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Understanding Very Strong Positive Test Results for 3 Year old

CecilyParsley
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CecilyParsley Newbie
CecilyParsley
Posted

My daughter has just returned a strong positive result for celiac disease, which the doctor described as “really, really high”. I am after some context for these results. Are they typical for untreated celiac disease serology? They seem so high that I am worried they indicate something to be concerned about. Do high results correlate with the level of mucosal damage in the intestine? 
 

I have attached a picture of the results for reference.

0E7D5390-6C0D-4A89-B58F-4B5644F22AFA.webp

7F912E9A-D30B-466A-BDE7-24F78AB5380A.webp

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cyclinglady Grand Master
cyclinglady
Posted

These results seem to indicate that your daughter probably has celiac disease.  The next step would be to biopsy the small intestine via endoscopy.  Some new studies suggest that biopsies may not be necessary in children.  So, talk with your doctor.  Consider just a PED GI consult as he or she may be more celiac-savvy than your PED or family doctor.   They may suggest trialing the gluten free diet to see if the numbers start trending down.  If you go for the biopsies, please know that staying on a gluten diet is critical. 

High antibody levels do not necessarily correlate with damage, so relax.  Besides, kids tend to heal fast.  My antibodies were not that high at diagnosis, yet I had some severe damage.  Subsequent tests showed results that were off the charts after a hidden gluten exposure (dang, I didn’t even get to eat a donut).  Years later, my antibodies were still elevated yet I had completely healed after a repeat endoscopy.  

If you have other children, they should be tested before any dietary changes.   First degree relatives (that includes you too) should be screened.  A recent study at Mayo Clinic found that 44% of first degree relatives were positive for celiac disease and about 80% were asymptomatic!  

More questions, please ask.  I understand your concern about having a child with celiac disease, but know if you are going to have an autoimmune disorder, this one is treatable without any medications.  There is a steep learning curve to the diet, but eventually, it becomes second nature.  

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