Diarrhea In The Middle Of The Night?

[LisaaaNoel]

Anyone experience having to get up in the middle of the night to go to the bathroom before going gluten-free?

I've experienced this 2 nights now. (Each night I only went once, but still)

[Jennyroars]

Before I even knew about celiac I would wake up in the middle of the night with an awful feeling of anxiety and then have to run to the bathroom and have awful D, sometimes I would be sick too. I was sure that there was something terribly wrong with me, but once my whole body was empty I felt alot better. Initially I thought I was having panic attacks in my sleep and my GP thought the same so game me anti depressants (which I never took) but after seeing a gastric consultant I am not so sure. I have been gluten free fir nearly 2 weeks now and I feel a lot better the episodes on the middle of the night have subsided and I get my bloods and biopsy results back next week. Are you sure you are not glutening yourself by accident? Or perhaps just having too much too late at night? As I think that was also an issue for me.

[dilettantesteph]

It would start as early as 2 a.m. and continue every hour until mid morning. I am so grateful for my diagnosis!

[Gemini]

Anyone experience having to get up in the middle of the night to go to the bathroom before going gluten-free?

I've experienced this 2 nights now. (Each night I only went once, but still)

Actually, this is the biggest clue which points towards Celiac Disease and it's called nocturnal diarrhea. It's more common to have diarrhea in the middle of the night for a Celiac because it's the result of ingesting gluten all day. It takes time for the autoimmune response to kick in and actually cause diarrhea..that doesn't happen right away. Then, what happens, is you tend to get diarrhea just at night because it's so severe, it empties you out completely.

I didn't have a problem until about 11:00 at night. Then I was up half the night having the most severe diarrhea I think anyone ever had. Every morning I got up 1 pound lighter. I was so empty, it would take eating food all day for it to happen again! It was freakin' horrible and after losing 8 pounds in 5 days, I thought it had to be something besides food poisoning! When things get that bad, it will wake you up from a sound sleep!

[amberlynn]

Actually, this is the biggest clue which points towards Celiac Disease and it's called nocturnal diarrhea. It's more common to have diarrhea in the middle of the night for a Celiac because it's the result of ingesting gluten all day. It takes time for the autoimmune response to kick in and actually cause diarrhea..that doesn't happen right away. Then, what happens, is you tend to get diarrhea just at night because it's so severe, it empties you out completely.

I didn't have a problem until about 11:00 at night. Then I was up half the night having the most severe diarrhea I think anyone ever had. Every morning I got up 1 pound lighter. I was so empty, it would take eating food all day for it to happen again! It was freakin' horrible and after losing 8 pounds in 5 days, I thought it had to be something besides food poisoning! When things get that bad, it will wake you up from a sound sleep!

Seriously??

I went through this for YEARS... it stopped when I first went gluten-free with my older son and has only happened once since. And it wouldn't be every night, just random nights (when I probably stuffed myself with gluten, throught the day, lol!). I remember when he was an infant, and screaming and I Couldn't leave the bathroom . It was every hour on the hour. Usually not a consecutive nights though, thankfully!

[Gemini]

Seriously??

I went through this for YEARS... it stopped when I first went gluten-free with my older son and has only happened once since. And it wouldn't be every night, just random nights (when I probably stuffed myself with gluten, throught the day, lol!). I remember when he was an infant, and screaming and I Couldn't leave the bathroom . It was every hour on the hour. Usually not a consecutive nights though, thankfully!

Yup, seriously! To show you the differences between how people are affected by this, I was almost a gonner from Celiac by the time I was diagnosed. Yet....I never had diarrhea until a few months before diagnosis and it didn't become daily and life-threatening until the week I was actually diagnosed. I had pale, large volume stool for years, which floated from all the fat it contained from mal-absorption.

Then the Big D set in and it was only at night. All night long until there was nothing left in me. You'd think I was prepping for a colonoscopy! Then, I started reading about Celiac and from what I gathered from the medical profession, they said this was how it usually works in full blown Celiac.....night time diarrhea. If you find this happening, you've probably ingested gluten somewhere.

