Crippling Exhaustion/oversleeping

[Kyalesyin]

By the look of things, most of you here are insomniacs!

My wife has the opposite problem. She doesn't do anything but sleep some days. I mean, literally, she sleeps through thunderstorms, the smoke alarm going off, our neighbours cats breeding...

Especially before she was diagnosed, she'd have four of five days at a time where we just couldn't wake her up for more than a few minutes at a time. It was only when I noticed that this was after we'd had a lot of cake/bread/similar that we wondered if it was being caused by something she was eating. Is this at all unsual? She'd also complain that she couldn't get warm and smell like death when she was like that. Since we switched diets, the problem has eased, although isn't totally gone.

Ayone else find this? How regularly does it pop up?

[eleep]

I used to fluctuate between the insomnia and the oversleeping -- actually, the insomnia came in and out for seemingly inexplicable reasons -- the need to oversleep was pretty much constant throughout the day. The absolute worst were the periods when I was insomniac at night and exhausted, stressed and snappish during the day. I would even avoid napping just so I could have better chances of getting a good night's sleep and _still_ lie awake for most of the night. The month and a half after I stopped eating gluten was actually the worst of all of this -- between withdrawal and various accidental glutenings, I don't think I did sleep through that entire stretch of time. Once my patterns evened out, it took about another month for my body to recuperate and now I'm actually quite well-rested most of the time.

eleep

[jayhawkmom]

I'm one of the ones who suffers from debilitating exhaustion and fatigue. It's getting better since going gluten-free though.

[Guhlia]

I also suffered from exhaustion. It got much better after I switched all of my body products to gluten free ones. I was using Bath and Body Works lotion before and I swear that's why I was still so tired. It has oats in it.

[Nancym]

I had this from gluten but also from dairy (casein) as well.

Also, exhaustion can be a symptom of other autoimmune diseases as well. Has she had her thyroid checked?

[Kyalesyin]

I had this from gluten but also from dairy (casein) as well.

Also, exhaustion can be a symptom of other autoimmune diseases as well. Has she had her thyroid checked?

Went the route of thyroid/diabetes/liver malfunction first, and they all gave her a clean bill of health. Current thinking is that she's still in a recovery phase, as its gradually getting better. Had dairy intolerance tested, and that came back ok, so far.

[gfp]

Hi.. me again!

First off I have to agree 100% with eleep.

but on top of this you should consider depression, its very common with gluten and gluten withdrawal especially.

If you want to know why ask and I'll explain. Indeed I can provide links and explanations to any of this but my posts tend to be long enough as it is.

Also you just moved and changed your life, got married (obviously recently) etc. etc.

All of these are extremely stressful changes... and it doesn't mean she's depressed because you moved or married or whatever but that the body can respond by depression to these triggers. If you add the gluten withdrawal then heck...

Seriously, just search for depression on the forum, its incredibly common in celiacs and withdrawal actually makes it worse.

Self help can include natural anti-depressants (St johns wort or a cocktail I get in France for abut €3 for 180 but also prescribable under the French system)

Exersize.... yeah, i know how does someone lying in bed exersize. The answer is they need someone to drag them out. Lots of Fresh air ... and some sun can work wonders (do you sail?) ... and this links with the technical reason behind the depession.

Sublingual B6 and B12.... are also recommended.

and the biggest thing in all sleep disorders is getting up at the same time everyday regardless. Can be a killer to start but then after 2-3 days it resets the clock.... if the sleep disorder is depression induced then exersize, fresh air and getting out are needed so when you get home, open a bottle of wine and a meal or whatever you will drop off. (not necassarily what newlyweds want )

No coffee after mid day.... seriously... one of the easiest fixes. This is even more true for women who process caffine much more slowly than men AND much much more slowly if pregnant.

(again of you don't believe me say so ... I don't mind)

She'd also complain that she couldn't get warm

Lots of reasons for this... but I have my own question.

