 4 in the morning and has to get up at 7:00 for school. Also, I am having him tested for ADD as he has trouble concentrating on his school work. Is ADD syptom of celiac disease. Is there a higher percent of children who have celiac disease also have ADD? PLEASE I would like to hear from anyone who have these syptoms.

I can sometimes get mild insomnia from gluten. Maybe try reducing your intake of salt and caffeine. I just read recently that a high salt diet can cause insomia.

[ms-sillyak-screwed]

Hi all!

I'm here looking for some answers to why I can't sleep. I have been Gluten & Dairy free for 5 years now and I'm not sure what the problem suddenly is. I have always been a night person my entire life I thought it was because I was born at 1:50 a.m. [giggle] and love the night... I don't have kids or a j-o-b so my time is my own. But in the last few weeks I'm sleep deprived. I normally go to bed around 2 a.m. and if not I fall asleep by 4 a.m. I get 8 or 9 good hours of sleep and wake up rested when ever my body wants to wake up. And I sleep uninterupted for the most part. But something changed I thought it was my thyroid medication but the doc said my levels are nornal. I do drink coffee and decafe at night. It was never a problem before. But something has changed. I can't fall asleep. At 4 a.m. 5 a.m. I toss and turn until the I hear the birds chirping at 6 a.m. outside my window and can sence the sun coming up. I wake up and I'm not tired and this has gone on for a few weeks now. I getting by on a few hours a night now. Last night only 3 hours. I can't keep going like this. I know my migraine will flare up and they are unbearable. I haven't had them in a long time.

I don't have GLUTEN on my system I keep a food journal and know everything that goes in to my mouth.

I do have second food allergies like SOY, CORN, LEGUMES, and NIGHT SHADE VEGGIES. This only happend following a serious thyroid problem that developed after what I now believe was from being POISONED by SOY. I am a Celiac that suffers seizures from these things and it causes me anxiety, in the way of post tramatic stress. I have managed it with out meds only because of the expense and the filler and binder in drugs make me ill. This last week I had two seizures from [food allergies shots] I had. As I type I wonder if that is what has caused my sleeplessness. I can't do Melatonin because of my thyroid medication I was told.

Silver_naki -- How are you doing with the AMBIEN? I read saw something on my local news they are having a problem with people geting into day time accidents from taking AMBIEN. Or they were doing things as if unaware they were sleepwalking and would wake up and not know they were doing something. Follow me?

floridanative -- I remember one of my private pilots I knew he said AMBIEN is what all the pilots took before it became mainstream. And that it wasn't addictive... However I know everyone's body is different. Are you really againt it? Did it not agree with you to well? if you don't mind me asking why?

I know I have to do something, but don't know what to so. Any ideas? Or perhaps anti anxiety med might take the edge-off and I can slip off to sleep. But don't know where to begin, many have CORN and etc...

[paulasimone]

I'm here looking for some answers to why I can't sleep.

i'm sorry you can't sleep! i have issues with this too, not bad right now, though, thank goodness.

re: your sleeping problem, my first thought too was thyroid. is your doctor one you love or a dismissive one? cause it's been my experience that what doctors consider "normal" range is really quite expansive and arbitrary - what's "normal" to one person is not to another. i used to have to take armour thyroid, but after being gluten-free for a while the hypothyroid problem pretty much resolved itself. everyone's different, but maybe your diet (off gluten, off soy) is paying dividends? have you experimented with slightly cutting down your dose?

it's a shame you can't take melatonin - it saves me.

i did ambien for a while - it definitely will knock you out - only take it if you are *ready* to go to bed. it only used to buy you 6 hours, though, but i saw an ad on the tv (grrrr pharmaceutical company advertising budgets!!!!) saying it's now reformulated for i think 7-8 hours?? it's hard for me to say what the side effects were just because i was also taking other meds at that time.

now i just do melatonin at bedtime and cal/mag supplements at dinner. from what i've heard/read, calcium is v important to sleep. (and i think magnesium important to calcium?) so if you're not doing those yet, i'd suggest doing it. and a multivitamin if you're not already.

and don't eat too close to bedtime. and - really i should probably have put this first - decaf coffee still does contain a little caffeine! (as does decaf tea.) drinking it routinely at night is probably not good idea. especially since we have such wack absorption - seems like it can really magnify some things, obstruct others.

and really caffeine during the day can have that lingering effect, too - it is has a really powerful impact on our bodies - try going off it (you should!) and you'll see. (btw, this great guy that works at my favorite gourmet store/coffee shop calls coffee "poison" like you call soy. he's like, "you couldn't pay me to drink that." he's a barista at the coffee bar!!!)

so my advice is going off caffeine and taking calcium supps. i went off of caffeine maybe 5 months ago (iced tea, cola, and occasional espressos) because of my sleeping problems and they are *way* *way* *way* better. my general level of anxiety is better, too. (cheating alert - i still eat chocolate occasionally, but never at night.) maybe wean yourself down to decaf during day and no coffee at night? (i know, like you don't already have enough dietary restrictions!!!)

all said, ambien wasn't ultimately satisfying, but it wasn't the most evil of the meds i've taken. it came in handy when i wasn't hip to all the other things.

good luck!

paula

[ms-sillyak-screwed]

paulasimone -- Thank you for your thoughts and you are right-on it.