[CMCM]

Oh yes, me too....always the middle of the night. This went on sporadically for years and years! Of course, when I stopped eating gluten, this stopped as well!

[amberlynn]

Wow, I can remember being in Jr. High and having the big D in the middle of the night. All through HS, etc.

Embarrasingly enough, at one point in college after I had mono (really bad, lost 40 lbs in 2 months!), and would constantly be running to the bathroom and even once I didn't even make it. No warning or nothing. So humiliating - but I was alone at work thankfully. I had no idea that that wasn't normal though. I mean, I knew that having an accident wasn't normal, but the diarrhea, I thought it was... .

[dilettantesteph]

That not making it to the bathroom was happening to me for about 10 years until I finally got diagnosed. My idiot GP said that it was consistent with irritable bowel syndrome. Once it happened when I was volunteering at my son's school. Humiliating and embarrassing is right!

[kayo]

I'm experiencing this as well and always attributed the attack to dairy but now I think it's gluten related.

I've been gluten free since the summer and have had these attacks a few times, most recently twice in the last 3 weeks. The pain wakes me out of a sound sleep around 2 am. It's sharp and located in the center of my abdomen just above my belly button. My stomach is bloated and extended and hard as a rock. Then there's a rumbling and gurgling lower in my abdomen and that's when I know it's about to begin.

I get hot and sweaty from head to toe. Then the nausea comes. I run back and forth from the bathroom to the bedroom for at least an hour by the time the whole incident is over. At first I have a very difficult bowel movement that is incredibly painful but seems necessary as my body seems to want to eject the entire contents of my GI tract and nothing is going to stop it. I have actually fainted on the toilet during this as the pain is so severe and I'm so weak from experience. Then I get super weak and cold and have to lay down only to have to rush back to the bathroom moments later. At some point the big D will start and this is when the sharp pain finally begins to subside a bit. Often I will have big D and throwing up at the same time. Eventually it seems the big D changes to passing liquid. That's when I know it will be over soon. Then the pain turns to a gnawing ache that is more uncomfortable than painful. I go to bed and get some rest. Pepto seems to help with the pain a bit.

The next day I feel like someone very big and strong punched me in the gut. Often my RA will flare up as well and I'm useless. I lose a whole day or more after one of these incidents. I'm recovering from one now. I think I got glutened on Christmas likely due to cross contamination at a relatives house. I didn't eat any dairy or gluten or soy but clearly I ingested something.

These attacks scare me so much I'm afraid to eat and afraid to sleep. I stayed up til 2 am last night just to make sure it wasn't going to happen again.

[Gemini]

I'm experiencing this as well and always attributed the attack to dairy but now I think it's gluten related.

I've been gluten free since the summer and have had these attacks a few times, most recently twice in the last 3 weeks. The pain wakes me out of a sound sleep around 2 am. It's sharp and located in the center of my abdomen just above my belly button. My stomach is bloated and extended and hard as a rock. Then there's a rumbling and gurgling lower in my abdomen and that's when I know it's about to begin.

I get hot and sweaty from head to toe. Then the nausea comes. I run back and forth from the bathroom to the bedroom for at least an hour by the time the whole incident is over. At first I have a very difficult bowel movement that is incredibly painful but seems necessary as my body seems to want to eject the entire contents of my GI tract and nothing is going to stop it. I have actually fainted on the toilet during this as the pain is so severe and I'm so weak from experience. Then I get super weak and cold and have to lay down only to have to rush back to the bathroom moments later. At some point the big D will start and this is when the sharp pain finally begins to subside a bit. Often I will have big D and throwing up at the same time. Eventually it seems the big D changes to passing liquid. That's when I know it will be over soon. Then the pain turns to a gnawing ache that is more uncomfortable than painful. I go to bed and get some rest. Pepto seems to help with the pain a bit.

The next day I feel like someone very big and strong punched me in the gut. Often my RA will flare up as well and I'm useless. I lose a whole day or more after one of these incidents. I'm recovering from one now. I think I got glutened on Christmas likely due to cross contamination at a relatives house. I didn't eat any dairy or gluten or soy but clearly I ingested something.

