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Should we assume toddler is celiac?

Pizzabagel
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Pizzabagel Newbie
Pizzabagel
Posted

We have been dealing with my almost 2 year olds failure to thrive and food intolerances since he was six months old. We removed dairy and soy first, then other top allergens from mine and his diet (since he's breastfeeding). He's been off of gluten almost completely for the last year, but we've still had him around it (his other siblings and family members eating it.) He seems to react to wheat and many other carbs (oats, rice) and dairy which has our allergist suspecting celiac. 

My husband has gluten intolerance in his family and I've got a HLA-DQA1 +/- (I'm not sure how this would affect my son) . My son did start gaining weight for a little time, but has stalled recently (around the time we trialed gluten with him.) The allergist recommended we do a gluten trial with him and we lasted four days, but he woke up screaming every night around 3 am, so I just couldn't last and we stopped with gluten.

Even though he hasn't been eating gluten, our PCP had us do the blood test for celiac and also the genetic test. We haven't got the genetic results back yet, but all of the other tests for celiac have come back as negative. I'm not surprised, he hasn't been eating any gluten except for four days and a few other days over the past year. I was hoping that if he IS celiac we would have had some indication of it in the blood test, but since we haven't, I just don't know what to do. Should I assume celiac because of his reaction to gluten? Should i assume gluten intolerance and not be too worried about cross contamination? Any other parents with toddlers who show reaction to gluten but don't test positive on the celiac test? 

I've got my other kids trialing gluten for them to take the celiac test, so it is still in the house, at least for the next four weeks. But if he tests positive on the genetic test, and then if any of the other kids test positive on the celiac test, we'll become a gluten free household. 

Thank you all!

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GFinDC Veteran
GFinDC
Posted

I think it's better to keep him 100% gluten-free for now.  Eating a gluten-free diet is not harmful.  There are plenty of naturally gluten-free foods to eat.  He can get tested when he is older, like a young adult age.  From his reaction to gluten I'd suspect celiac disease.

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