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Does anyone have this problem? I don't know if my body is getting rid of toxins or what.
Seems like I am up every hour or so until about 3AM. Then I sleep right up to 5!

Shari
Vermont

Hi Shari,

I've noticed that I have the same problem when I get glutened. I literally pee every 30 minutes or so. I also get really hyper and can't sleep.

When I'm off gluten, I only get up once or twice during the night to pee (still seems excessive, but that's how my bladder works!)

Are you sure you've eliminated all sources of gluten from your diet?

A secret source I found was herbal tea, which I used to drink a bunch of. Many have barley malt that you need to watch out for.

Good luck!!!

Are you new to the gluten-free diet and have cut out a lot of starches? It could be that you are eliminating a lot of excess water from your system. I went through this. Even now, I still get up 1-2 times a night, usually 1 time, depending on what I eat, drink, or whatever.

I have this problem, too. I get up 2-4 times per night to urinate. I also need to urinate every 60-90 minutes during the day, couple with an unquenchable thirst.

I was noticably less thirsty and needed to urinate less after about 6 weeks gluten-free (where I am now), both during the day and during the night.

Anyone else notice less thirst/less need to urinate after going gluten-free?

I have always had to urinate a lot, but I seem to be a little more often after going gluten free (about three months now). I have been feeling pretty good of late (my problems were more fatigue than anything else) but I get dehydrated very easily and drink tons of water. I wake up feeling like I am hungover sometimes because I am so dehydrated. A tall glass of water usually takes care of the problem.

TestyTommy - yes my frequency has reduced by maybe 70% since going gluten-free but I'v only been on the diet for 6 days so I don't know if this will continue. I am still drinking same amount of fluids (8+ glasses water per day plus hot tea or coffee). I have never had severe thirst issues on or off gluten however. I will be very happy if this is my symptom of being glutened since I don't have other GI issues I didn't know how I'd know if I'd taken in gluten by mistake or not.

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Thanks for the feedback. It's good to hear that I am not alone in this. I am peeing less at night now, and infrequently during the day, but yes, I have noticed that I am thirstier than before. I usually have one decaf with cream in the am and then lots of cold drinks the rest of the day. Found that drinking anything after 7PM is a bad idea.

I HAD heard that herbal teas were bad, and just learned in a different post here this morning that annatto is also not a good thing. Any other additives I should know about?

Shari
Vermont

That was the story of my life from the time I was a small child until I went gluten-free. I would be up every 30 minutes. Now, I am up maybe 3 times a night and more often not at all since being gluten-free.

I read a post about this a few weeks ago. People were saying they peed less after going gluten-free. I was still waiting for it to happen, and it finally has! I would go and then have to go 20-30 minutes later and get up several times a night. Now, I get up maybe once a night and I don't have to go as much during the day.

I have to go quite often and I have been gluten free for almost 2 years now.

Yeah, I have the same problem. At first my urologist thought I wasn't voiding completely before bed (I am a middle-aged male with BPH) but the real problem was I just seem to produce a large volume of urine at night - up to a liter. I was getting up 4-6 times per night. This was not impacted by going on a gluten-free diet.

Have you measured your volume? My urologist put me on a synthetic hormone called DDAVP that quiets the kidneys. It is commonly used by Pediatricians to treat bedwetting in children. Apparently, however, some people, as they age, produce insufficient quantities of the natural form of this hormone that nature (God) gives us to decrease urine production at night when we are supposed to sleep. DDAVP mimics this and now I am only getting up 1-2 times per night. It's expensive, however, and my insurance company was only willing to cover it for a limited time.

"I HAD heard that herbal teas were bad, and just learned in a different post here this morning that annatto is also not a good thing. Any other additives I should know about?"

SOME herbal teas have barley, but not nearly all. You just have to check.

Annatto is perfectly gluten-free.

richard

OMG, I thought I was alone with this issue. I drink a gallon plus of water in a day and am always thirsty. I pee so much some days I think I should move a TV tray for the computer into the bathroom to save time.

I have not had more than four hours of sleep solid in years due to the issue. I sure hope within the month of being gluten-free that this subsides! It would be nice to sleep again through the whole night, or at least six hours solid.

Hi, I am new to this list, so please excuse me while I get used to the system. I wanted to reply to the post about frequent trips to the bathroom at night. I have had this for a long time. Lately it has not been as severe, but I have been taking a lot of vitamins and I think it has helped alot. I was wondering if anyone has experienced cramps in the legs. I frequently get a "charlie horse" which is quite painful. I have to get up and walk it off. I am newly diagnosed and trying to go gluten-free, but as you know it seems that Gluten is everywhere! Hope this may help someone.

Until I saw this post, I didn't realize I was peeing less since going gluten-free. But thinking back on the last couple weeks, I'm pretty sure I am peeing less frequently during most days and sleeping through the night most nights as well.