These attacks scare me so much I'm afraid to eat and afraid to sleep. I stayed up til 2 am last night just to make sure it wasn't going to happen again.

Your experience mirrors what I have had....including the point where I almost passed out. It knocks the wind and strength right out of you.

I would guess that because you are new to this, you probably ingested gluten somewhere. Relax, because it will happen on occasion, even if you are diligent about things. It happened to me for the first time in almost 5 years and it was because, I believe, I made a sandwich for my husband with wheat bread and for the first time in that many years, FORGOT to wash my hands afterwards. I can't beleive I slipped up like that but it happens. Later that night, the pain, sweating, almost passing out and all the rest happened. It still completely amazes me that such a small hit could produce such violent results! I know I did not eat anything food based I normally eat that may have contained anything bad so it must have been from that incident. Luckily, within a day and a half, I was back to normal. Not going to do that again!

[drained]

I'm experiencing this as well and always attributed the attack to dairy but now I think it's gluten related.

I've been gluten free since the summer and have had these attacks a few times, most recently twice in the last 3 weeks. The pain wakes me out of a sound sleep around 2 am. It's sharp and located in the center of my abdomen just above my belly button. My stomach is bloated and extended and hard as a rock. Then there's a rumbling and gurgling lower in my abdomen and that's when I know it's about to begin.

I get hot and sweaty from head to toe. Then the nausea comes. I run back and forth from the bathroom to the bedroom for at least an hour by the time the whole incident is over. At first I have a very difficult bowel movement that is incredibly painful but seems necessary as my body seems to want to eject the entire contents of my GI tract and nothing is going to stop it. I have actually fainted on the toilet during this as the pain is so severe and I'm so weak from experience. Then I get super weak and cold and have to lay down only to have to rush back to the bathroom moments later. At some point the big D will start and this is when the sharp pain finally begins to subside a bit. Often I will have big D and throwing up at the same time. Eventually it seems the big D changes to passing liquid. That's when I know it will be over soon. Then the pain turns to a gnawing ache that is more uncomfortable than painful. I go to bed and get some rest. Pepto seems to help with the pain a bit.

The next day I feel like someone very big and strong punched me in the gut. Often my RA will flare up as well and I'm useless. I lose a whole day or more after one of these incidents. I'm recovering from one now. I think I got glutened on Christmas likely due to cross contamination at a relatives house. I didn't eat any dairy or gluten or soy but clearly I ingested something.

These attacks scare me so much I'm afraid to eat and afraid to sleep. I stayed up til 2 am last night just to make sure it wasn't going to happen again.

I identify with 100% of the above, except for 2 things: Sporadically, and i eat bread several times a week..never have a problem from it. oh, hirdly, i dont get nausea but a major major lighteadhnss like there is zero bloon in my head ..and the sweating is amazing. of course, can't sit up straigh when taking care of this..so am leaned over...and talking myself through it: "fight..stay awake..don't pass out..count to 3...then do it again...breathe ..make noise..stay conscious". This happens to me only sporadicaly...maybe once every 6-7 months....maybe even longer like 10-11 months: about 2-3 a.m., i'll be sound asleep ..then a small sensation in gut,.sense of something moving through intestines/colon whatever . including the internal gurgling...til the sensation levels in mid gut near belly button. can't describe it as a cramp though..just a sesnation of sorts but that's where it's centered. I know what's about to happen..so i get to the restroom just before it starts. but then the sweatss starts...and i deliberately make a bit of noise when exhaling...but it dounds like a moan...but it seems to help for reason...no idea why. but it does i don't even bother going back to bed. I'm actuallya very healthy adult male otherwise..I know it's not going to go away in 5 minutes, so it's easier to lay down almost fetally on the bathroom floor rather than even attempt to stand as standing will make me even more lightheaded: I'm 100% out of energy, zero strenght...and just thinking to myself "wtf is this all about i feel like im dying here!" and fa,mily is thnking im just whining. Tried to explain to dr 2-3 years ago...but ...went nowhere with it.

my diet is okay...but i do eat breads..wheat breads someitmes...but honestly have foudn myself at a loss now..i identify with the symptoms in the thread,...except that mine happens only sporadically...but when it does..holy cr*p...it's nasty as everyne else has described. However, today...id have no problem making a chicek sandwish right now on any kind of bread. i eve neat bagels ..maybe 1 every other week...but I never had any idea this bread stuff cold actually be causing this?

but if its the bread..the nwhy this happen only sporadically ? thoughts? thanks.

