Toddler With Chronic Constipation...please Help

[gemlechner]

O.k so I know the best thing to do is bring my baby to a GI dr. but after talking it over with her primary we decided before she goes through any crazy tests we should try a gluten free diet. My poor baby has been constipated since she was 8 months old we have tried everything from  senna, prunes, tons of juice & enama's all of which relieve the constipation at the time of use but it always comes back. To make a long story short she  also has low iron and she has horribe tooth enamel...oh and there is always snotty looking stuff in her very hard very large poop.  2 months ago (when we discovered her tooth decay) we cut out sugar and gluten or anything that would stick to her teeth or turn into sugar and after about 2 weeks of that her constipation was gone for the first time ever......slowly I started giving her pasta and pancakes like once or twice a week....and for a few weeks she was still pooping fine till all of a sudden after adding gluten back in she is constipated again. Thats why her dr. suggested we try cutting out gluten and see if thats really it.... My heart is breaking we have only been gluten free for about a week  this time and there is no changes I know it takes longer then that..I am writing this because is there anybody else out there with a similar story...Everyday I question her symptoms and compare them to everything I read on line. I though maybe it could be yeast then I though maybe she has something wrong with her spine...I know time will tell but It's hard to see my baby struggle to poop....does this sound like anybody else???? Any advice would be greatly appreciated.

[kareng]

I don't understand why your doc wouldn't at least do the basic celiac blood test before advising you to go gluten-free? The tooth decay on a small child is a real warning sign of Celiac. But, without a " real" diagnosis, you will have issues with school, doctors, etc. I am so sorry your doctor is uninformed. This just makes it harder for you.

[gemlechner]

  On 9/29/2013 at 2:33 AM, kareng said:

I don't understand why your doc wouldn't at least do the basic celiac blood test before advising you to go gluten-free? The tooth decay on a small child is a real warning sign of Celiac. But, without a " real" diagnosis, you will have issues with school, doctors, etc. I am so sorry your doctor is uninformed. This just makes it harder for you.

It really does, thanks for your sympathy. I guess thats why I am trying to educate myself as best I can.

[kareng]

  On 9/29/2013 at 2:41 AM, gemlechner said:

It really does, thanks for your sympathy. I guess thats why I am trying to educate myself as best I can.

Maybe you could give her a little gluten each day and on Monday insist you get the basic blood test. I don't know how old she is, but some babies/ toddlers aren't making enough antibodies to show in a test. But some do...so I think it would be worth a try.

[nicolebeth]

We did go through something similar with my second son. He had fissures as an exclusively breastfed infant (which definitely seems odd, looking back--obviously, I was eating something that didn't agree with him and caused much straining). And, then, despite using "elimination communication" (which was successful with his brother), he was in so much pain while pooping that he could go only standing up (necessitating diapers after several months in underwear). This was when he was around 21-22 months. The doctors recommended prune juice, other fiber, etc.

 

We decided to try gluten-free since it helped his older brother (and celiac runs in the family). This was under the guidance of a GI (who will diagnose him, at most, with only non-celiac gluten intolerance). He has not had fissures. And has not been complaining about his stomach being in pain the same way he was around age 2.5. (I thought his blood work was interesting--low total IgA, low Vitamin D, and low iron, but the GI said that his low total IgA wasn't THAT low, every kid his age has low iron, and every kid in the NE has low Vitamin D. In contrast, my son did not have low iron or vitamin D as an infant.)

 

I would do blood work. It's not always accurate for babies and very young children. But, I agree for school it would be better to know something--whether it's celiac or non-celiac gluten intolerance. Neither of my children has needed a doctor's note at either of the schools--but, the schools are private, so that might make a difference. I am pretty sure the GI would sign off on NCGI, though.

 

Good luck!

[tshep]

My daughter's main symptom was also constipation. She is three and was just diagnosed about a month ago. We have been 100% gluten free since then, and still having some issues with her bowel movements.  She is at least no longer straining so hard that she is bleeding, so I am taking comfort in the small improvements.  How often does she have a movement? If she is managing to still poop once a day, or at least every other day, and it is still very hard, that sounds like a definite red flag for celiac.  But like the other posts, it will be really helpful to have a true diagnosis to be sure how to proceed, and also for the peace of mind of knowing you are doing the right thing.  Hopefully you can find a doctor that will be able to provide the care that you need for your little one, I know from experience it is so scary.  Especially awful when you are scared to feed your own child!  My daughter's GI has been great to endure my HOST of questions, and has referred me to a dietician that has really been a blessing.  I would highly recommend working with someone who can help you navigate all the craziness. Best Wishes!

