1 Year Old Too Young For Endoscopy?

[nanderson85]

Hi There, 

I am new here and my DS just had blood work done and it came back positive for Celiac. My husband's sister as well as his cousin have Celiac so I wasn't surprised when the doctor wanted to check him but I am surprised that it came back positive because he does not have any symptoms, that I can tell/know of. I know he is one so he can't tell me how he feels but he isn't upset after eating and poops fairly normally, despite being a bit constipated after switching to cow's milk. I am really wondering if anyone knows how accurate the blood work is in someone his age and also if anyone else has gone through an endoscopy with a child this age. He has been eating solid good since he was 6 months - so about 8 months now - is it too early to see anything in a scope or could there already be damage? I tried researching online, but I only get more confused reading everything and there isn't too much that relates to children his age. Any advice/thoughts are welcome and appreciated! 

[nvsmom]

Welcome to the board.

 

The tests for celiac disease almost always indicate celiac disease.  The rate of false positives is very low, generally below 5%, and those weak positives (often the tTG IgA) are caused by something else like a serious infection, thyroiditis, diabetes, crohns, colitis, and chronic liver disease.  With a family history of celiac disease and no symptoms indicating other diseases, it is celiac disease.

 

This report (pages 10-12) discusses the various tests as well as  a chart (page 12) on the specificity of the disease - specificity means how often a positive is caused by the specific disease (celiac disease).  As you can see, the tests are pretty specific to celiac disease.  If he had more than one positive test, then celiac disease is pretty much a sure thing.    Open Original Shared Link

 

The scope may show damage in him.  In adults, a celiac only needs to eat gluten in the 2-4 weeks prior to the endoscopy to have measurable damage in a biopsy. As long as your son is still consuming gluten, there is a good chance it will be found. Do ensure that at least 6 samples are taken if you choose to have the procedure done; the intestines have a surface area that is the same as a tennis court so if damage is patchy, it can be easy to miss.  

 

If the scope does come back negative, please remember that the scope misses up to 1 in 5 celiacs.  He has already had positive tests so you know he is a celiac no matter what the tests say.

 

Symptoms of celiac disease can be mild.  I was constipated as soon as solids were introduced into my diet.  I started getting stomachaches when I was school aged - it was nothing debilitating but I did lay down and squirm with the pain.  As the years passed my symptoms became more severe but no one figured it out because I was tall and active with C.  Kudos to you for finding this so early and helping him recover.  You'll be saving him years of pain and poor health.

 

This is an interesting article about the usefulness of watching for symptoms in diagnosing celiac disease in kids. Open Original Shared Link

 

Don't forget to retest his siblings and dad every couple of years for life if they continue to eat gluten, sooner if they show symptoms.  Celiac can manifest at any time in life.

 

Best wishes.

[nanderson85]

Thank you for your reply and insight! I feel fortunate that Celiac is something that has been talked about in our family for a few years now so I am familiar with the basics...I know I still have so much to learn though and that worries me a bit. I want to do what is best and right for my son. I also do feel fortunate that it was caught so early, hopefully avoiding a lot of pain for him. We have an appointment with a GI specialist in early November so hopefully they will be able to give me even more insight. I am sure I will be back again with more questions! Thanks again 

[nvsmom]

I'm happy to try to help.    Good luck with the GI.  I hope he's a good one and knowledgeable in celiac disease.  Let us know how it goes.

[calabaza78]

Just popping in to say that my daughter was diagnosed via blood tests and EGD biopsy at 1 (technically, 21 months.) The report that was written on her biopsy indicated that the specimens did show intestinal damage characteristic of celiac.  

[SMRI]

As far as procedures go, the endoscope is pretty "easy". It's light sedation, quick procedure and usually they will feel 100% shortly after waking up.  I'd do the scope if your dr says just because I know other people who've had issues with getting accommodations and whatnot in school if they are not "biopsy confirmed" Celiac----why, I don't know.