Just when I think this crappy disease can’t get any crappier…I get an email like the one below.
This mom reached out to me because her soon to be 14-year-old son is depressed. You see…he has celiac disease and whenever he gets glutened, he wets the bed.
It happened again recently and he was at a friend’s house.
I can’t imagine the heartbreak.
She is not asking me to directly help him. But she is asking for some support. She was hoping that by me putting this out there, another parent might open up and share his or her story.
And the son is asking if it has happened to others out there and “he wants to know if it will stop.”
So if you’ve got some experience with this, please share your story.
And if not, a few words of support would be most appreciated.
This disease just sucks.
Here’s her email…
My son has always been a bet wetter. However, that along with a host of other strange ailments all went away with his celiac diagnosis and cessation of gluten.
No doctors will admit bed wetting is connected to Celiac Disease but in our home we know differently.
The crappy part is whenever he is glutened, the bed wetting comes back until the “poison” is out of his system.
He’s two weeks shy of 14 and is begging to have some depression and anxiety over this issue.
Of course we always do whatever it takes to get him healthy and have appointments set up to ease him through. Just having my self and his sister to confide in (we both have Celiac too) seems to help most times. My husband lives 100% GF to support all of us. Our structure is very good here.
But I was wondering if there’s anyone out there in “Dude-Land” that would be willing to talk about this. To show my son it’s more common than he thinks.
Thank you!
Anonymous Mom
So sorry to hear that no doctors will acknowledge the many side effects of Celiac, but it’s great to hear that you are so supportive of your son! I am a 15-year-old girl and your son is definitely not the only one with embarrassing Celiac-related side effects.. I personally become very, very emotional (as in, crying about the colour of my shoes or something ridiculous like that) and have unstoppable flatulence. It’s happened at friends’ houses, at school, and even once on a camping trip with some of my best friends. I have just had to explain everything to everyone and although some people just don’t get it, the majority of my friends are really supportive and can see that I’m really embarrassed about it! I’ve never heard of a bed-wetting case as yet but I’m positive there are more people out there. For now, (and I know this sounds like rubbish advice!), try to minimise the risk of being glutened at particularly bad times such as sleepovers or school trips by bringing your own non-cross-contaminated ‘safe food’ and try to make it a laughing matter. At first, I was really embarrassed about my flatulence, but thanks to my family and friends, I laugh it off now – stupid Celiac! 🙂 Good luck to you and your son – it will get better eventually!
Tell your son Thank you for posting this. He is not the only teenager to experience this side effect. It all make sense now.
He shouldn’t worry about it! He probably has so many other good things he should focus on in his life 🙂
Hi, I am so sorry to hear what has happened to your son and the symptoms he faces. I have never thought about bed wetting as a symptom of Celiac until this but I am sure others face this. Your sons symptoms could also help others to realize that they are not alone! Please do not feel embarrassed, as this disease takes our bodies and does unexplainable things to us. I have gone out to dinner with non- celiac friends and ordered “gluten-free” food that sent me into a seizure right in the middle of dinner (my epilepsy is triggered by gluten) so I understand your frustration! This disease sucks for sure! Good luck and stay strong!
My son is 15 and was diagnosed a little over a year ago with Celiac. He has always been a bet wetter. As soon as he went gluten free, the bed wetting stopped. EXCEPT when he gets glutened. This just happened yesterday for the first time in a while. We connected all of this ourselves as well. Please don’t think you are alone. I am so glad you shared your story because now I know my son is not alone and I can share this with him. I hope this helps a little.
Also, for sleepovers he has a thick sleeping bag with nylon outer shell. He packs extra clothes and carries his sleeping bag in a plastic garbag bag. If there’s an accident he can throw everything back in the garbage bag and he still leaves the way he came. He also tries to avoid caffeinated drinks at sleepovers. On trips we pack one of those flat waterproof pads to put on any guest or hotel beds. We’ve also used garbage bags in a pinch while traveling for a waterproof barrier.
I know it stinks, but tell your son it has definitely gotten much better and less frequent for us.
Well, Mom.
