Did Any Of Your Kids Have Negative Bloodwork But Positive Biopsy?

[Chakra2]

I am concerned about possible celiac disease in my 2 year old. I went gluten free with myself and my son in January looking for food allergies (not knowing about celiac disease) and later learned that I have had symptoms of celiac disease or gluten intolerance since infancy. My genetic test was positive for DQ2. After 7 months gluten free (with great results for kiddo and me) we did a 4-week gluten challenge with my son. His bloodwork done through LabCorp by our pediatrician was negative. We're waiting on the genetic test results, although I'm homozygous for DQ2.2 so I know my son has at least one DQ2.2. Our GI appointment is on Tuesday.

All of that is the background context of my question -- did any of you here have kids whose bloodwork was negative but whose biopsy was positive? I've read that in theory that can happen but just was curious if that actually happens in real life. I don't want to subject my precious 2 year old to a biopsy if it's not very likely that he has celiac. I am worried about his symptoms (mostly diarrhea and face rash but a few other things too). But I don't want to confuse his situation with mine -- I'm still kind of wrapped up emotionally with the discovery of this ongoing issue for me.

2 other context points -- my toddler is still breastfeeding and during the gluten-free time we did a lot of thongs to try to heal our intestines (which I still thought were just struggling from allergies). Probiotics, fish oil, etc. So now I have this concern that I got him too healed and it might skew the results. Could that really happen?

Any advice or thoughts would be appreciated!

Chakra2

[piglips82]

My 4 yr. old @ the time had bllod work done twice. Both negative. Still having tummy problems we took him to a GI specialist. Biopsy came back positive.

[sarahsmile81]

I am concerned about possible celiac disease in my 2 year old. I went gluten free with myself and my son in January looking for food allergies (not knowing about celiac disease) and later learned that I have had symptoms of celiac disease or gluten intolerance since infancy. My genetic test was positive for DQ2. After 7 months gluten free (with great results for kiddo and me) we did a 4-week gluten challenge with my son. His bloodwork done through LabCorp by our pediatrician was negative. We're waiting on the genetic test results, although I'm homozygous for DQ2.2 so I know my son has at least one DQ2.2. Our GI appointment is on Tuesday.

All of that is the background context of my question -- did any of you here have kids whose bloodwork was negative but whose biopsy was positive? I've read that in theory that can happen but just was curious if that actually happens in real life. I don't want to subject my precious 2 year old to a biopsy if it's not very likely that he has celiac. I am worried about his symptoms (mostly diarrhea and face rash but a few other things too). But I don't want to confuse his situation with mine -- I'm still kind of wrapped up emotionally with the discovery of this ongoing issue for me.

2 other context points -- my toddler is still breastfeeding and during the gluten-free time we did a lot of thongs to try to heal our intestines (which I still thought were just struggling from allergies). Probiotics, fish oil, etc. So now I have this concern that I got him too healed and it might skew the results. Could that really happen?

Any advice or thoughts would be appreciated!

Chakra2

It's possible in adults, so I'm sure it is with kids, also. My concern is that it won't show if your child hasn't been eating gluten. From the research I've done, it looks like introducing gluten and damaging the gut is the only way you'll get a positive (unless the gut's permanently damaged). You might want to reschedule after many months of a gluten diet.