Confused as how to proceed

[meycita]

My 7 year old son got tested for celiac at my request, since he was showing symptoms of gluten intolerance: abdominal pain, constipation, eczema, irritability and behavior issues. He's also very slim but not anemic. He also has ADHD and the nurse practitioner who manages his ADHD meds (which is not his pediatrician) order the blood work. His IGA was 145 with a reference range of 41-368 so he's not IGA deficient. His TTG IGG was 12 with a <6 reference range and his TTG IGA was 4 with a <4  reference range. After the results were back, the NP referred me to a GI. I took the first available appt at children's hospital and got an appt. with a GI nurse practitioner. She ordered the endoscopy which he had last week and called me with the results 2 days later. She had said during our consultation that he could go gluten-free right after the scope based on his symptoms and blood work. Fast forward to Friday when she called me to tell me his biopsy was negative and his scope was good, that he's not Celiac based on the biopsy and that he could continue eating gluten. When I asked her why his blood work was positive, she said " I don't know, but that's not to say he won't develop Celiac 2 years from now, but for now he doesn't have it and can continue eating gluten". 

I completely disagree and based on everything that I've read, false positives are pretty rare, and it could be that his intestines haven't been damaged yet. I don't know if I should go and talk to his pediatrician about it, bring him up to date on everything and see how we should proceed, or if I should get a second opinion from a GI and not a GI NP (no offense to nurse practitioners). We already started him gluten-free and I plan to keep him on the diet to see if his symptoms improve, but I would like to get answers if he's really celiac and if not, then why was his blood work positive. Any advice?

[cyclinglady]

  On 5/6/2018 at 9:26 PM, meycita said:

My 7 year old son got tested for celiac at my request, since he was showing symptoms of gluten intolerance: abdominal pain, constipation, eczema, irritability and behavior issues. He's also very slim but not anemic. He also has ADHD and the nurse practitioner who manages his ADHD meds (which is not his pediatrician) order the blood work. His IGA was 145 with a reference range of 41-368 so he's not IGA deficient. His TTG IGG was 12 with a <6 reference range and his TTG IGA was 4 with a <4  reference range. After the results were back, the NP referred me to a GI. I took the first available appt at children's hospital and got an appt. with a GI nurse practitioner. She ordered the endoscopy which he had last week and called me with the results 2 days later. She had said during our consultation that he could go gluten-free right after the scope based on his symptoms and blood work. Fast forward to Friday when she called me to tell me his biopsy was negative and his scope was good, that he's not Celiac based on the biopsy and that he could continue eating gluten. When I asked her why his blood work was positive, she said " I don't know, but that's not to say he won't develop Celiac 2 years from now, but for now he doesn't have it and can continue eating gluten". 

I completely disagree and based on everything that I've read, false positives are pretty rare, and it could be that his intestines haven't been damaged yet. I don't know if I should go and talk to his pediatrician about it, bring him up to date on everything and see how we should proceed, or if I should get a second opinion from a GI and not a GI NP (no offense to nurse practitioners). We already started him gluten-free and I plan to keep him on the diet to see if his symptoms improve, but I would like to get answers if he's really celiac and if not, then why was his blood work positive. Any advice?

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He could go back on gluten and get the rest of the panel (EMA and DGP) because it can be easy to miss damage areas in the small intestine which is vast — like the size of a tennis court.  An elevated TTG could be another illness like Crohn’s, so just tuck that away for now.  

I would suggest getting a copy of the GI report and the pathologist’s report.  You should have it in hand when you consult with his PED and possibly another GI.  Make sure that enough tissue samples were taken (more than six and in the recommended areas). 

[meycita]

Would the result be inaccurate if he was to get the blood work on Wednesday (exactly a week after going gluten-free)? I don't know how long the antibodies take to leave the body once you start the diet.

[pschwab]

Another route to take could be genetic testing. If he has the gene that could push them to test further to see if he’s actually triggered the celiac, and if he doesn’t have the gene celiac is ruled out and you can pursue other reasons for his condition. It’s not cheap though so keep that in mind as well.

[cyclinglady]

  On 5/8/2018 at 1:20 AM, meycita said:

Would the result be inaccurate if he was to get the blood work on Wednesday (exactly a week after going gluten-free)? I don't know how long the antibodies take to leave the body once you start the diet.

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One week should be okay.   I read once once (and now I can not find my source) that in as little as two weeks antibodies can be reduced significantly on a gluten free diet — for SOME people.   Of course there are others like me who took a year or more to reduce my antibodies.   

 

[cyclinglady]

Get the pathologist’s report.  Make sure his GI took enough tissue samples!