I'm sure most of you have heard about the link between Celiac and diabetes. Both our kids have Celiac and my husband is diabetic (Type1). Severe thirst and frequent urination are common sypmtoms of diabetes. I would encourage all of you to get checked. A gluten free diet includes less starches, thus lower blood sugar in people with diabetes. This might explain what some of you are saying about the diet helping. The body is trying to get rid of the sugar, so it tries to make you thirsty and urinate more to "wash" it out. It may be that the Celiac alone is causing your symptoms, but I would urge you to be tested. It could save your life.

G-Free,

Since starting my gluten-free diet (only a week and a half now) I have started in with the "charlie horse" like cramps in the muscles in my legs as well. I take several really good vitamins (though had to change a few due to gluten issues). I have always taken vitamins and can't for the life of me figure out why the cramps have started up. I have been eating two bananas per day as I know that vitamin K is important for cramps in muscles. Others have suggested a more complex B series. In checking with the vitamins I take, I have noticed that they are rich in B1, B2, B6 and B12. I have a follow up with the diatician and doctor this week and will ask about this problem.

The leg cramping is one thing that is still happening to me after 8 months gluten-free. It's either my calf, or sometimes, my foot. I have to get up and put weight on it for it to subside. Sometimes, all I have to do is move my leg wrong--and that will cause a spasm. The tip about being tested for diabetes was a good one. I was feeling thirstier than usual, and getting up at night to use the bathroom. I was tested, and happily, I'm fine. Never hurts to make sure, though

I am most certainly peeing less frequently after having been gluten-free for 10 months. I suppose gluten could be causing inflamation making it hard to completely void the bladder. (Just my theory.) I think that gluten is a huge cause of my joint pain and lots of other issues attributable to inflamation and irritation.

I am generally sleeping much better. I used to wake up with my feet blazing hot. The only way to cool them off and to get back to sleep was to walk on the cold bathroom tile and to drink a glass of water. (With both of my pregnancies, I would resort to placing my feet in the refridgerator to cool them down.) Now that I am gluten-free, my feet are actually cold during the night. I now am putting 2 and 2 together to see that hot feet at night is my first sign that I have gotten a bit of gluten, I do have to pee a lot more, and then my face breaks out and my shoulders hurt.

Jerseyangel, you might have fewer leg cramps if you get more potassium. If you can eat more bananas, do. If you can't, like me, eat mushrooms, especially portabello.

This web site and this Forum are truly making me feel less like a "freak of nature".

Cape,

This is so interesting! I have had burning feet at night off and on for years and have never been able to find the cause. Mine itch intensely also, but there is never a rash or anything. Maybe it's been gluten! I wonder if anyone else here has had that problem?

Thanks for sharing Cape.

Oh, wow, that used to happen to me -- to the point where I was starting to worry I was pregnant, lol!

This has been a real problem for me for some time also. Heaven help us if hubby and I are going for a long car trip as it's never too long before I will be calling out for a pit stop! Night time is a real problem and even though I make sure I don't drink anything several hours before bedtime I still will wake up 90 min. after falling asleep with that darn urge and will usually have at least another 3X's. I also experiance hot flashes during these night urges so I get double whammy'd Through another totally different forum I learned of a product called EnurAid which helps to control the urges. I happened to try it for the first time today when I had to go do some shopping. Usually by the time I get to this store I am running for the rest room but today I made it through until I got home before I had to go so I would say that this worked for me. It appears to be Gluten free but I do see that it does have Lactose listed in the ingredients. I'll certainly be using this again on our next long car trip

Linda/NJ

I second this recommendation. Even if not diabetic one may be pre-diabetic. All of that notwithstanding, check your sugar intake for cause of frequent urination. Are you drinking soft-drinks, eating candy? Just one soda a day can do it. Eliminate all extra sugars from your diet and see if that doesn't make a difference. I notice that when I'm down to the bare-bones diet of meat, fruits, vegetables, I can actually sleep through the night.

I'm not going to tell anyone NOT to get tested for diabetes or to eat a lot of sugar (I eat virtually no sugar besides what I get from fruit), but my experience has been that doctors will immediately test you for diabetes if you tell them that you are urinating frequently. Then, when you test negative (as I did --- eight times!) they dismiss your symptoms and say 'Don't drink so much'. No one mentions that it might be related to celiac.

I think the numerous posts on this board show that there is some sort of link between eating gluten and having to urinate frequently, so it's important to let people know that. The link between frequent urination and diabetes is well known; a link between frequent urination and celiac is not.

