Testing In 5 Year Old Who Is Gluten-Lite?

[Mom-of-Two]

So, I got my celiac diagnosis a year ago, my 8.5 year old has been gluten-free 6 months and just had her follow up- her ttg in normal range (was 80) and she is now EMA negative (was positive 6 months ago). Her vitamin D also doubled and she appears to be absorbing perfectly now- I took my 5 year old along to the appt because he is having tummy aches, he complains his waist hurts-- He just had his well checkup with pediatrician, urine was normal, nothing out of the ordinary when examining his belly, she felt it was just a constipation issue- since we are gluten free home, he does struggle with pooping regularly. We are working on fiber.

He had a ttg test only, a year ago when my daughter was tested-- he was normal, but this GI says let's go ahead and test him now---- he says the amount of gluten he is eating is plenty for testing-- he eats snack at school twice a week, at home has macaroni a few times a week, maybe 1-2 times a week, breaded chicken when we are on the go. Cheerios at home, but they don't really have gluten in them- just contamination risk. He eats normal food at events, whatever but I hesitate to say he is eating it super regularly. He said the lab order is good for 30 days (3 weeks now left to get labs done). Is it worth it to load him up over the next 3 weeks and how would I do that with no bread in the house, just do cereal, regular pretzels, etc daily maybe???

What do you all think?

I really want to rule this out, the genetics are not on his side!

[chickpea77]

My son eats some gluten every day, but not much at all. We took him off of gluten altogether for 2 weeks over Christmas just to see how he would respond. His total demeanor changed, no more belly aches, much happier.... We decided to take him to the dr after seeing the results. We had bloodwork done and his ttg iga came back 25 (20-30 weak positive). We had repeat bloodwork done 2 1/2 weeks later after boosting his gluten intake (it was supposed to be 3 weeks later,  but he lost 4 pounds in the 2 1/2 weeks and I freaked out  ). The results of the second test was 37 (>30 moderate to strong positive). I know it isn't much of a jump, but still enough to see a difference in a short period of time.... The rest of the panel came back negative, but we are booked for the scope and biopsy for next Wednesday....

[Mom-of-Two]

I think that's what I'll try- it varies and some days he has a lot- today they had pretzels for snack at school and it was a birthday so also had cookies- and then breaded chicken when out this afternoon. Maybe I will wait and do it in 3 weeks

The reason I wonder if it is enough time in a child that is already eating gluten, is that the reverse happened in my 8 year old- we had tested her because of me, she came back with ttg of 80, but went on to have a normal biopsy-- when I decided to make the house gluten free for my own benefit, I decided after 2 weeks I should get her tested further- with EMA and vitwmins, etc, got a 2nd opinion from a ped GI-- from going normal diet to gluten free at home, in only 2 weeks, her ttg dropped in half.

[nvsmom]

If he's eating some gluten, and by the sounds of it it isn't that light, I would add a bit more gluten for a few weeks (as long as it's not affecting his health too much) and then do the blood test.

 

If his blood tests are at all questionable, or he continues to have symptoms, I would make his diet gluten-free. since you and your daughter are already eating gluten-free, it should be a fairly easy transition for you all. 

 

My kids all tested negative but had symptoms so I made them all gluten-free rather than wait and risk gluten turning into a health issue for them.  Two of the kids are shown health improvements and my third is just along for the ride.  I mention this just to point out that he could have a false negative test or be non-celiac gluten intolerant, in which case the treatment is still to eat gluten-free.

 

Best wishes

[Mom-of-Two]

Yes, I am prepared for that- the testing process is a pain my 8 year old tested + on her labs (including EMA) but not a speck of damage found on biopsy (with proper 7-8 samples done), not even increased cells. Because she had some vitamin losses and her symptoms resolved (joint pain), her GI doc says he is 100% certaun the damage was THERE, just a patch that was not biopsied. I should add, she was only tested due to my diagnosis- her joint pain wasn't a thought until I knew she was + but lo and behold, NO joint pain in 6 months now.

I will push the gluten next couple weeks and test- and hope for a conclusive answer one way or another. He has daily tummy pain (he calls it his waist), but the ped and GI both assure me it's related to not pooping daily- lab results aside, we are working with more fiber, etc to try to remedy that issue.

[nvsmom]

I never had "D" before I was diagnosed, it was always "C" with me too. I would go a few days without a bathroom visit, and it did get uncomfortable, but the pain from being gluten was very different for me... It was the pain I associated with getting after every meal.

 

Best wishes.