Since gluten causes me (and any other celiac I know) to feel tremendous abdominal pressure and pain, thus creating urinary frequency, I have no doubt there is a correlation between the episodes of bed-wetting in kiddos after being glutened. The bladder can become inflamed and irritated, just like any other organ in the body, so it makes total sense to me. This is a systemic disease..it affects us head to toe.
I think ALESSANDRA’s advice is spot on–if he knows he is going to be out with friends all night, he has to bring his own snacks. He should ALWAYS have a backpack full of good stuff with him anyway– so he can avoid being glutened again. Since your home is 100% GF, the only way he’s getting hit…is when he is out. He will have to be extra careful, but he can do it. .
Anyone who was a bed-wetter as a child, outgrows it . Please tell him not to give any more thought or worry to this because he’s going to be fine!.
I want to add that I think all these great kiddos with celiac who take control of it are AMAZING! I meet many adults who are less accepting and mature about the diagnosis and they never come to terms with it at all. So, big kudos to you guys!
😉
He is not alone at all! This used to happen to me all the time when I was younger and I would eat gluten. There was no way for me to control it. I did eventually grow out of it. Now gluten tries to escape in many different ways.
Thanks for sharing! This used to break my heart and I felt so embarrassed all the time!
I haven’t had this problem but I get severe night sweats if I have any gluten exposure. So severe that I soak the bed and have to change the sheets and my pajamas. It’s a total drag. So I can relate.
The body is an amazing machine, celiac the broken cog so to speak. Considering my celiac causes night sweats, PAINFUL muscle spasms in my gut & other muscles & other symptoms this makes total sense. The bladder like a water balloon is just a giant muscle that in this case sounds like its spasming too.
While the explaination that there is not one case of anyone dying of embarassment sounds good; it doesn’t help a kid whose life is already complicated/”unfair”. Add on the VERY frequent symptom of mood swings when glutened to teen hormones & “terminal embarassment” you have a powder keg. Frankly my suggestion is a compromise…find a therapist that preferable HAS celiac disease (not just one that will “brush up” from a book) & give him someone to talk to about how he feels instead of anxiety drugs that frequently contain gluten & might compound the situation. Your local celiac group should know of someone. Might also try teen celiac group (or start one) to allow SAFE social interaction with other kids.
Pizza & beer will forever be temptations because its cheap, easy & the other kids are all doing it. Sorry kiddo that is not your path!! Yes its unfair, yes its painful & sucks. This may be your new mark for “is it worth it”. Yes pizza smells great & you have no food choices past what you brought with you…BUT is it worth pissing your pants for?
My hands curl up into painful hooks when eat gluten. They look kind of like grandma hands & I’m younger than many of your teachers. That pain for days is my mark…I know it will happen if I eat gluten on purpose, its so painful I can’t text or type or drive so I work very hard to avoid even accidental exposure. I keep bars with me, bring food from home when I’m not sure of what’s for dinner & DO NOT fall for the temptation of free food everyone else gets!!!
I’m 33, and I get this, too!
We are all magnificent being seeking to be ok.
I have heard of this side effect.
My boys do not have Celiac, so this isn’t an issue with them but here is what my kids did with sleep- overs. They usually had an early sports game or just felt odd sleeping at other people’s houses ( if they didn’t know the parents). We started doing this and a lot of other kids & parents liked the idea. You go to the sleep- over and at 11 or midnight, you go home for the sleeping part. We even had one in the neighborhood where the kids had 8 am soccer games and after the games, went back to the sleep- over house for pancakes. That isn’t really an option for up your son. Obviously, he should not eat any of the food provided. He could bring things to share like individual bags of chips or candy. Things other kids will only touch of their own.
Also, bring his own thick sleeping bag. Tell him to be sure to go to the bathroom before sleeping and maybe not drink a lot at the party. Keep fresh clothes next to the sleeping bag and change in the bag and wad it all up before anyone sees. Sleep closest to the bathroom for a quick escape to change. Maybe even have 2 pairs of the same color sweat pants or shorts to sleep in so no one notices.
I was a very frequent bedwetter as a young kid and early teenager…it did happen a few times at sleepovers..but I did grow out of it right about 14. I never understood why it happened..never knew I had celiac until nearly 30 years after the fact. Hang in there, it gets better!
I wanted to add that I am, to this day, prone to UTI’s, and getting up frequently to pee at night, even after being gluten free for over a year. Probiotics have helped me tremendously with this, over the past few months.