[luvs2eat]

I went thru the nighttime diarrhea too. After going gluten-free, it went away. It returned recently, and I've come to the sad conclusion that it's dairy causing it this time. I'm finding going dairy free more difficult that going gluten-free was!!

[luvs2eat]

I identify with 100% of the above, except for 2 things: Sporadically, and i eat bread several times a week..never have a problem from it. oh, hirdly, i dont get nausea but a major major lighteadhnss like there is zero bloon in my head ..and the sweating is amazing. of course, can't sit up straigh when taking care of this..so am leaned over...and talking myself through it: "fight..stay awake..don't pass out..count to 3...then do it again...breathe ..make noise..stay conscious". This happens to me only sporadicaly...maybe once every 6-7 months....maybe even longer like 10-11 months: about 2-3 a.m., i'll be sound asleep ..then a small sensation in gut,.sense of something moving through intestines/colon whatever . including the internal gurgling...til the sensation levels in mid gut near belly button. can't describe it as a cramp though..just a sesnation of sorts but that's where it's centered. I know what's about to happen..so i get to the restroom just before it starts. but then the sweatss starts...and i deliberately make a bit of noise when exhaling...but it dounds like a moan...but it seems to help for reason...no idea why. but it does i don't even bother going back to bed. I'm actuallya very healthy adult male otherwise..I know it's not going to go away in 5 minutes, so it's easier to lay down almost fetally on the bathroom floor rather than even attempt to stand as standing will make me even more lightheaded: I'm 100% out of energy, zero strenght...and just thinking to myself "wtf is this all about i feel like im dying here!" and fa,mily is thnking im just whining. Tried to explain to dr 2-3 years ago...but ...went nowhere with it.

my diet is okay...but i do eat breads..wheat breads someitmes...but honestly have foudn myself at a loss now..i identify with the symptoms in the thread,...except that mine happens only sporadically...but when it does..holy cr*p...it's nasty as everyne else has described. However, today...id have no problem making a chicek sandwish right now on any kind of bread. i eve neat bagels ..maybe 1 every other week...but I never had any idea this bread stuff cold actually be causing this?

but if its the bread..the nwhy this happen only sporadically ? thoughts? thanks.

Thoughts??? You're damaging your small intestine every time you eat even a tiny piece of bread!! Are your experiences related to eating bread even occasionally? I'd think SO!! Bread seems to be one of the easiest things to replace anymore... even gluten free bagels are good... so do yourself a favor!!!

[Gemini]

I identify with 100% of the above, except for 2 things: Sporadically, and i eat bread several times a week..never have a problem from it. oh, hirdly, i dont get nausea but a major major lighteadhnss like there is zero bloon in my head ..and the sweating is amazing. of course, can't sit up straigh when taking care of this..so am leaned over...and talking myself through it: "fight..stay awake..don't pass out..count to 3...then do it again...breathe ..make noise..stay conscious". This happens to me only sporadicaly...maybe once every 6-7 months....maybe even longer like 10-11 months: about 2-3 a.m., i'll be sound asleep ..then a small sensation in gut,.sense of something moving through intestines/colon whatever . including the internal gurgling...til the sensation levels in mid gut near belly button. can't describe it as a cramp though..just a sesnation of sorts but that's where it's centered. I know what's about to happen..so i get to the restroom just before it starts. but then the sweatss starts...and i deliberately make a bit of noise when exhaling...but it dounds like a moan...but it seems to help for reason...no idea why. but it does i don't even bother going back to bed. I'm actuallya very healthy adult male otherwise..I know it's not going to go away in 5 minutes, so it's easier to lay down almost fetally on the bathroom floor rather than even attempt to stand as standing will make me even more lightheaded: I'm 100% out of energy, zero strenght...and just thinking to myself "wtf is this all about i feel like im dying here!" and fa,mily is thnking im just whining. Tried to explain to dr 2-3 years ago...but ...went nowhere with it.