The thyroid doc is very nice but I really question her ability. She went on vacation right after my RAI and I had no way of contacting a doc for weeks and without being on any thyroid meds following it I have developed a heart issue now. Beyond that -- I have called around other typed of docs looking for another and everyone points me back to her. Perhaps they are all friends? She [had] a partner I spoke w/him when I had a bad reaction foollowing the RAI and had a seizure and asked if I should go to the ER and he said "no they won't know how to treat you and will make it worse." Everyone in town says he has a bad bedside manor and no one really likes him but says he's is a good doc. I was thinking of going to him to get another opinion.

I totally agree with you that everyone's bodies are different and normal range might be different for you then I. I found that out with my HRT homone replacement years ago. I believe that whole heartly. I said that to the thyroid doc but she doesn't really get it. When I go into her office she always tells me how beautiful I am and how good I look, she loves my outfit or etc... Last time when they weighed me I'm 98 - 100 lbs, from nomal was 110 -112. She said, "Do you know how many woman would love to look like you at your age, thin and beautiful!" I'm mid 40's now, and I wear make up and am a real diva with it and clothes. (It goes back to my volenteer work for the 'look-good-feel-better' work I did for the cancer society) I find when I feel really bad I paint a smile on my face, do my hair do, and pick out a glamours outfit and I do feel better when I see myself in the mirror. But I'm still sick. The last time when she told me my range is normal she just wanted to 'girltalk' and suggested anti depressents but everything she has perscribed his gluten, corn or dairy. And I feel I need to try something else. After 2 seizure this last week following food allergy shots for corn and etc. I am looking for answers myself and think I have to find something else to take.

The thing about my dose is I am taking 88 MCG and I know/feel it's too much. Last time she gave me samples of 75 MCG and I felt [really bad] the one or two days I took them. She and the pharmisit said people have a problem with the purple die in the 75 MCG. I am thinking of going back to the compounding RX because it did work better 75 MCG. I stopped only because 2 hurricanes last year and being without water, power and etc., over 3 wks I was unable to refrigerate the RX and reverted back to LEVOXYL. Hurricane season is 45 days away and this year I'm going to spend the summer some place else and (some of us are talking about marching on WASHINGTON to fight the government about our celiac disease cause) and I can spend some of the summer up north and not be around the hurricane stress (4 in the past 2 years is enough for me). But there again it need to be refrigerated and traveling poses a problem. Well, I worry about that another day [giggle].

One more things about the meds I did try AMOUR THYROID and did over all feel a whole lot better, but within a few weeks I develoed a blister on my tonge and later found out I am allergic to PORK and that is what it's made of. So I stop and when back to the other.

Carriefaith -- posted about salt I'm going to take her advise and reduce it to.

COFFEE is posion you are right, I know. I enjoy that taste I brew it black with fresh anise and some sugar. I have so many limitations in my diet and I miss dessert and this and dark chocolate is my treat. Also coffee really helps with my headaches. And it makes me feel good, when I feel bad...lol But I WILL take your advise and cut way back. Thanx my friend! Oh and the other thing is chocolate... I do eat it at night, not in the day time at all. I will make some changes.

cal/mag is great idea... There again something I stopped. I did do that and it did really work. I was taking BLUEBONNET LIQUID CALCIUM MAGNESIUM CITRATE. It did wonders ! I stopped and it slipped my mind. It is back on my shopping list for my next trip to whole foods tonight. I saw a program that said cal/mag doesn't work for sleep if not taken together and you MUST take it in liquid form to be really effective. A test to see if it is absobed try this - take a pill put it in a galss of water. Stir it up. If the water doesn't disolve completely clear your body isn't absorbing it. I tryed it with the Bluebonnet liquid and it worked. So thanx again for reminding me I'm going back to it tonight.

Sorry for being so long winded and listening.

Many hugs and sleep well to you too!

[schuyler]

I have had lots of sleep problems. My doctor told me that celiac can cause insomnia, but he didn't give me any meds to help it.

Danielle

[glutenexpat]

Like many of you, I also have been struggling with sleeplessness. I had no considered the possiblilty that it could be a symptom of celiac disease, as I have other health issues that cause pain and fatigue, so I have just chalked the sleeplessness up to being related to those problems. The past two weeks it has been unbearable, I lay awake for hours, usually until 5 or 6 am, then I fall to sleep for an hour before it is time to get my child up and off to school. I usually return to bed and it takes another hour to get back to sleep. I usually wake then at about noon and feel that I have waisted the entire day. That leaves me about two hours to get my chores and errands run, before it is time for my child to return from school.