I second this suggestion of probiotics…for ALL celiac guts and healthy GI tracts! 🙂
hey kiddo. i was 16 before i stopped wetting the bed. it happens.
regardless of gluten, your mind and body will eventually sync up and figure out how to get you awake when you have to go. even now, 30 years later, i still dream about going to the bathroom when i have to go in real life. it’s become a trigger. bathroom dream = wake up now!
but if you KNOW that gluten is what causes you to wet, then stop eating it. at least, be that much more careful if you know you have to sleep overnight somewhere other than home. you DO have a means of control – use it.
very cool your family is staying 100 percent GF. sounds like they love you a lot. =)
I have celiac’s, am 53 now, and yes, had extreme bed wetting problems for years. The bed wetting got better as I got older (teen years) but I continued to have “a very weak bladder.” Until reading this post and thread I didn’t ever tie it to my celiac’s! I think the above posts hold a lot of great advice that I hope you find helpful. I’m so glad he has such a supportive family! I don’t have any specific advice, just wanted you to know that I am one more person out there with the same problem and he is not alone!
Just heard from “Anonymous Mom” who wrote the above letter. She says, and I quote, “The responses have made a big difference already!”
God bless the power of the internet and god bless this community.
Thanks folks.
Poor guy. I’m glad others confirmed that your son is not alone. All I could think while reading your letter is that it wouldn’t surprise me to find that it is a side effect of gluten because it seems to hit a lot of people in weird ways. My main side effects are edema and difficulty breathing, which my doctor says is likely caused from the gluten-induced edema. So it does affect the fluid in the body.
I like the suggestion of the kids actually going home to sleep. You could also try to have sleepovers at your house to avoid the risk of cross-contamination.
Wow! I have been incontinent since I was a bed wetter as a little girl. I am 45 and just diagnosed with Celiac Sprue. It was thrown into my lap a month ago and told to get a nutritionist and abandoned by the gastro doctor. I have no idea what I am doing. Tell your son he is not alone and is an inspiration to us all. Websites dont list all of the symptoms I have recently noticed. Having a voice and using it will help us all live with this new life changing disease.
Hi Peggy….welcome to the family! 🙂
I suggest you read
Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler
and Celiac: the First Year by Jules Shepard to get you started.
Also, read through this thread for celiac “newbies”::)
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/:
No one should be abandoned by their gastro doc after a DX. This makes me furious whenever I hear this from the newbs. (My doc gets mad about it, too) But I promise you, YOU are NOT alone!
It’s why the celiac/GF community is here ….for each other.
Anything I can do to help, I will. You’re going to be okay!
IH
Oh gosh thank you IrishHeart. I am relieved I finally found the truth section of CD internet. I am tired of the lies and insufficient data available. I am in tears right now because I was so scared and felt alone. And honestly I am having a very bad day because I have run out of gluten items in my pantry and I have been eating gluten for a few days. I am embarrassed to say why I dont have any food left but this is when I need to reach out. I lost my job of 20+ years because I got too sick to work and they fired me May of 2012. I lost my health care benefits and never could afford to go to the doctor anymore. Then the unemployment ran out 6 months ago. With no income from either my husband or I we went on foodstamps and medicaid. Once on medicaid I hooked up with my gastro doctor for a colonoscopy and endoscopy which yielded my new dx of CSD Celiac Sprue Disease. So our foodstamp budget didnt last very long for this month. I am so sick right now. I feel like I have bad flu on top of all the regular symptoms. I am also loosing my internet and phone next week so I am hurrying my research on the disease. I am sure we will survive and get through this. Thanks to Gluten Dude!!!
OMG!
So, I’m currently 34, I found out I couldn’t eat gluten when I was 31. (Not celiac, I guess? Test ce back negative but it makes me super sick.)
But anyway, I wet the bed until I was 13. It sucked. My parents tried alarms, they tried everything to get me to wake up in the night and go to the toilet. I never did, wake up that is, but eventually it just stopped. We never knew why.
But what sucked was that because of that my family stopped going camping, I never spent the night anywhere, and even one family trip we took I remember wetting the sleeping bag. Terrible.
