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My 12 year old daughter who has celiac (diagnosed 5 years ago)  just had l bloodwork done last week.  She has been having stomach aches.  Suspected she may have been glutened.  Doctor wanted to check antibodies and also her iron levels, cbc etc...She has been gluten-free for 5 years.  Her bloodwork is "clean" for gluten.  However,  her alkaline phosphatase level is low.  She has stopped gaining weight over the past 2 years.  Really a struggle.  Gastro claims since she's not anemic, vit d level normal says "it is not malabsorption".   Her  AP level was 91 in October of 2015 and 98 Sept 2016.  She has not or does not appear to be going thru puberty.   Different docs, different answers.   Gastro is worried, endochronologist says not a big deal (yes we had growth hormones checked at hospital and body is producing them), regular pediatrician thinks she's just a skinny kid (feed her well).   She still has stomach symptoms.  I posted last week and got great responses, however that was before the bloodwork.  Very worrisome since we only have so much time before puberty hits and growth stops.  BTW, regular pediatrician wants her to eliminate dairy for 2 weeks to see if she feels better. (Not a problem)  Nutritionist doesn't agree....arrrrghhhhhh

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So, the good news is that her celiac panel is clean!  You both are doing a great job.  

Have other autoimmune disorders been ruled out?  Liver, thyroid or gallbladder issues?  Do not give up.  Something is probably wrong.  Here is my story.  I could have sworn that my 19 year old niece had celiac disease.  She is tiny (under 100 lbs.) and went through puberty late.) But she did not.  Turns out a pill cam revealed Crohn's Disease (found at the very end of the small intestine and yet she did not display traditional Crohn's symptoms).   Not saying your daughter has Crohn's, but keep looking. Thankfully, my SIL kept being persistent.

 

 

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17 minutes ago, ironictruth said:

What tests were run? Myself and others only test positive to DGP which is around 9 years old. 

My old GI doc does not use that test in his celiac panel. 

My new one does! 

Excellent point!  The DGP is supposed to be better at measuring gluten exposure over the TTG.  

Like you, I only test positive to the DGP even in follow-up testing.    Three cheers for your new celiac-savvy doctor!  

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Ok, so I guess I'll go over the bloodwork and see if they did the DGP?  Or request it?  Maybe somehow she is still getting glutened (she was diagnosed with celiac, by endoscopy 5 years ago).  Or perhaps it is another autoimmune causing malabsorption.  Her iron levels, vit D, etc were all good.  Pressing doctor to do more tests.  Why are the doctors sooooo reluctant to test!  I have insurance....

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If it is not malabsorption, maybe she is just a skinny kid.  How is she in the weight chart for kids?  Mine was always in the 5% bracket up until she was six.  Then it increased to 25% and at 15 years of she is at 50% and plays water polo and track.  That girl is all muscle!  

What symptoms is your daughter having?  Have you kept a food chart?  Do certain foods set off her symptoms?  You can develop food intolerances at anytime.  

Celiacs should be checked for thyroid antibodies, and antibodies for Type 1 Diabetes (both could explain inability to gain weight) because it is very common (possibly same genes as celiac disease).  A non-functioning gallbladder can too (usually symptoms hit after eating and you are okay when food is not in your system).

remember, I am not a doctor, but just a mom.  My heart goes out to you both!    

 

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Oh she was diagnosed with villous atrophy? Yes, i would suggest DGP test ASAP. Cycling lady mentioned hers was elevated after a glutening so my new GI ran mine 2 weeks ago and bingo! I have no clue what did it but am new at this. At least then you will know if something is sneaking in. 

Gallbladder too, had that one. Painful. Was the pancreas looked at? Celiac can lead to EPI...

And total long shot, but some wacky diseases like intestinal tuberculosis or whipples disease can cause systemic issues. 

My AP would go a tad low, then up, the low, then up. My D was low, then up. My ferritin was low, then up, then low. My E was low 6 weeks ago and outstanding now. My RBC count was a bit low 3 weeks ago, awesome now. My protein was low 3 weeks ago awesome now. I have no villous atrophy on my recent scope but "marked focal duodenditis" and elevated antibodies and I am in a ton of pain. Afraid to eat. I pretty much mainlined gluten-free nutrition drinks for 10 days recently.

So I think, it does not follow that just because her vitamin D is fine that she is not malabsorbing. If anything, I would think it may be a scenario of little glutenings, healing, another glutening, etc. 

 

 

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