Does she ever get REALLY REALLY cold.

i have had episodes a few times when I have been chilling out with my girlfriend and felt a slight chill. I go and try and close a windows, put on a shirt etc. and a slight chill goes directly into incipient hypothermia .. I mean shaking uncontrollably and crawling under a duvet (comforter for our american friends) with my girlfriend doesn't even help for 30 mins.

[Kyalesyin]

Hi.. me again!

First off I have to agree 100% with eleep.

but on top of this you should consider depression, its very common with gluten and gluten withdrawal especially.

If you want to know why ask and I'll explain. Indeed I can provide links and explanations to any of this but my posts tend to be long enough as it is.

Also you just moved and changed your life, got married (obviously recently) etc. etc.

All of these are extremely stressful changes... and it doesn't mean she's depressed because you moved or married or whatever but that the body can respond by depression to these triggers. If you add the gluten withdrawal then heck...

Seriously, just search for depression on the forum, its incredibly common in celiacs and withdrawal actually makes it worse.

Self help can include natural anti-depressants (St johns wort or a cocktail I get in France for abut €3 for 180 but also prescribable under the French system)

Exersize.... yeah, i know how does someone lying in bed exersize. The answer is they need someone to drag them out. Lots of Fresh air ... and some sun can work wonders (do you sail?) ... and this links with the technical reason behind the depession.

Sublingual B6 and B12.... are also recommended.

and the biggest thing in all sleep disorders is getting up at the same time everyday regardless. Can be a killer to start but then after 2-3 days it resets the clock.... if the sleep disorder is depression induced then exersize, fresh air and getting out are needed so when you get home, open a bottle of wine and a meal or whatever you will drop off. (not necassarily what newlyweds want )

No coffee after mid day.... seriously... one of the easiest fixes. This is even more true for women who process caffine much more slowly than men AND much much more slowly if pregnant.

(again of you don't believe me say so ... I don't mind)

Lots of reasons for this... but I have my own question.

Does she ever get REALLY REALLY cold.

i have had episodes a few times when I have been chilling out with my girlfriend and felt a slight chill. I go and try and close a windows, put on a shirt etc. and a slight chill goes directly into incipient hypothermia .. I mean shaking uncontrollably and crawling under a duvet (comforter for our american friends) with my girlfriend doesn't even help for 30 mins.

Trust me bub, you're making sense.

She had depression a lot during her teens, although that was mostly situational and mostly picked up when we moved. I did figure there would be some depression involved when she was diagnosed. Kinda feel like a bad partenr for admitting that fact that I go to peices when she's depressed.

Caffeine isn't an issue. I can't even go near it, so neitherof us drink it. She was a hyperactive kid despite being ill a lot, so she's always avoided caffeine/food colourings/etc anyhow.

She reacted badly to the anitdepressants when she tried them. They actually made her worse, and when they changed the pills it was like watching a junkie go through withdrawl. I actually called an ambulance for her twice when she was coming off the pills at various times. We're trying the fresh air/frsh fruit way of doing things. We're right on dartmoor, so there have been plenty of long walks.

And in answer to your question about how someone lying around in bed gets their excersise? Wouldn't you like to know?

You're spot on about the cold thing. She'd be wearing fifteen laters, have the heating right up and be cuddled up to a radiator wrapped in a quilt and still cry that she was cold. What the hell is with that? Cake was what set that off. Bread wasn't so bad, but anything sugary- cake, doughnuts, cookies, really set her off.

[gfp]

Trust me bub, you're making sense.

She had depression a lot during her teens, although that was mostly situational and mostly picked up when we moved. I did figure there would be some depression involved when she was diagnosed. Kinda feel like a bad partenr for admitting that fact that I go to peices when she's depressed.

Caffeine isn't an issue. I can't even go near it, so neitherof us drink it. She was a hyperactive kid despite being ill a lot, so she's always avoided caffeine/food colourings/etc anyhow.

She reacted badly to the anitdepressants when she tried them. They actually made her worse, and when they changed the pills it was like watching a junkie go through withdrawl. I actually called an ambulance for her twice when she was coming off the pills at various times. We're trying the fresh air/frsh fruit way of doing things. We're right on dartmoor, so there have been plenty of long walks.