I’m sorry you’re going through this. You’re so lucky to know why though.
Hello Laurel,
I am very sorry to hear that you also had to go through this very difficult situation. I just wanted to say that it is never, ever a child’s fault when he or she wets the bed. The reason why it happens is because the nerve endings and connections that control bladder function take time to form. So children really can’t stop bed wetting from happening because their bodies are still forming the necessary neural connections. It just takes time for the nerve endings to mature so that they can let the brain know what to do.
Actually thank you for posting this! My daughter who has celiac disease has very serious incontinence issues including bed wetting. She is 6 years old. Before we discovered that she had celiac disease, her urine also had a terrible ODOR. I can not even tell you how many times we saw urologists and her pediatrician about this. Much of this resolved after she went gluten free, especially the odor. I have asked MANY people about this and never gotten any kind of answer about it. The usual answer is, “I have no idea..” My advice to the mom is that tell your son it does seem to be part of the celiac process. He should really try to avoid getting glutened when hanging out with his friends (I know its hard…) If he is feeling depressed, I would definitely intervene with having him see a therapist. This is a VERY difficult disease and if your teenage son is telling you he is upset and depressed, I would intervene immediately with getting him someone to talk to professionally. My daughter is going to start therapy to talk about her feelings about this. He is not alone and I would say that my daughter’s incontinence and bed wetting was one of the biggest components of the disease. Sending you lots of support!! 🙂
Dear Anonymous Mom,
I am very sorry to hear about the pain that your son is going through. I also have celiac disease, and I had problems with wetting the bed until I was about twelve years old. It was very difficult for me. There were also a few times that I wet the bed when I was away from home, and that was the hardest to deal with. Eventually, as my body grew, the bed wetting stopped. An important fact to remember is that the nerve endings that help to control the bladder take time to form and mature. For me, it took twelve years, but it eventually happened. I think it takes longer for a person who has celiac disease due to the inflammation and malnutrition caused by this disease. Thankfully, a completely gluten-free diet can help to start the healing process.
Celiac disease is very difficult to deal with because it makes a person’s body function differently because of all the stress, inflammation, and nutrient deficiencies. Please tell your son to be kind to himself, his body went through a trauma and it takes time and patience to get better again. Please let him know that he is not alone in the difficulties that he is going through.
Sending you and your family best wishes,
Tina
Thank you all for your kind words. My son is a very strong young man and we are very close family who leans one one another for support….but we never knew there were so many out there dealing with the same issue. We turned to GlutenDude in hopes that sharing this would help him….but it looks like this post also helped others.
He wants you all to know he is touched by your words of encouragement and says to keep strong , fight on through Celiac!
We had a nice laugh when I told him I wet the bed until my teen years….but always blamed the dog!
Thank you again!
Anonymous Mom & Son
I know this thread was created a long time ago, but I have a 10 year old coeliac son…. and the penny just dropped with us as to why he might be wetting the bed… he is on a gf diet, but was glutened at lunch today (had a dry bed for 2 weeks now) … and already a wet bad at 2300hrs. It will be wet again in the morning, with an unmistakeable odour. It is strangely comforting to read these stories… I will be showing them to my son. THANK YOU for sharing.
Hi – I have celiac disease but, while I don’t have the bed wetting problems, I have other weird symptoms. For instance, when I get glutened, my hands won’t grip well and I drop stuff (I broke a jar of mayo on the floor!), can’t open coke bottles, and can’t bend my fingers very well. And I walk really funny because my feet hurt so bad.
We are a very odd little community, aren’t we?
My only advice is to remember that everyone has issues. Ours is celiac disease but others may be dealing with their own embarrassing problems. Be kind to yourself and be kind to others.
As I read this story my heart just ached for this young man! What a mess this disease brings to all of us who deal with it! Everyday! Kudos to his family for their support and kudos to all the friends who have his back! They are to be cherished. But, I also want to thank them for sharing this story. I have a friend who has four daughters – two are Celiac. One of the non-celiac sisters has had a bed wetting problem all the years of her growing up. For that reason the girls were often the sleepover hosts. I do not think that this sister has been tested for Celiac since she had no symptoms – or so was thought. I will share this story with her mother so that they will know that there is yet another symptom to link to CD. Your sharing could well be the awareness needed to help this young woman.