Hi

I thought I would comment on this frequency of urine and thirst problem. I was diagnosed with Celiac earlier this year (I'm 52). I live in the Netherlands but I'm English and the doctors here are great and very thorough. I was first diagnosed with Vitamin B12 and Folic Acid deficiency and have regular treatment for it. For two years now I've also had a great thirst and pee about every 90 minutes and on average three times in the night sometimes more. Alcohol makes it worse so I tend to avoid it. I drink 3 litres of water a day (around six pints I guess). If I don't I feel really ill. Even after my diet and B12 injections and supplements began I found I still suffered from neurological problems and my balance is generally bad. I still have fatigue and palpitations, which is the worst thing. A neurologist suggested my B12 levels be kept high. I was hoping this would work but I'm still tired and have vertgo. I left the thirst problems until recently as everything else was being sorted out and seemed more important. My Gastro ordered a capsule endoscopy and another ordinary one to make sure everything was all right, and it is. I was refered to another doctor who thought I had a bladder problem rather than Diabetes Insipidus (DI) as my family doctor had suggested. But my bladder tests came out all right so I've just spent two days in hospital having the water deprivation test. I'm waiting for the response but don't hold out much hope for answers.

My main symptoms were terrible thirst on average drinking three litres a day (mainly water), urinating on average 12 times a day, very pale urine even first thing in the morning and if I haven't drank much, fast heart beat in the mornings and general fatigue. Sometimes I wake up with a hangover feeling, headache, and pressure behind my eyes. I only ever drink tea without milk and water.

In my own research I came across several celiac people who thought they also had DI or their children did. I also saw that one or two had been diagnosed with it and some children. If anyone else has this problem and their sugar levels are all right I really think it's worth checking out. You never know, something might be discovered or at least something suggested to help, because so much disturbance of sleep can't be good.

I too have the frequent urninations during the night. It began just recently for me. I do have that severe dehydrated feeling as well. But I can't drink lots of water it gives me diahrrea.

good luck
sickchick

I'll add one more "me too"! When I've been glutened I have to pee over and over for hours. In between my bladder is uncomfortable too, almost like having a urinary tract infection but it goes away on its own after the gluten episode. Sometimes this happens at night and it's hard to sleep (and very hard for my husband to sleep as I am shuffling into the bathroom all night!)

I've also had the other type of frequent need to pee-- just after I went gluten free I dropped a lot of water weight. It wasn't uncomfortable, but I peed frequently for a few days as the stomach bloat, swollen fingers and oversize legs deflated. This was the good kind I guess!

I had been complaining about this for about 8 months....my doctor told me the other day, it was because I am not sleeping, ---- so my system just keeps going???

Anyway, I am drinking fresh pressed, organic cranberry juice...it is very expensive, about $8.50 a bottle. (It is a bit sour since there is no added sugars, and all natural!!) I drink about 1/2 cup full every evening, and I have noticed a big, big change - I can go all night without getting up to go...it is amazing!! It took about 4 days before I noticed, and it keeps getting better. Last night I made it 7 hours - that was the longest ever!!!

My father takes the whole cranberry herb, and that helps him as well to get through the night without getting up.

I was years into being gluten-free and still waking up 3 or 4x/night to pee. It wasn't just nighttime tho. I'd have to go every 30-40min all day too. Admittedly I WAS drinking a lot of water - but not at night!

All of it ended when I found my final food intolerance - that dreaded soy.

NoSoyBoy isn't always looking for a bathroom.

I find that if I eat too many foods high in salicylates I feel like I have a bladder infection, and have to go to the bathroom all the time. Too much fruit or juice could be a problem with some of you.

I will get leg cramps when I don't get enough magnesium!

And I agree that soy could be a problem, as many people with celiac disease will eat a lot of stuff made with soy flour, or drink soy milk if they can't tolerate dairy.

Gluten will definitely have an effect on my bladder as well.

I too struggle with this issue. I have had celiac for so long now (abt 48 years) that I didn't connect the two. I just joined this forum because even after that amount of time I'm hoping for more current research on celiac and how to live well. I have mostly learned from trial and error and a very dedicated Mom!

I had always read that two of the primary causes of nighttime muscles cramps are dehydration and not enough calcium. Judging by how much some of us go at night dehydration makes sense, LOL. And I wonder how many people here who experience leg cramps are also lactose intolerant so they're not drinking milk or eating chesse? It seems that as long as I faithfully take my vitamins and supplements and have some food sources rich in calcium every day the leg cramps stay away.

I haven't figured out what the peeing is about yet though. Some nights I get up three or four times and some nights I don't get up at all and sleep through the night. I have yet to put my finger on a common denominator for that.

Violet

Hi again

I wrote back in July about Diabetes Insipidus. I've just come out of hospital after having a second water deprivation test, this time for longer. The test was stopped as my serium sodium went too high, also my urine stiil wasn't concentrating (after 16 hours). I was given the DDAVP injection and after another four hours I was allowed access to the tap! So it certainly looks as if I have CDI. I'm going back in a couple of weeks to see the specialist. He did say an MRI would be next if I was diagnosed (back in July) and at that point he did suspect I did have it.