This is effecting every aspect of my life and despite trying various non-medicine related tatics to get to sleep, I am still suffering. I am at the point that I am going to have to consider yet another medication in order to get some sleep and be a useful member of my family and society. All this to say that I feel your pain and hope for a better nights sleep for all of us!

-T

[Mia H]

I'm having this problem too. It seems if I eat late at night that makes it worse, my gut is just digesting all night long and keeping me up or half awake all night.

I have been taking a natural remedy called "Calms" by Hyland's. Its available at the natural food store and doesn't give me a hang over and I don't need it to fall asleep (no addiction)

Mia

[Saz]

Hey guys.

I have always had trouble going to sleep, however in the last 18 months it has got better. I can be really tired and go to be bed a lie there for two hours however once I get to sleep I will usually stay asleep.

I had alway put this down to just being the way my body worked.

I was diagnosed when I was 6 (am now 19) Between the ages of 6 - 15 I was had very little gluten (im not sensistive so would sometime get a dounut or something) Even during this time though I still had trouble getting to sleep. I can remember my Mother coming in to check on me and wondering why I hadnt gone to sleep yet when I'd been In bed for 2-3 hours.

For about the last four years I have been extremeley bad but I dont think that my sleep problems got worse. (it is only the last month or so where I have been really trying to avoid gluten)

So I guess what I want to know is Do any of you still find it hard to get to sleep even tho u avoid gluten?

Sorry if you can't understand this very well but its like 12.30 am as I'm typing this.

[MistressIsis]

I'm constantly amazed that by reading others posts I find links to things I had no idea were related to the gluten.

For years I would pass out around 11 then wake up 3 or 4 times a night for no reason. The last couple years before eliminating gluten, my elbows & hips would be so achy I thought I had arthritis! The weird tickle in my throat that would wake me up to cough & cough & cough even though I didn;t smoke cigaretts & wasn;t sick (in fact, my ex would bring me water but do it as if my coughing was intentionally done just to irritate him)

I think I got glutened a few days ago (must be cc) and I've been having the worst time sleeping. Actually it's either cc or because the only thing I added was Cocoa Pebbles.

Just when I think I've learned everything about this, I learn more!

[Cynthia Muckelroy]

I am having a terrible time sleeping.  I saw in some pots that there is some Oct meds you can take that works great.  Does anyone know what is.  Also my doctor told me since I'm taking folic acid and B12 shots those can keep you awake.  I take them as prescribed because damaged to my small intestine is keeping me from absorbing vitamins.

[Ennis-TX]

2 hours ago, Cynthia Muckelroy said:

I am having a terrible time sleeping.  I saw in some pots that there is some Oct meds you can take that works great.  Does anyone know what is.  Also my doctor told me since I'm taking folic acid and B12 shots those can keep you awake.  I take them as prescribed because damaged to my small intestine is keeping me from absorbing vitamins.

Magnesium  is a common issue, with sleeping I found doctors Best in the powder in a warm beverage works great. I also use pumpkin seen protein to help me sleep, you take 2tsp of it in a warm glass of almond or cashew milk before bed. It helps the body with serotonin and melotonin production.      Jarrow Pumpkin Seed protein is the cheapest right now on luckyvitamin if you wan to try that you can also get the magnesium there. Look up symptoms of magnesium deficiency you might find you have several. OH for B-vitamins I use the Liquid Health Stress & Energy and their Neurological support but make sure to take it 5 hours before bed at least. The Liquid health one is caffeine free so no jittery buzz.

[knitty kitty]

Vitamin B6 (pyridoxine) can help you fall asleep.  Tryptophan is an amino acid that can help you sleep.  The body can turn tryptophan into vitamin B3 (niacin) which helps heal the intestines.  

Are you taking a B complex vitamin or a multivitamin in addition to the shots???  There are eight B vitamins that all work together.  B12 (cobalamine) needs folate (B9) to work.  (Folic acid is the synthetic form of folate.)  Folate needs B2 (riboflavin) to work with.  Riboflavin needs pyridoxine (B6).  The B-complex vitamins are water soluble, so any excess is excreted in the urine.  Since you were found deficient in B12, you may be low in some of the others as well.  The other B vitamins are tough to test for, so they usually get ignored.  

Was your Vitamin D level checked?  Low vitamin D will disrupt your sleep cycle, too.  

Alas, all doctors are not as thoroughly educated on vitamin deficiencies as we would want.  But do discuss the addition of any supplement with your doctor.  

Hope this helps!

 

 

 

 

 

[knitty kitty]

8 hours ago, Cynthia Muckelroy said:

I am having a terrible time sleeping.  I saw in some pots that there is some Oct meds you can take that works great.  Does anyone know what is.  Also my doctor told me since I'm taking folic acid and B12 shots those can keep you awake.  I take them as prescribed because damaged to my small intestine is keeping me from absorbing vitamins.

A zinc deficiency can make things taste funny.  Zinc is another mineral Celiacs might be lacking.