Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Waking Up Every Hour To Pee


wilbragirl

Recommended Posts

wilbragirl Apprentice

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 :angry:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 67
  • Created
  • Last Reply
GlutenFreeAl Contributor

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!!!

jerseyangel Proficient

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.

TestyTommy Rookie

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?

Nashville Contributor

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.

floridanative Community Regular

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.

wilbragirl Apprentice

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 :rolleyes:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rusla Enthusiast

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.

Guest cassidy

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.

Carriefaith Enthusiast
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!
I have to go quite often and I have been gluten free for almost 2 years now.
trents Grand Master

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 :angry:

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.

lovegrov Collaborator

"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

Timber4est Rookie

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.

G-Free Newbie

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 :angry:

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.

Clark Bent as Stupor-Man Contributor

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.

TCA Contributor

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.

Timber4est Rookie

gluten-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.

jerseyangel Proficient

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 :)

Cape Newbie

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".

SuzieQ Rookie
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.

  • 3 weeks later...
Guest Pixi

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

Linda352 Rookie

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 :angry: and will usually have at least another 3X's. I also experiance hot flashes during these night urges so I get double whammy'd :rolleyes: 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 :P

Linda/NJ

megsylvan2 Apprentice
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.

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.

TestyTommy Rookie
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.

  • 1 year later...
Ria-T Newbie

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    2. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    5. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748

    SinnamonToasty
    Newest Member
    SinnamonToasty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.