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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!

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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.

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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

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my son wet his bed almost every night, we were told it was common ion biys, he's outgrow...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 cause 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.

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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.

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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.

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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.

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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!

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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.

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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.

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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!

I have a 12 year old also who has been bedwetting since 4 years old. He also has Eczema and has had alot of cavities compared to my other 4kids (who have had none). Researching Celiac disease for myself (I have a looong list of symptoms), mademe start thinking he may have it too and could it be the cause for all his symptoms? Nothing has worked for him either, not even medication.

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Considering the family history, it is likely that gluten is the culprit behind all that you've been experiencing with your children. Though they may not be thrilled with the prospect of going gluten-free, they may be surprised at how well they do on the diet. I'd definitely give it a shot.

As a side note, I would recommend also supplementing with D-Mannose for the child that is getting frequent bladder infections. It quite often stops the infection in its tracks. Generally it takes about 10 minutes to start working. http://www.associatedcontent.com/article/3461/dmannose_the_natural_cure_for_bladder.html

My daughter is sensitive to a lot of foods and chemicals/medications. The D-Mannose has been wonderful to have when we've dealt with bladder infections. Our doctor was seriously impressed that the bladder infection cleared up so quickly (the first infection we had him dx the infection and then went back in to make sure it was gone). And our daughter was just happy the pain went away almost immediately.

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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
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    • A few science-y articles to help explain..... About Lectins.....plants make lectins to protect themselves from being eaten by predators and are a source of inflammation......  Brown rice has lectins in the hull.  White rice has that hull removed. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1115436/ Then there's Sulfite Sensitivity that some Celiacs develop..... http://www.thepatientceliac.com/tag/celiac-disease-and-sulfite-intolerance/ Sulfites naturally occur in some foods, like cruciferous vegetables (cabbage, cauliflower, broccoli), and garlic, eggs, fermented foods (wine), and are added to processed foods as preservatives.   Because our gastrointestinal tract is inflamed or damaged, we may not correctly process Sulfites which can cause MORE inflammation..... https://www.ncbi.nlm.nih.gov/pubmed/17143057 Sulfites occur naturally in meat, too.  Pork is naturally higher in sulfites than some other types of meat, like lamb or beef liver.  However I was horrified when I discovered this: Pigs are fed a high sulfur diet so the meat stays fresher looking longer in packaging!   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5243960/#!po=93.4211 I've always had problems with any kind of pork, bacon, ham, chops, roasts.   I make sure to purchase grass fed beef, bison and lamb, and free range chicken and eggs. I have Type IV Hypersensitivity to Sulfites.  I can't take any medications with sulfa or thiols in them.  I get sick if I eat high sulfur foods like broccoli and garlic and pork.  Molybdenum is helpful. You're not alone. It's not your imagination.   Hope this helps!     
    • Thanks for info on the veggies and greens. I'll stick with the kale and spinach for now.  Maybe romaine, but not sure what to put on it. I was wondering whether to have any vinegar right now, just because it seems like a very tangy, sour ingredient on the tummy. I might stop all spices and herbs to start, but if I use any, I'll just use what I am growing.  And definitely no garlic or onion (bummer!).  No tomatoes - this is hard for an Italian, lol!  No potatoes for my Irish, no tomatoes or garlic for my Italian cravings.  My husband used to joke my blood was tomato sauce.  I love fresh tomatoes, pizza sauce, pasta sauce, putting tomato sauce in soups, and so on.  So, this will be interesting. And I used to cook with a lot of red pepper flakes and garlic.  I was thinking eggs will be the first thing I add back in because I ate a lot of those when I was at my worst, before I found out I couldn't have gluten. Eggs seemed to be the easiest on my stomach.  I am thinking I am going to be okay with them, but to give them up for a week or two, I could probably do.  But that will probably be my first add in.  I wanted it to be dairy, but I think eggs would be more practical.  Crab meat in a soup or with eggs sounds good. I will jot that down.  I am thinking things like chicken, turkey, and veggies that have not seemed too harsh on me, like carrots and green beans.  Maybe a little rice, although I'll see if that tends to bloat me or not.  I saw blueberries as low FODMAP fruit and was thinking if I have a sweet craving I could have a few spoonfuls of blueberries.  I like zucchini a  lot, but so far it has bloated me, and I am hoping once my stomach heals I can go back to that (same with broccoli and cauliflower).  But for now, it couldn't hurt to avoid anything that seems to bloat.  Do you know if canned black olives would be an okay snack? I am working on my grocery list.  Hopefully by Thurs or Fri I will be starting this.  I need to call the company that makes the beta blocker I am on because that was one more concern I was having.  I tried it for a week back in early Dec and could have sworn it did not agree with my stomach.  My dr seemed to doubt me.  I stopped taking it.  I went back on it mid January, and little by little my stomach has been getting worse and worse.  Could be other things, but I think I better call the company to see if there is gluten, corn or soy in it.  I did already check and supposedly it is gluten-free, but I seemed to get a few run-around answers before I got that one.  But even if there is corn or soy in it, that could be enough to be a problem. You wouldn't think one tiny pill a day could cause such harm though.  If there was gluten, I could see it.  But I guess even a tiny amount of soy or corn can do the same thing?  I don't get as severe or as many problems with soy or corn as I do with gluten.  But it's still not good at all though.  Now I am hoping i just don't get sick of chicken or carrots, etc.  I started to get a little sick of eggs at one point, but that has gotten better.     Oh, and I am not going to do pork because I am not sure if that bothers me or not but would a little beef here or there be bad? 
    • That's a great idea to roast and cook chicken and veggies first before putting in soup to add flavor.  Of course I am starting this planning now, as a heat wave is approaching this weekend, and I'll be making hot soup, lol!  But whatever. I am making out a meal plan and shopping Wed or Thurs and then starting.   Anyone know if canned olives (the black ones) would be an okay snack? 
    • That was an interesting  article.  Just seems like though that everything is a two edged sword.  On the one hand, fiber is good - on the other it is bad if you are in a flare with MC.  It all seems so confusing.  And every time I think I have a simple diet figured out, I get told to eliminate more foods.  Like my potatoes and sweet potatoes.  They are kind of a staple for me.  Like the only thing I look forward to at meal time that I thought was "ok" for me.  And my canned peaches for breakfast.  In other news, I have in the last several days gone straight from watery D to constipation so I have cut my budesonide down from 9 mg a day to 6mg.  Its weird how there is never any gradual shift from D to constipation or vice versa.  Its one or the other.  I haven't seen anything resembling normal since February. 
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