I am new to this board as I have mostly been in the baking and cooking section. Quick intro...My Husband is diagnosed with celiac and has been gluten-free for 1 1/2 years. His brother, 2 sisters, 2 nieces and a nephew also have celiac. We have 5 children, 4 daughters ages 12,8,5,3 and a son who is 9 months. We have had all of the kids tested except for the baby and no one has had positive blood work. I question whether or not some of them have issues with gluten however because of specific behavioral symptoms that have been mentioned here. My 5 year old daughter gets severe headaches, is tiny for her age (33 lbs) and is a terror. I never realized the extent of it until she started kindergarten this year and when I was filling out a "get to know you" form the teacher sent home, I found that the only things I wrote about were how to deal with her mood swings, anger, lack of cooperation, etc. I had a really hard time thinking of positive things to write about her. It was really sad. As I read some of these threads today I am thinking that I will definitely try her on a gluten-free diet to see how it affects her moods. Anyway, I am actually concerned about my 12 year old. I was hoping someone would have some similar experiences and could help me. She has had issues with wetting the bed since she was about 5 years old. She went through a period of about 2 years when she was completely dry at night but then she started to wet the bed again. We have looked for physical issues (none), psychological issues(none) and have simply decided that it will hopefully be something she will eventually outgrow. Currently the longest period of time that she can go without being wet at night is 1 week. Her daytime dryness is fine and we have tried timers and alarms and all of those devices. She also gets frequent bladder infections. Sometimes as often as every 2-3 months. We think those are linked to constipation which is also an issue. In short, as I have been learning and reading about celiac, it occurred to me that maybe the constipation is a symptom of celiac and possibly if she went on a gluten-free diet it would clear up and that would help to eliminate the bedwetting. Am I stretching? Do I have celiac on the brain? Anybody else with experience with this? We have done all of the usual physical tests to ensure her bladder and kidneys are normal-they were all fine. The only thing that has given us a measure of success is waking her up in the middle of the night to try to retrain her bladder. This does not always work though. If anyone has any type of experience with this, please share! Thank you!

Wow, you have your hands full!

First off, frequent bladder infections can be and often are caused by a short uretha (sp). Some females are just born with it and it can be inherited. I was having frequent bladder infections to the point where my doctor gave me antibiotics to keep in the fridge (we live out of town). Then he came up with the idea that Vitamin C suppliments would help.

So, he started me on 1000 units, time release a day, after a couple of months I was pretty much free of infections and only had two the first year. I am now down to 500 units, time release a day and keep it pretty much under control. This would be a reason for bed wetting, as you get frequent bladder muscle spasms with an infection.

I hope your daughter is soon rid of the infections. They really are awful to deal with.

On the other children. You don't say where you are from, however some people in the US are getting Genetic testing done so see if they carry the Celiac genes. Sometimes the regular Celiac pannel is not accurate until the disease actually kicks in big time. But the symptoms you describe, including behaviour is certainly possible for Celiac. I don't think the genetic testing is available in Canada yet through the health system.

my son wet his bed almost every night, we were told it was common in boys, he'd outgrow it ...blah blah.
Then he was diagnosed celiac at age 10 yrs and within weeks of going gluten free, he stopped bedwetting. I came to understand from other parents that celiac and bedwetting can go together...
there are other causes of bedwetting but this was our experience with it.
Sandy

That would be a dream come true for my 10 year old daughter. She hates wetting the bed. I have been changing the sheets every night and reluctantly she agreed to go back to wearing Good Nites. I feel terrible for her and I'm affraid it's going to start to affect her self esteem. Here's our story...briefly...

Thomas (8) diagnosed w/ apthous stomatitis, lactose intolerance (hydrogen breath test), double DQ2, acid reflux, positve celiac bloodwork and currently on a gluten challenge to prepare for biopsy

Haley (10) diagnosed w/ Hypothyroid, joint pain, allergies, acid reflux but Celiac blood work was negative

Our GP reccommends scoping Haley for sure if Thomas' biopsy is positive regardless of her negative bloodwork. She would be estatic to get rid of the bedwetting. We are seeing Dr. Guandalini on January 31st at the Chicago Celiac Research Center. I am going to have her read this thread because sometimes she feels so alone and that no one else has this problem. I would love to hear if anyone else has had experience w/ going gluten free and getting rid of bed wetting.

PS Our family practice doctor has Celiac himself and he said that just because the bloodwork is negative doesn't mean they don't for surely have it. From what I understand, you can catch it sooner when biopsied. Also, some biopsy proven Celiacs never had positive bloodwork because they were IGA deficient.