I am amazed at all of the new symptoms popping up just on one blog item. Is anyone keeping track of all the different ones mentioned and added to a list somewhere?
There are over 300 symptoms associated with celiac and gluten sensitivity. Read this:
http://www.cureceliacdisease.org/medical-professionals/guide
Wow, I was just talking about this to my husband and telling him my theory that the gluten caused my bed wetting. I was a bed wetter as a child and never knew why. I was diagnosed 3 yrs ago with gluten intolerance not celiac but had damage in my intestines not sure what that means but that is a whole other rant. The bed wetting went away for the most part but as I got older and just up until I cut gluten out I would occasionally wet the bed and seemed to happen if I drank beer (and usually ate all sorts of gluten filled foods at the same time.) My husband said maybe I had to much and maybe once or twice that could have been the case but for the most part it made no sense and now after going gluten free I have not had that problem at all. I have had a couple glasses of wine or gluten free beer and this does not happen. My theory was that when I get severely glutened that happens. I cant wait to go home and show him this article and show him. Tell your son to hang in there It is quite traumatic as a child and adult as well but at least he knows there are others. I used to do the same thing… I usually told people my mother did not allow me to sleep at other peoples houses but I could come over for the night and she would pic me up late. I wish people would talk about these issues in schools along with the bulling thing. It sucks to feel isolated for something you can’t control. At least he knows that the gluten is the cause and can hopefully control it. Sending you and your son both positive vibes. 🙂
Yes. My early-teen children both have celiac, and they both are prone to wet the bed when glutened, even now when they’ve been off of gluten for 6+ years.
I can see how this can happen. When I get gluten I crave salt and then water. Then I’m up all night! If I was a harder sleeper this would be a real issue for me as well!
It’s difficult when you’re a kid (especially a teenager), and you’ve got a condition that makes you have to do things differently. All of the comments about the bedwetting are great! It will eventually stop, but when you have a dream about urinating, it’s time to get up. I’ve started to go when I’m asleep a couple of times. Here’s a trick: before you go to sleep, ask/tell your mind to alert you if you’re having a dream about peeing or are having any pressure on your bladder. If you persist in doing this, your sleeping mind will become better at alerting you. I’ve worked for many years as a therapist; people often think it’s weird to ask your mind to alert you to something, but it does work. Good luck!
You have an awesome name, Ginny! 🙂
I had a bad bed wetting problem until I was 17. I’m a guy. It sucked. I grew out of it, with no explanation. Never once did I think it was Celiac’s, but I didn’t know it existed. Its a year later now, my symptoms have gotten worse and I just found this blog. Hopefully, I can figure out how to live with this.
Ray, you will find your way. You will have a happy, healthy life! We just do a few things different. You can do this!
Thank you.
Ray,
I just answered you on the other blog thread, where you talked about your struggle. We’re here to help.
Hang in there, hon.
Anonymous Mom,
Happens every time when our 9-yr old gets gluten, that and lower back pain are his first indicators.
My son is 11 and has PKU, when he cheats on his low-protein diet (usually with bread) he wets his bed as well. I’ve removed all Gluten products from our house which makes it hard on my husband and middle son, but it seems to have worked with my little guy. Only 1 wet bed in 3 weeks. Have patience with your son, I’ve been dealing with special diets for 17 years (my 17 year old has PKU as well, I’m recently diagnosed Celiac) and everyone cheats it just takes time. Oh, and if you haven’t tried this, cut off all fluids by 7:30, have him go potty before he goes to bed and if you can, wake him before you go to bed as well and take him again. All the best.
