4 Yr Old Son

[Scarletgrrrl]

After recently being diagnosed with gluten intolerance (marsh 1 lesions), I got my 4 yr old son blood-tested. I am not sure which tests they did (they didn't do the full panel with me) but the nurse told me over the phone his gliadin is elevated and his iron levels are low. I have to wait a week until my appointment, but I thought I would post to see what people's thoughts are.

S

[appletree729]

I would make an appt with a pediatric GI doctor asap if you haven't already...

 

you might know all of this already, but just in case you don't - the blood tests are most often used as a precurser to an intestinal biopsy to confirm a celiac diagnosis.  Both elevated gliadin antibodies and low iron are consistent with celiac disease so they will most likely recommend a biopsy.

 

Some more knowledgeable people here will surely have more to add but it might be helpful if you have the results handy and can post them.

[Cara in Boston]

I would find a "celiac savvy" pediatric GI first (try contacting the Celiac support group in your area first) .   Testing kids is complicated and often done wrong.  A first degree relative with celiac and elevated gliadin is a pretty good indicator that something is up.

 

After my son tested positive, we took him to a GI who said he couldn't possibly have celiac because he wasn't sick (we only saw a behavior change, no GI symptoms) and he was not underweight.  When I pressed about the blood test results, the doctor said it must have been a lab error and that I had "read too many magazines."  By that time, I had tested positive too (finally found a reason for all my GI issues - I just thought I was getting old . . . ) so we took him to a Celiac specialist at Children's Hospital.  

 

They did a biopsy and found extensive damage.  They had also planned on treating him even if the biopsy was negative, given his family history (me) and his blood test.

 

Trust your instincts and know that not all doctors know how to test for celiac in kids.

 

It took us a total of 4 months to get the final diagnosis (from first noticing the behavior change to getting the biopsy results) and it was hard.  You have to continue to feed them gluten until the tests are done.  It was so obvious to us that this was causing his problems so it was a very difficult 4 months.

 

Cara

[Scarletgrrrl]

I will be getting the results next friday when we go for the follow up appt. I thought it would be a good idea to be prepared first.
Thanks for the suggestion about contacting the celiac support group for a good GI.

We definitely won't be going to the GI I saw. He had a locum at my initial appt who said "I probably had IBS" then said to just have 2 slices of bread for 2 weeks prior to the endo. Then at the endo he had 2 students perform the endo. They only took 3 biopsies and I am not sure if they laid them on the slide correctly.

I definitely want my son to get an endoscopy. I think it will help him to stick with his diet if he has a definitive diagnosis. I am hoping my partner agrees to then make this a gluten-free household. FX we don't have to wait too long for an appt.