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Concerned toddler mom

Test results for 2.5 year old son

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My 2.5 year old has had weight issues since the age of 1. He has gained very little weight since then and has completely fallen off his growth curve and had been diagnosed with failure to thrive. 
His pediatrician has been concerned enough to put him through a full cardiac workup and has completed lab work multiple times. 
My son has chronic diarrhea, his stools are very rarely formed, he is so thin that his lymph nodes are visible and palpable in his groin area and his abdomen gets more and more distended throughout the day. We had a second panel done this past December. A pediatrician filling in for his normal peds sent me an email stating all results are normal. I continue looking at them and trying to decipher what would be flagged as a positive for celiacs. 
I have attached the results below. He is still young, so I am not sure what to do at this point. Looking to see if anything sticks out to you all.. I have placed a call to his original PCP. 

celiac testing 12.23.17.JPG

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5 hours ago, Concerned toddler mom said:

My 2.5 year old has had weight issues since the age of 1. He has gained very little weight since then and has completely fallen off his growth curve and had been diagnosed with failure to thrive. 
His pediatrician has been concerned enough to put him through a full cardiac workup and has completed lab work multiple times. 
My son has chronic diarrhea, his stools are very rarely formed, he is so thin that his lymph nodes are visible and palpable in his groin area and his abdomen gets more and more distended throughout the day. We had a second panel done this past December. A pediatrician filling in for his normal peds sent me an email stating all results are normal. I continue looking at them and trying to decipher what would be flagged as a positive for celiacs. 
I have attached the results below. He is still young, so I am not sure what to do at this point. Looking to see if anything sticks out to you all.. I have placed a call to his original PCP. 

celiac testing 12.23.17.JPG

Welcome!  

I am sorry that your son is so ill.  

The two celiac tests given are negative (TTG IgA and DGP IgG).   The IgA that is elevated is Immunoglobulin A which, when used in celiac disease testing, acts as a control test to see if any IGA related tests actually work.  Outside of celiac disease testing,  elevated Immunoglobulin A can mean that something autoimmune is going on.  (Mine is elevated too).  You would need to talk to your doctor about the elevated IgA test.  He is definitely not IGA deficient and the TTG IGA in theory should be valid. 

I have biopsied confirmed celiac disease and the only elevated celiac antibodies test I have had (even in follow-up testing) is the DGP IgA.  The other tests are good, but do not catch all celiacs.  Then there are some celiacs who are seronegative.  Very common in children that young.  They are just too young to develop a lot of antibodies yet.  Maybe he does not like to eat a lot of gluten.  All celiac testing requires a person to be on a full gluten diet.  Not sure how much that is for a toddler.  

Ask for the rest of the panel: DGP IgA, TTG IgG, and the EMA.  If negative, consider a GI consult.  An endoscopy may be in order.  He could be one of the 10% of celiacs who are seronegative.  In that case, the endoscopy can help diagnose.  That is what they did before they invented blood tests.  It can also help rule out other non-celiac issues.  

This is pretty far out there, but there is a teen girl named Nicole who has celiac disease.  She was not getting well on the gluten-free diet.  Turns out she had a congenital intestinal issue too.  Not saying this the cause of your son’s issues, but Nicole’s doctors just though she was faking it.  Seriously.  She is now doing really well.  She was featured in Allergic Living Magazine, so she is for real.  For others reading this, watch her two You Tube Videos.  

https://www.allergicliving.com/2017/12/14/celiac-disease-gluten-symptoms-linked-to-eating-disorders-even-anorexia/

Why am I sharing this with you?  Please keep advocating for your son.  He may or may not have celiac disease, but something is wrong.   ?

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Thank you for your prompt reply! I will certainly follow up with that elevated Iga, his TSH has been on the high end of normal as well. Thank you for the advice. I sincerely appreciate it. So tired of hearing from relatives "maybe he' just small" when he was a little chunker until 1, when all the problems began. 

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Maybe he is just small.  I come from a family of little people who cling to the 5 to 10% range in the growth chart, but your son has some pretty abnormal symptoms.  I am not a doctor, but just a concerned Mom.  I just mention the elevated IgA (tested several times) because mine was elevated and I do test weird on the celiac panel.   It might help you get the rest of the panel and it might be nothing, especially in a toddler.  

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Welcome.  It sounds like your son has a lot of the issues my son did at that age. He went from the 65th percentile to the -10 by a year. Unfortunately the doctors never thought to test for celiac until he was in his late teens.  It is my understanding that children can show a false negative on tests even more often than adults. Do give him a good strict try on the diet after all celiac related testing is done.

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