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Undiagnosed 20 Month Old On gluten-free Diet - Bowel Issues
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OK so this is about my son's poop. Sorry if tmi but we all know it's a popular subject here...

I self diagnosed and have been gluten-free for about 3 years. Shortly after starting solids, we noticed my LO was having really awful, pale, stinky and grainy BM's. He was also pooping really frequently and got horrible bleeding rashes and sores on his butt. No matter how often we changed him. If we left him without his diaper on, we saw he'd poop every half hour or so.

The daycare he's in has a gluten-free option (food is catered). We signed him up and his poops and rashes got better immediately ( well, within a week or so).

He then transferred from the infant room, where he was fed in a high chair,to the toddler room where the kids sit side by side at the table to eat. Our little guy is a big eater and he'll steal food...

So over the past several months, since he switchedto the toddler room, he has started getting nasty poos again. Not as bad as before he went on the gluten-free diet but still pretty loose and very very foul smelling. He'll have 3 or 4 bm's a day. And sometimes his bum gets quite red.

We've asked the caregivers if it's possible he's grabbing the other kids' food and ingesting gluten. But they get all defensive and swear up and down that's impossible because they are always watching him(hmmmm yeah, right ).

Anyway - I'm looking for advice. If you were me would you suspect gluten is the likely culprit here? His bm's are clearly abnormal ( the caregivers make comments about them all the time). Or would you suspect something else? And if so what should I be on the lookout for?

He loves to eat and is growing like a weed (30 lbs at 20 mos) so this isn't stunting his growth. But he just isn't *right* if you know what i mean.

Any suggestions would be welcome.

Thx

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He may be getting cross-contamination from the toys that other children have touched...or even from the table surface. Also, he may be experiencing additional food sensitivities. You might try eliminating dairy, soy, and oats to see if any of these foods are causing his problems. These are the common trouble foods for people with celiac, but he may have a food sensitivity that is uniquely his.

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Thanks for the input.

He doesn't eat oats but deffo he has dairy and soy. He never had issues with them before (when in the infant room at daycare) but anything's possible. Things do crop up over time. I'm just not sure if the catering company can accommodate such a restrictive diet. And daycare policy says I can't bring food in for him. Ugh. But I'll investigate what the catering co can do.

He does eat a lot of fruit (bananas, oranges, apples,strwaberries, etc. ) we were afraid those may have been contributing to his poop issues but a few weeks after cutting those way back we're still having the nasty poops.

*le sigh* who knew I'd spend so much time wishing for my son to have "normal" bm's ... lol

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My son has *never* had a normal bm. When he eats gluten, things are BAD, but *all* food causes problems for him.

If your son has a dietary need, either the daycare has to provide safe food or you will bring in what is safe for him. When it comes to a child's health, there should never be any agruments about their diets.

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Well after having him home with us over the long weekend, eating strictly gluten-free foods prepared by me, we were down to two normal looking and smelling bm's today. This has happened over other long weekends. But two day weekends don't seem to be enough time for him to get back to normal.

I guess he must b getting cc'd somehow. Friday he had 5 bm's. And they were huge and stinky.

Don't know how to get the daycare to take this seriously without a diagnosis. My gp won't take me seriously. So there's little hope daycare will.

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Not sure how seriously anyone takes these things without an official diag - or even a diag- I found out yesterday that my son was playing with playdoh at school! WTF!

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Not sure how seriously anyone takes these things without an official diag - or even a diag- I found out yesterday that my son was playing with playdoh at school! WTF!

My son can play with playdough and be just fine. Now if he would eat it, that is a different story.

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my son is just going through all the test at the moment and a very strict gluton, wheat, soya, dairy, eggs free diet and well im having similar problem that the school want even set up a meeting with us about his school dinners till they had letter from gp, gp want write letter as results from test aint back and this diet is just precaution given from consultants from hospital and gp has not recieved notes from this.so i have to take pack lunch in for him but they start moaning as he isnt getting all food groups as most of his lunch is fruit and veg any ideas wat i can give him

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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