Kim
Hi everyone i have so many health issues cronic fatiuge most my life fybrmyalgia ibs n a host of other things ive never felt normal cant get out off bed most days n in constant pain lactose n dairy intolerent i dnt take any persceibed drugs eat all fresh food most of the tym one thing i never new about was gluten iam waiting for bloods to cum bk at mo re coeliac every symptom ive chkd on here relates to gluten my hair which was once so thick is droping off my head nervous breakdown lasted severn yrs eyebrows n eyelashes r coming out thyriod tests normal pounding heart. Docs n specialist furriate me in there lack of knowelage n dnt want t no but pushin ahead bed wetting ran in my family n cant believe this could b another symtom. Its mre common then people think so gud luk everyone dnt give up this site is fab thk u xx
I have a nine year old who has been suffering with gluten intolerance for about 9 months or more now. He was never a bed wetter as a little one. In fact, he was dry at night long before he ever learned to use the toilet. But, since becoming gluten intolerant, he has had some minor bed wetting issues on and off for several months now. It is so frustrating as he and I both have not been getting a good night’s sleep due to the wake ups and need for a trip to the bathroom and new jammies. Not sure how it is all connected, but it must be, as this was never a problem before. Hugs to you! You are not alone!
Hey, Folks – new to the party here – our son was diagnosed just within the past couple of weeks – bedwetting was absolutely a concern for our 12 year old – it’s amazing how Celiac answers various “strange” things for him like a jigsaw puzzle piece that fits perfectly (mysterious stomach pain, bedwetting, a “dip” in his growth chart, appetite) – when we met with the GI, I tested his willingness to associate bedwetting to the disease – as an AMA doctor, he predictably wouldn’t make any statement other than “I’ve heard that from a lot of people” – translation for those of us not beholden to corporate medical care: Yes, bedwetting is one condition stemming from the body fighting off what it considers a poison (thanks, purveyors of GMOs … actually, no thanks)
My daughter also tends to have incontinence when glutened. She has it during the day as well and will “leak” urine 🙁 He isn’t the only one!!
The truth, which no one here seems to know, is that for every organ and tissue type in the body, there are genes that can make one vulnerable to gluten induced autoimmune attack of that organ or tissue. The most common main celiac gene, the HLA-DQ 2.5 (alpha portion is 05 01 and beta is 02 01) is a gene for multiple sclerosis and gluten ataxia. It is the second most common gene among Caucasian Americans at that locus. The most common gene among Caucasian Americans at that locus is HLA-DQB 06 02, which is a gene for gluten ataxia and MS. Bed wetting is an MS symptom, although a symptom of other problems also. The point is that it is a neurological problem and more people suffer autoimmune neurological damage from gluten than those who suffer enteropathy. No one with celiac disease is likely to only get one autoimmune disease from gluten unless they are diagnosed by age 2 and never get any gluten exposure.
Hi guys- very brave of you to speak up about a silent problem that is breathtakingly difficult to deal with. Not everyone grows out of the bedwetting issue, although the majority do, somewhere in mid-late teens. In our family we focus on management rather than saying ” it’s ok you will grow out of it”..as the person then feels even worse when they don’t grow out of it, and can hate their body and its betrayal of them even more. We give as much support as we can- be the advocate, for sleep overs, take own waterproof mattress protectors, ring motels in advance and insist they have waterproof covers or mattresses, visit physio’s and doctors with the child, be proactive with working out a system with teachers that will work on school excursions ( take spare sheets, garbage bags, child given special discreet time to set bed up, teacher wake child 15 mins before everyone else so they can shower/re-make bed before their peers wake up) Good luck, and never miss out on what you want to do in life, just be organised and plan for it all! Good luck!
I am *so* thankful for this blog post. My daughter was recently diagnosed with Celiac Disease. She’s 9 years old. She has always wet the bed. It didn’t matter what we did, she wet. Often times, we’d change the sheets, put her back to bed, and she’d be wet again a couple hours later.
Over the last 2 weeks (when we found out the diagnosis), she has only wet twice. Both times she had eaten gluten by mistake. I never connected the dots until stumbling upon this article.
Thank you SO much for bringing this to my attention! She is going to be so happy when I share this with her!!
My twin bother and I both were bed wetters. He died thirty years ago at age 32 I got diagnosed at age 33 with DH the celiac rash and Im sure thats what he had before he died. Your post brought back so many memories of my twin brother!! For these past 30 years I have nothing good to say about my doctors. Stay in tune with this blog- Gluten Dude has been my source of real help and healing. I am finally on the right track and learn something new all the time.
I just turned 21 a few months ago I was also diagnosed with celiac disease not long after I’ve been having the same issues and every time it happens I’m always confused because I thought the last time would be the absolute last time it happens but sure enough every time I get gluttened it happens it’s just so frustrating