I have to say that I have found people on other forums with the same symptoms and who also have Coeliac. I also found people including children with a diagnosis of DI and people who were convinced they had it. I'm sure there must be a link. I will tell my gastro next time I see him. It seems a coincidence that most of my worst symptoms (including B12 deficiency) began two and half years ago and all at the same time. My problems did get worse just over a year ago and I'm fed up with not feeling normal. My balance is still bad and I easily get tired. I hope this diagnosis will help.

I think if anyone does have problems with thirst and too many visits to the toilet, then they should push for a water deprivation test, especially if tests for glucose are normal. You could also collect your own urine and see how much you do pee and how much you drink. Count how many times you visit the toilet as this was helpful to the doctor. My specialist said about 6 times was normal and I went 12 times plus and drank 3 litres on average. I also tried to do without water and could see that my urine still wasn't concentrating and it stayed a pale (ish) yellow. I quite often have a hangover feeling. Alcohol makes it all worse.

I also suffered cramps and leg twitching. My sodium was sometimes low (showed up in blood tests) as I overdid the water I think. I did add a little more salt to my diet as it is very low in salt, but only a little, which helped. I am lactose intolerant. There is supposed to be a lot of salt in cheese so eating more may help the cramps if the problem is low salt. I get my calcium (which is okay according to blood tests and bone scans) from soya millk with extra calcium and small amounts of mature cheese and parmesan.

I hope this isn't too much information

Ria

I am new here only a few months gluten free and I have to urinate sometimes every half hour and nightly 3 or 5 times. It is a problem since years of course. I am frightened, mostly the doctors do not find anything (and prescribe valum or other such calming stuff which I wd not tolerate anyway)- but now there was some blood in my urine (tested). I must go back to check. There are so many factors in this condition...it is way too dificult to control everything around me, my family eats only gluten...still I am thankful, since my depression and my obsessivity has diminished indeed so it seems sometimes it is worth suffering...And I do get cramps in my legs...and I do take magnesium too..But I forgot if that is connected to the symptom of frequent urination. some people say they go less frequently since de-glutenizing...So probably I was unsuccessful maybe there is gluten hidden somewhere...Dunno.:-)

I had the same problem when i went gluten free. I was peeing all the time. I had to get up two or three times a night and i never had to do that before. About 5-6 months after going gluten free it slowly started to resolve. Now I am back to my normal amount and do not wake up in the middle of the night.

I experienced the same problem and was getting up to pee every 2 hrs. at night. After I had been gluten free for 4 or so more days- I slept through the night for the first time in months. Then, a few days later, I again started getting up to pee in the night but I was eliminating water that my body was holding onto and was finally being allowed to release. My chiropractor said water can be stored in all sorts of pockets in the body; like tissues between the organs and such. A week of this and I was/am 2 sizes smaller- no peeing in the night, either. (Been on the diet for 2 1/2 months-self diagnosed.)

Hello again!

Well, it's now been a few months since I have been diagnosed with Diabetes Insipidus (cause unknown). I take desmopressine tablets once at night and once at midday (the spray caused me to feel ill). I can't take any more tablets as I don't tolerate them well, but it's great not to have to pee every hour. When they wear off in the morrning I'm peeing every half hour until I take another one. But it's great to be able to go out and not have to locate the nearest loo. and to go for a walk that's longer than half an hour (after I've taken the tablet).

If anyone has a severe problem with peeing more than normal and it doesn't seem to be to do with being glutened, then I would have it checked out further. I had no urine infection problems, was careful with my diet, but suffered this problem for three years before my GP (who was great about it), checked it out. The internist didn't quite believe I had it and tested me twice. I now sleep for at least six hours without waking, and most nights do not have to pee even once.

I have come across other forums where children and adults have both coeliac and DI. So worth considering if you have an ongoing problem.

Two things that came to mind as I started to read this topic. In my reading about trying to find out certain things I found out that eating too much protein or consuming too much caffeine can cause the kidneys to work overtime. Hence peeing a lot and dehydration.
There are so many things and these two may not mean anything..but I am just always amazing at what I read when looking up something.

Just throwing this out there------- excessive urination is one of the classic symptoms of diabetes.

If I eat or drnk the wrong thing I have a lot of problems with incontinance; and not just a night. Certain vinegars really tear me up. The cramps you are experiencing are nocturnal cramps. The precise cause of these cramps is unclear, but your frequent urination could be causing dehydration and that is one cause. Low levels of calcium and/or sodium can cause cramps Also, not getting enough Vitamin D can impair calcium absorption. Like they said in X-Files, "We are not alone:.