I do live in the US, so the tests are available. I am of the school of thought that if the cure if the kids are positively diagnosed is the diet then why not at least try the diet to see if it helps before doing a biopsy or additional testing. We are also self employed so it wouldn't hurt to keep an official diagnoses off of the medical records either. I remembered as I was reading these responses that I had an outpatient surgery when I was in 2nd grade to stretch my urethra. I also used to get frequent bladder infections as a child but did not have a problem with bed wetting. I had almost forgotten about that surgery. I suggested to my daughter today that the whole family go on the diet and she was not very excited about the idea. Even if we just do it for a month, I need to see if it affects any of the issues we are dealing with. I'm glad there are others who feel there may be a link between celiac and bed wetting. My husband's family is actually involved in a celiac research study through the University of Utah and the University of California at Irvine. Everyone has had blood work done and some with positive blood work have also had biopsy done. Both my MIL and my FIL cary one of the celiac genes. I have not called the study people to get the gene info for our family but I guess I should. Thanks for everyones input.

Hi!
Just a couple of thoughts - my daughter was never, ever dry at night and we figured that she was just taking her time although her twin brother was immediately dry at night even though he potty trained a little later. Camryn was also VERY constipated and never really presented with any other symptoms of celiac. Before she was diagnosed, the pediatrician suggested that the constipation could lead to lack of bladder control due to the amount of pressure on the bladder from the full bowels.

Anyway, as she became sicker and sicker with type 1 diabetes the bed wetting (and insatiable thirst) became progressively worse until we figured out what was wrong (that was only a matter of a couple of weeks). I am not even suggesting diabetes as that is not at all subtle and you would certainly notice other issues such as massive fatigue, weightloss and a painful, unquenchable thirst (if she does have any of those syptoms, get her to a dr. immediately). Once we got Camryn started on insulin and onto a gluten free diet the night wetting, and the constipation went away. I don't know what caused what but just thought I would pass it along.

I hope you find some answers - I too am of the school of thought that trying the diet can't hurt. I also understand about resistance, I am trying to convince my non-celiac son to go gluten free (at home) for the sake of his sister and it isn't going over well at all. Good luck!

B.

You may not have heard of Elimination Communication/Natural Infant Hygeine/Infant Potty Training, but practicing this gentle method of early toilet learning was one of the things that tipped me off to my 11-mo.-old's gluten sensitivity. Basically, when she consumes gluten she wets her pants a lot and sometimes looks completely surprised when it occurs (even when she doesn't signal me that she has to go, there is usually a change in her posture, facial expression, activity, etc. whne she does). I know now that a gluten exposure means we go from 1-3 wet pants a day (our current range) to 5-12. From mothers on an EC list, I have heard that the same often happens with other food sensitivities. Someone theorized that if it's throwing off the gut, it may also affect muscles in the pelvic floor. Make sense? Anyway, I recommend investigating diet for any child that has incontinence issues--it's worked for us, and given us other benefits I hadn't expected!

Your daughter sounds very like my daughter. One thing I think is important to realize is that there may never be an official diagnosis of Celiac. There are so many people that have gluten sensitivity or intolerance that will never be diagnoses. The only real way to see if you are affected negatively by gluten is to go on the diet. You have to be vigilant and go for a while. I would suggest a full month. I tried the diet on my daughter but gave up after 2 weeks. But I tried again and after 3 weeks there was significant impovement.
My daughter, like yours, has experience severe constipation from 2 years on. She is 8 now and a couple months ago lost almost all control over her bladder. The doctor says this is because having a bowel movement is so painful they refuse to release the bladder because that also relaxes the sphincter. They would rather just leak their urine than go. I have had my daughter on the gluten free diet since July. Her back pain went away almost immediately however the constipation has not relented. We even checked out Tetherd Cord Syndrome because constipation, back pain, and bladder control problems are typical of this. I am not trying lactose free, gluten free. I haven't been able to commit to such a strict diet for such a small girl but she's not getting better fast enough for me. If they are undiagnosed for a while I read that they may never be able to process dairy again.
My husband and my son are also gluten-sensitive. So my whole family is on the diet. I want to have another baby and its important to be gluten free during pregnancy and breastfeeding if gluten problems run in your family.
Don't give up. It's hard and frustrating and doctors think you are crazy. I have had to change pediatricians numerous times because they give up on my child. You are really her only advocate. And most medical doctors are not trained in nutrition and won't listen if they can't do a test.
Good Luck. If you find anything useful, let me know.

my sister has been struggling with this same issue with her 6 year old son. she took him off all dairy and it went away within a day or so. her doctor completely said they are unrelated--but she found articles and it is obvious that it was dairy. just another idea if it doesnt go away after trying gluten-free.