If she was on any psychoctropics then I'm not surprised. Omneparazole has recently been pulled off the UK list for under 18's but also has been shown to have a very worrying suicide risk in non suicidal patients. All psychoctropics are IMHO very dangerous outside of direct medical supervision and they are given out like candy.

The way they work is intrinsically dangerous... there are safer ones but non of them is really safe.

For all you read on St Johns Wort (good and bad) its cheap and it seems pretty good for most.

I get some stuff here for almost nothing which is called Euphytose. if you search the ingredients are in French and so Ill translate, you won't get them in a mini dictionary!

Hawthorne extract 10mg, passion flower 40mg, valerian 50mg and Black Horehound (seriously its called that scientific name is Ballota nigra

And in answer to your question about how someone lying around in bed gets their excersise? Wouldn't you like to know?

Non of my business but I hope stopping the meds has allowed her to release endorphins ... which i hope you both appreciate!

You're spot on about the cold thing. She'd be wearing fifteen laters, have the heating right up and be cuddled up to a radiator wrapped in a quilt and still cry that she was cold. What the hell is with that? Cake was what set that off. Bread wasn't so bad, but anything sugary- cake, doughnuts, cookies, really set her off.

I wish I knew....

[Kyalesyin]

If she was on any psychoctropics then I'm not surprised. Omneparazole has recently been pulled off the UK list for under 18's but also has been shown to have a very worrying suicide risk in non suicidal patients. All psychoctropics are IMHO very dangerous outside of direct medical supervision and they are given out like candy.

The way they work is intrinsically dangerous... there are safer ones but non of them is really safe.

For all you read on St Johns Wort (good and bad) its cheap and it seems pretty good for most.

I get some stuff here for almost nothing which is called Euphytose. if you search the ingredients are in French and so Ill translate, you won't get them in a mini dictionary!

Hawthorne extract 10mg, passion flower 40mg, valerian 50mg and Black Horehound (seriously its called that scientific name is Ballota nigra

Non of my business but I hope stopping the meds has allowed her to release endorphins ... which i hope you both appreciate!

I wish I knew....

One of the local heath food shops makes a St. Johns Wort tea which has come highly recomended by the guy who runs the shop across the road. His wife gets SAD quite badly, and apparently she swears by it.

The Euphytose sounds very similar to a tea my mother used to brew. I may ask her it its the same thing, and if it is get her to send some down to me. I'll have to shake the arsenic out, but it'll be worth it.

If not, I'll definately look into the pills. I start college soon, and I may well need something to help with the study! Other than alcohol, I mean.

[Mayflowers]

If your wife is cold all the time sounds like thyroid. That's one of the symptoms of low thyroid.

She should get it checked by doctor. Other symptoms are fatigue, hair loss, cold hands and feet, dry skin, dry hair, loss of eyebrows, depression, irrtability.

I thought my symptoms were thyroid but it came back negative. A lot of the symptoms are same as celiac.

[elye]

Yep, I agree with Mayflowers...I was constantly tired AND freezing cold until I was diagnosed with hypothyroid. I'm on synthroid, and I've never looked back!

[fairydust]

I used to be exhausted all the time. It's been 8 months since I've gone gluten free and in the last few months the exhaustion hasn't been as bad. I used to not be able to get through the day. Now most days I'm ok...

[rumbles]

Please don't rule out other possibilities, as there are many. About nine years ago, I was exhausted to the point that I literally couldn't get out of bed, and suffered terribly from Raynauds (cold extremities, often with hands and/or feet turning pure white or varying shades of blue/purple), my Rheumatologist sent me to an infectious disease specialist, who said it couldn't be, but tested me anyway for a mycoplasma fermentans infection, - the tests came back positive. It took a couple of years of treatment (usually treatment is up to six months, but I guess I'm a little slow!) to get rid of the infection (blood work finally came back negative, but symptoms remained/fluctuated, then increased when antibiotics were ceased, - therapy was restarted and eventually all symptoms disappeared, and have not returned - it's been over three years). On my final visit to the infectious disease specialist, he mentioned that if the symptoms ever came back, that I might want to try taking gluten out of my diet, as it seemed to him that people that had the m.fermentans infection tended to have problems with gluten. That was before I found out about my gluten problems.

