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my3yo

About My 3 Y/o Son

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I have a 3 y/o son who has some strange symptoms and I am wondering if he might be sensitive to gluten and wanted some opinions.  He was tested last fall for only a couple allergies (environmental) and is allergic to dogs, cats, and dust mites...no foods were tested.  I have always limited his dairy because I am lactose intolerant (trying a gluten free diet to see if that is really my problem).  As he's gotten older I've increased his dairy and he seems to tolerate it.  But  he has constant loose stools.  His pediatrician said its not a problem but it is horrible smelling and he farts all the time.  I believed the dr. when she said not to worry about the loose stool but now I have 7 mo old who already has formed stool most of the time and my 3 y/o has never (maybe rarely) had formed stool.  Also, he has a urinary problem I think.  He will sometimes pee every 10-30 minutes all day long.  I've read that gluten can cause damage to the bladder and cause frequency and urgency symptoms.  The doctor checked him for diabetes because of his frequent urination and he does not have an infection.  He also has dry/rashy skin almost always but he has red hair and very fair skin so I just figured he had sensitive skin.  Also I've read that gluten can cause "flabby muscles" and my sister has always told me that his hands seem to have low muscle tone and always seem loose/floppy.  I don't have anything to compare it too.  I think his feet are floppy and he tends to be slightly pidgeon toed and the doctor said that the muscles with improve with age and correct itself.  He was also anemic at 1 year old and takes an iron supplement now.  I don't know, could be a lot of unrelated coincidences and I could just be a crazy mom thinking something more is wrong but I'm just not sure and thought someone here might have more insight.  I thought about just putting him on a gluten free diet for 2 weeks to see if his stool hardens.

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I don't think you are a 'crazy mom' at all. A lot of the symptoms you are talking about are signalment of celiac disease in children. I would request a celiac panel for him. Be sure he is eating gluten though otherwise it could be a false negative.

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I too would have him tested before trying the diet because if you want to test later, you'll have to reintroduce gluten for a few weeks for accurate testing- two months if he has been gluten-free for a long while.

When requesting testing, ask for:

TTG IgA and tTG IgG (most popular tests)

DGP IgA and DGP IgG (these are the best tests for kids, by far)

Ema IgA (tends to be positive in more advanced cases)

Total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

The endoscopic biopsy is also an option

Be aware that celiac disease tests are not as reliable for very young children so there is a greater chance for false negatives. False negatives can happen if testing after going gluten-free too.

If your 3yo does have negative results, it old be non-celiac gluten intolerance (NCGI) which has all the same symptoms of celiac disease except for the villi damage. It could also be due to false negatives. If he is negative, try the gluten-free diet anyways but give it a minimum of two months (six is much better) before you decide if it has helped. There are many symptoms that can take months to improve and sometimes BM's are slow to change. Keeping a symptom and food journal will help keep track of the changes.

Good luck!

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I talked with my husband and he doesn't see a reason to get our son tested.  He thinks that we should just put him on a gluten free diet and if he gets better that is enough of a reason not to have gluten.  Is there really a need to get tested?  If he is celiac vs. gluten sensitive, the diet is the same.  Is it important for other reasons to have the diagnosis officially?  I'm just wondering because I really don't know what to say to my husband.  Thanks for all your advice so far!  I appreciate it!

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Once you eliminate gluten, it's very difficult to test for celiac down the road. As pps said, if it is truly celiac, a formal diagnosis is important for school accommodation. But it could also help ensure that your DS adheres to the diet as he grows up and makes his own food decisions.  We have a relative who decided that her toddler had problems with gluten many years ago (and the child probably did have either NCGI or celiac), but now that he's an almost teenager I don't think he takes it as seriously as he would if he'd been told that he had a disease. I'm not that familiar with how sensitive people with NCGI are to varying levels of gluten, but with celiac, your child must ensure total lifelong gluten elimination, which isn't a walk in the park. Impressing on our DD (and our friends and relatives who eat with her) the gravity of the diagnosis was one of the reasons we wanted biopsy confirmation.

 

One other benefit of getting a formal diagnosis is insurance coverage following diagnosis. That covers follow-up testing to make sure the antibody levels are improving and, depending on your carrier, it might also include dietary counseling as you begin the gluten-free diet. Our GI practice also  screens celiac kids for other associated autoimmune diseases, although I'm not sure if all GIs do that.