[gemlechner]

  On 10/9/2013 at 3:54 AM, tshep said:

My daughter's main symptom was also constipation. She is three and was just diagnosed about a month ago. We have been 100% gluten free since then, and still having some issues with her bowel movements.  She is at least no longer straining so hard that she is bleeding, so I am taking comfort in the small improvements.  How often does she have a movement? If she is managing to still poop once a day, or at least every other day, and it is still very hard, that sounds like a definite red flag for celiac.  But like the other posts, it will be really helpful to have a true diagnosis to be sure how to proceed, and also for the peace of mind of knowing you are doing the right thing.  Hopefully you can find a doctor that will be able to provide the care that you need for your little one, I know from experience it is so scary.  Especially awful when you are scared to feed your own child!  My daughter's GI has been great to endure my HOST of questions, and has referred me to a dietician that has really been a blessing.  I would highly recommend working with someone who can help you navigate all the craziness. Best Wishes!

She doesn't have a bm unless given an enama or senna tea. I think we have been gluten-free long enough but I think the prob now is she is scared to go. I'm trying everything to help her go without using mirilax because that stuff is really bad. But I'm starting to get desperate. I see her everyday having the erge to go and then she fights it. So I feel that her constipation could be gone if she wasn't scared. Made an appt to GI but 1 month away.

[gemlechner]

  On 9/29/2013 at 5:46 PM, nicolebeth said:

We did go through something similar with my second son. He had fissures as an exclusively breastfed infant (which definitely seems odd, looking back--obviously, I was eating something that didn't agree with him and caused much straining). And, then, despite using "elimination communication" (which was successful with his brother), he was in so much pain while pooping that he could go only standing up (necessitating diapers after several months in underwear). This was when he was around 21-22 months. The doctors recommended prune juice, other fiber, etc.

 

We decided to try gluten-free since it helped his older brother (and celiac runs in the family). This was under the guidance of a GI (who will diagnose him, at most, with only non-celiac gluten intolerance). He has not had fissures. And has not been complaining about his stomach being in pain the same way he was around age 2.5. (I thought his blood work was interesting--low total IgA, low Vitamin D, and low iron, but the GI said that his low total IgA wasn't THAT low, every kid his age has low iron, and every kid in the NE has low Vitamin D. In contrast, my son did not have low iron or vitamin D as an infant.)

 

I would do blood work. It's not always accurate for babies and very young children. But, I agree for school it would be better to know something--whether it's celiac or non-celiac gluten intolerance. Neither of my children has needed a doctor's note at either of the schools--but, the schools are private, so that might make a difference. I am pretty sure the GI would sign off on NCGI, though.

 

Good luck!

Did The GI make you do an endoscopy? or anything like that? And once he was gluten free are his symptoms gone? How well does he tolerate corn? I think her constipation could be gone but she is afraid to go, made GI appt but 1 month away. Thanks for the advise!

[nicolebeth]

  On 10/10/2013 at 1:23 PM, gemlechner said:

Did The GI make you do an endoscopy? or anything like that? And once he was gluten free are his symptoms gone? How well does he tolerate corn? I think her constipation could be gone but she is afraid to go, made GI appt but 1 month away. Thanks for the advise!

This GI did not make us do an endoscopy. We're not ruling it out, but want to wait until my son is old enough for it to show up, if that is the case. Or, see if he gets to the point that he accepts being gluten-free. (We don't have very good compliance with him since he's 3.5--his symptoms don't seem severe when he begs bread off of another child when we're not home, so that's good.) We haven't seen any fissures. He still doesn't want to use the toilet (but he says he's still little and that he's not ready).

 

My son does eat corn. I don't tolerate it, but I haven't noticed that in him. It doesn't seem to digest, but he doesn't complain about his stomach when he eats a ton of corn on the cob or corn chips.

 

My older son used to have 3-5 bowel movements a day--loose--and an x-ray showed him to be very constipated. He didn't realize his stool was abnormal until he stopped eating gluten. He did use Miralax for about 6-8 weeks? My mom has noticed that his stomach is no longer distended, the same with my younger one. Even if this is "only" non-celiac gluten intolerance, I think this is the right decision for our family.

 

By the way, if you're doing celiac testing, your daughter needs to be eating gluten, and not just here-and-there. (I'm sure someone said that above, so sorry if I'm repeating! The tests will come out normal if gluten-free.)

 

Good luck!

[jazzberry917]

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