[acousticmom]

You're spot on about the cold thing. She'd be wearing fifteen laters, have the heating right up and be cuddled up to a radiator wrapped in a quilt and still cry that she was cold. What the hell is with that? Cake was what set that off. Bread wasn't so bad, but anything sugary- cake, doughnuts, cookies, really set her off.

For a couple of years before going gluten-free I slept every afternoon, was chilled to the bone (especially when I was most tired), weak, and always felt like I was coming down with the flu. Naps helped, but nothing really made it go away. When I went gluten-free it helped my other symptoms, but I still got that extreme tiredness many days and couldn't work. Finally I started an elimination diet this summer, and although I aborted the diet after a couple of months (long story), it was long enough to find out that eggs and sugar cause those symptoms for me. Since cutting those out in addition to gluten and dairy, I feel great. The horrible tiredness is completely gone.

I'd strongly recommend looking into food intolerances, but only after you've ruled out other possible medical causes. If you can't get solid guidance from your doctor on how to do the elimination diet, read up on the protocols so you make the effort worthwhile. Brostoff and Joneja are two good authors on the subject. I hope you can figure it out--it's awful to feel that way.

Carol

[Compassion]

That was what made me truly go forward with fniding out what was really wrong. Before I went Gluten-free I would work my regular work week, but I wasl always be so tired, and the past six months I would take 3-5 hour naps on the weekend in addition to sleeping 10 hours or more Friday and Sat night. Like others have mentioned, I would also be so tired during the day, but then at night couldn't fall asleep. It was really beginning to affect my work, and my ability to get there on time. And even when I was there the brain fog was beginning to get really bad.

The first weekend after going gluten-free I was up at 9 am and ready for the day. I couldn't believe it... and as I have been slowly healing, glutening myself indvertantly in the process sometimes, but slowly moving back towards health there have even been days that I have been alert at 6:30 am... my friends and family that truly know me were SHOCKED... that NEVER happens, I am notorious for hating mornings... but it was always because they literally hurt... of course it isn't every day that I am alert and chipper, but just the knowledge that a. this is how "normal" people feel and b. this could be me is fabulous!

Compassion

That was what made me truly go forward with finding out what was really wrong. Before I went Gluten-free I would work my regular work week, but I wasl always be so tired, and the past six months I would take 3-5 hour naps on the weekend in addition to sleeping 10 hours or more Friday and Sat night. Like others have mentioned, I would also be so tired during the day, but then at night couldn't fall asleep. It was really beginning to affect my work, and my ability to get there on time. And even when I was there the brain fog was beginning to get really bad.

The first weekend after going gluten-free I was up at 9 am and ready for the day. I couldn't believe it... and as I have been slowly healing, glutening myself indvertantly in the process sometimes, but slowly moving back towards health there have even been days that I have been alert at 6:30 am... my friends and family that truly know me were SHOCKED... that NEVER happens, I am notorious for hating mornings... but it was always because they literally hurt... of course it isn't every day that I am alert and chipper, but just the knowledge that a. this is how "normal" people feel and b. this could be me is fabulous!

Compassion

[Dangerkitten]

Be careful about using St Johns Wort with depression..some people react badly. I used SAM-e with great success. It not only helps me with that exhaustion type sleep, but also with pain from Fibromyalgia. When I stop taking it for a while, I feel my mood slip and start sleeping alot more. Chronic arthritic pain is the cause of my reactive depressive bouts. I have numerous auto immune diseases. When i start feeling like I want to cry for no reason, I realize it's time to start taking SAM-e again. Also helps after an accidental glutening. It helps the body to produce more substance P in the spine..which helps in seratonin production.

[marciab]

For the last 16 years I have spent many days falling asleep off and on all day long and then sleeping like a log at nite too. I had to stay at home when I was like this because I just couldn't function.

My doctor just considered it a normal part of chronic fatigue syndrome and told me to rest because my body needed it. Wrong !!!!