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I would also recommend getting him tested. Though a blood draw is no fun with a little kid, if the results give any indication of celiac it could turn out to be really important later to have proper follow-up covered by insurance.

As for the urinary frequency issue, my daughter and I both had that. We'd both have to pee several times an hour, all day long. For me this went on for over 20 years, and like your son I was checked for diabetes and infections (many times) and always had normal results. My daughter had traces of blood in her urine several times, with no infection, and doctors could never figure out why. She was diagnosed with celiac last summer, just after she turned four, and I had a confusing mix of test results but went strictly gluten-free along with her. The urinary frequency stopped for both of us within a week, and it hasn't returned.

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Thanks so much for all your help so far!  I talked with my husband again and am planning to make an appointment with the pediatrician in the next few weeks to talk to her about this.  I have a feeling we will be referred to a GI specialist if she thinks I'm on to something and I don't know how long that will take.  Other than the tests mentioned above is there anything specific I should request, ask or mention symptom wise to her.  I'm going to try to write everything out so I don't forget stuff.  

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I would also recommend getting him tested. Though a blood draw is no fun with a little kid, if the results give any indication of celiac it could turn out to be really important later to have proper follow-up covered by insurance.

As for the urinary frequency issue, my daughter and I both had that. We'd both have to pee several times an hour, all day long. For me this went on for over 20 years, and like your son I was checked for diabetes and infections (many times) and always had normal results. My daughter had traces of blood in her urine several times, with no infection, and doctors could never figure out why. She was diagnosed with celiac last summer, just after she turned four, and I had a confusing mix of test results but went strictly gluten-free along with her. The urinary frequency stopped for both of us within a week, and it hasn't returned.

 

Thank you for mentioning the urine frequency symptoms.  My husband thinks he is just waiting too long to go to the bathroom (and I agree with this at times) but there is no reason he should have to go to the bathroom that often.  We already limit his fluids per the pediatrician as that was all she recommended we do when he was negative for diabetes.  Today he went to the bathroom at least every half hour and leaked into 3 pairs of underwear.  Maybe this is his issue.  The only thing that doesn't make sense is sometimes he doesn't seem to have the frequency.  Sometimes he'll go a week and do well and hold his urine for 3-4 hours...maybe he has less gluten during these times?

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my3yo, I'm talking way out of my expertise here, but on the urinary frequency issue, you might check out these two articles. Some very reputable doctors have speculated that there's an association between constipation and bedwetting and wetting accidents: 

 

http://parenting.blogs.nytimes.com/2012/06/01/when-bedwetting-isnt-an-accident/?_php=true&_type=blogs&_r=0

 

http://www.slate.com/articles/life/family/2012/03/bed_wetting_the_simple_cause_your_doctor_probably_missed_.html

 

Of course, in some kids, constipation could also be a symptom of celiac or gluten intolerance, so this could all be part of a larger picture. But either way, it seems like your doc should be trying to get to the bottom of the urinary frequency issue, and not just tell you to limit his fluids (that advice sounds kind of unusual to me).  Hopefully a GI can look at all of these symptoms and help you find an answer!! Best wishes.

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my3yo, I'm talking way out of my expertise here, but on the urinary frequency issue, you might check out these two articles. Some very reputable doctors have speculated that there's an association between constipation and bedwetting and wetting accidents: 

 

http://parenting.blogs.nytimes.com/2012/06/01/when-bedwetting-isnt-an-accident/?_php=true&_type=blogs&_r=0

 

http://www.slate.com/articles/life/family/2012/03/bed_wetting_the_simple_cause_your_doctor_probably_missed_.html

 

Of course, in some kids, constipation could also be a symptom of celiac or gluten intolerance, so this could all be part of a larger picture. But either way, it seems like your doc should be trying to get to the bottom of the urinary frequency issue, and not just tell you to limit his fluids (that advice sounds kind of unusual to me).  Hopefully a GI can look at all of these symptoms and help you find an answer!! Best wishes.

 

Thanks for the articles.  I found them very interesting.  I think I'm going to just have to talk with his pediatrician about everything.  I wouldn't guess he is constipated as he usually has a bowel movement 1-2 x per day and they are loose.  I do know that when people have partial bowel obstructions they sometimes don't know because loose stool can still move around the obstruction so I guess he could be constipated and the articles specifically mentioned that they didn't suspect constipation.  I just feel something is not right and my search for bladder answers led me to suspect gluten but now maybe its just this.  Hopefully we get some answers. 

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