my diet is okay...but i do eat breads..wheat breads someitmes...but honestly have foudn myself at a loss now..i identify with the symptoms in the thread,...except that mine happens only sporadically...but when it does..holy cr*p...it's nasty as everyne else has described. However, today...id have no problem making a chicek sandwish right now on any kind of bread. i eve neat bagels ..maybe 1 every other week...but I never had any idea this bread stuff cold actually be causing this?

but if its the bread..the nwhy this happen only sporadically ? thoughts? thanks.

If you get sick from eating bread or suspect you have a gluten problem, then get yourself tested or do a dietary trial. If you keep ingesting gluten, you'll end up sicker than you'll ever want to be. Many people have sporadic symptoms...I did. I could eat wheat sometimes and not others. This is partly why I never connected wheat to my being ill until I got so bad I was headed for a feeding tube. Trust me, you do not want to be that sick!

Celiac Disease is an autoimmune disease so symptoms can be fluky and can change. I would see a doctor if I were you!

[Marz]

Sigh, have had this on and off the past month. Usually around 3AM and lasting around 30 min for tummy to be happy again. Heh, can't be normal... I swear if my GI tells me it's IBS after negative biopsy I might be tempted to deck him.

[treehouse3518]

I am waiting to see a doc in a couple days to schedule a biopsy. I have had D at night that I've had to get up for, or if I can, I just hold it. However, I must have been in a deep sleep early this a.m., and low and behold, I D'ed myself in bed! What an awful mess to deal with at 5 a.m.! I thought I was going to throw up just from the mess and awful smell! I went gluten-free 10 days ago and am still waiting/hoping for the D to stop. Anybody have any idea when I might get some relief? I am being so religious about it ...

[Flasaltwater]

I am waiting to see a doc in a couple days to schedule a biopsy. I have had D at night that I've had to get up for, or if I can, I just hold it. However, I must have been in a deep sleep early this a.m., and low and behold, I D'ed myself in bed! What an awful mess to deal with at 5 a.m.! I thought I was going to throw up just from the mess and awful smell! I went gluten-free 10 days ago and am still waiting/hoping for the D to stop. Anybody have any idea when I might get some relief? I am being so religious about it ...

I have had this for years, usually started after dinner or later and would go all night long. I am still going a couple of times at night but now I am going in the day as well I have been Gluten free I think anyway for the last 3 weeks before I went Gluten free it was almost always at night unless I messed myself up good then its around the clock. I stopped sleeping in the bed with my husband because it would wake him up no sense in both of us loosing sleep. I have messed myself on occasion scares me to death very embarrassing if in public like work for instance. I'm to old to be poopin my pants

I made a joke about it and told my husband I couldn't go out unless I strapped the toilet to my butt, I said the other word though.

No sexy panties in my draw not till I get this under control. I've had to throw to many pairs away.

I'm a seasoned pro at nocturnal diarrhea.

[ravenwoodglass]

Just a quick note. If you are having nocturnal D that is a clear sign you have celiac according to my GI. IBS doesn't do that. Too bad my doctor didn't listen when I told him that was happening prediagnosis. It wasn't until a return visit after diagnosis that he really listened and said 'Gee I didn't know that was happening' I actually told him more than once he just didn't listen.

[dilettantesteph]

My idiot doctor told me that it was IBS. I had it for almost 15 years before diagnosis after my son's pediatrician suggested it. It happened in the night and in the day. Sometimes I would have to get up every hour or two all night. It makes it impossible to hold a job. The only way to clean up would be to change my bottom half of clothes and take a shower. It was so liquid that it would run down my pant legs etc.