I figured out with my last wheat challenge that it was wheat making me do this. I've probably had 2 days of napping in the last 6 months.

Good luck with this ... marcia

[pat p.]

Hi everyone, I am new to this post. I have not been officially diagnosed a celiac but my enterolab results show a celiac gene and a gluten intolerance gene (DQ2,1 subtype 2,5) and positive fecal fat. I also have a malabsorption issue going on and have lost about 25 lbs in the past year. I too suffer from extreme fatigue but I also have chronic Epstein Barr Virus. You may want to consider being tested for this virus but, unfortunately there is no cure for this. It is triggered by stress so that combined with gluten can cause ongoing problems with your energy level. I take a magnesium supplement, Bovine colostrum, Sun chlorella and I just ordered some creatine My energy levels have improved slightly but as soon as I get stressed I want to crawl into my bed and sleep. I know it's easier said than done but try to alleviate some of the stress in your life.

[marciab]

It's been awhile (3 years ?) since anyone ran EBV titers on me, but mine were off the charts too. I was told that a normal person's immune system would indicate a 100 ? reaction to EBV, but mine was 7 X that at 700 ... Not sure what all this means, since I really can't understand medical jargon ...

I was also tested for cytomeglia and the herpes virus. These tests have been run on me several times over the years though. And each time my titers were elevated.

I still don't have a lot of energy, but I never nap during the day anymore. And I sleep good at nite too. Other than the ##@#$% hot flashes.

My sleeping problem was definitely wheat ...

My fatigue could still be gluten or other food intolerances. I'm still making cc mistakes ... I licked an envelope last week ..

Marcia

[super-sally888]

Hi,

Just another word on thyroid. It is possible to be hypothyroid, even if the test results come back 'normal' - particularly early on. You need to find a dr. that would look at the whole picture, not just blood test results. They also need to test antibodies, FT3 and FT4, not just TSH. I had every symptom in the book for hypo (depression, fatigue, cold all the time - in a tropical climate) but blood tests were normal. My dr. agreed to trial low dose of thyroid meds (this is safe under supervision) and now 6 years later I am on complete replacement. Thryoid problems cause depression as well.

Also make sure other stuff like lymes, etc. are fuled out.

Hope you guys get on top of this. Life is so sweet when one get these things managed.

Sally

[kbtoyssni]

I definitely had this problem before I was diagnosed. I was actually diagnosed with chronic fatigue at one point because I just couldn't get enough sleep. I could never figure out how people managed to work 40 hour weeks - I'd be too exhausted to think by 2pm. I've now been gluten-free for 15 months and the fatigue is gone. When I get glutened it returns, but I have trouble falling asleep so the insomnia/fatigue combo is a killer.

I wish I knew what to tell you. Since she's gluten-free, there must be something else going on. Has she ever been tested for mono? Not that there's much you can do for mono. Hmmm. Sorry I can't be of more help. Good luck figuring this out.

[georgie]

I licked an envelope last week

Does the gum have Gluten ??

Just another word on thyroid. It is possible to be hypothyroid, even if the test results come back 'normal' - particularly early on. You need to find a dr. that would look at the whole picture, not just blood test results. They also need to test antibodies, FT3 and FT4, not just TSH.

I can second this. Make sure Thyroid Antibodies are tested. You can have a normal TSH and Antibodies which means you have an autoimmune disease type of low Thyroid. Many cases of 'CFS' are in fact undx low Thyroid. You have to find a Dr that understands Thyroid and Endos have the reputation for being about the worst.

[marciab]

I found this on the celiac.com board about unexpected sources of gluten ...

https://www.celiac.com/st_prod.html?p_prodi...-23105623274.5f

Hope this works, I'm not good at the technical stuff.

Marcia

[syrceliac]

Hi, I also struggle with sleeping too much. However, I have been feeling better since my doc ID'd a Vitamin D deficiency. B/C celiac causes malabsorption, I don't get all the vitamins I need so I have to take higher doses. It's worth exploring b/c it can also contribute to osteoporosis, so maybe she might want to get checked...doc's don't always look for it. Good Luck