I am a super sensitive celiac and had to get off processed foods before it went away completely.

[Flasaltwater]

" My idiot doctor told me that it was IBS. I had it for almost 15 years before diagnosis after my son's pediatrician suggested it. It happened in the night and in the day. Sometimes I would have to get up every hour or two all night. It makes it impossible to hold a job. The only way to clean up would be to change my bottom half of clothes and take a shower. It was so liquid that it would run down my pant legs etc.

I am a super sensitive celiac and had to get off processed foods before it went away completely"

R

[shadowicewolf]

Mine was always in the afternoon or evening (though sometimes at night). Delayed reaction perhaps?

[ravenwoodglass]

" My idiot doctor told me that it was IBS. I had it for almost 15 years before diagnosis after my son's pediatrician suggested it. It happened in the night and in the day. Sometimes I would have to get up every hour or two all night. It makes it impossible to hold a job. The only way to clean up would be to change my bottom half of clothes and take a shower. It was so liquid that it would run down my pant legs etc.

I am a super sensitive celiac and had to get off processed foods before it went away completely"

R

[Nen]

Wow, I had no idea that this was a sign of Celiac. I get these night episodes every so often where I have to keep running to the restroom, and my guts are in agony. I always thought it was just some IBS stuff. The next day I feel almost hung over, and usually just won't eat much after one of these night episodes. Interesting.

[ConfusedTummyinDC]

Just a quick note. If you are having nocturnal D that is a clear sign you have celiac according to my GI. IBS doesn't do that. Too bad my doctor didn't listen when I told him that was happening prediagnosis. It wasn't until a return visit after diagnosis that he really listened and said 'Gee I didn't know that was happening' I actually told him more than once he just didn't listen.

 

It is bittersweet that I just found this forum and this topic. Today, I was told that my blood results for celiac came back negative and in my searching for some other answer I finally discovered this thread, which explains EXACTLY what happens to me. How often do celiac blood tests give a false negative, anyone know?

 

The reason I went to a gastro last week was due to some severe bloating in my lower abdomen but without the presence of gas-like symptoms like burping or flatulence. It felt more like tissue or organ swelling and has slowly subsided since but hasn't gone away. While at the gastro I explained what happens to me sometimes at night, which I think is why he did the celiac test.

 

For the past 4-5 years I've have sporadic night "episodes" that I was contributing to lactose. They could come twice a week or once a month. It seemed random to me since sometimes I would have lactose and be just fine or I would have lactose with a lactaid pill and not be fine, which always confused me. Basically, at 3 am I am woken up by severe pains in my stomach, it takes a few minutes but first comes hard stool (what I always imagine is the meal I had just before having lactose), then a lull, and then a massive about of D - all while sweating, shaking, feeling incredibly faint, and just overall complete misery. Sometimes I need another trip to the bathroom before I am completely and I mean COMPLETELY empty. It feels like I am losing 10 pounds when this happens. My stomach feels empty and delicate when I wake up in the morning and I usually don't eat anything right away for fear it will upset me. One thing I've noticed is that the D is of a certain texture and color that I only get when having these episodes. It sinks to the bottom of the toilet and doesn't mix with the water until I flush. It also always has an orange color to it. This has never happened during the day but once or twice it has happened in the early morning after I've started getting ready for work. 

 

Since visiting the gastro, I've been lactose-free, gluten-free, and low fodmap (an IBS diet from the doc) but I had one of these massive episodes on day 3. I don't think I've ever had an episode before without at least having some amount of lactose that day. Sometimes the amount of lactose is as small what might be in something that says "traces of milk, tree nuts, etc. may be present" but every episode has come after something that I can tag it to, until now. I've read that gluten doesn't leave your system super quickly so if I had celiac that might explain it but with negative test results I am all sorts of confused. 

 

The doc also ignored my bloating issue - the thing that scared me enough to visit him in the first place. He said it was just gas but I've had gas before and it felt different. Plus, the OTC gas meds he told me to try did nothing. This feels like tissue swelling. Does celiac result in swelling in the lower abdomen?