New "dx"...should We Do The Endoscopy?

[tristansmom]

We just got back the celiac blood panel results on my 7 year old.  The numbers are as follows (the report states that normal for all of these is less than 20):  Gliadin IgG:  196; Gliadin IgA:  404; tTG IGA:  252; tTg IgG:  163; Endomysial IgA Screen = Positive.

 

This is all VERY new to us, as this diagnosis came very unexpectedly.  We have a referral to a GI, but our pediatrician feels that we do not need an endoscopy to confirm given the numbers.

 

Those of you who understand all of this...what do you think of the results?  Would you do an endoscopy?

[StephanieL]

Those numbers are really high. I have never seen numbers that high. What signs and symptoms was your child having that lead you to the testing?  I am almost wondering if there wasn't a lab error. 

[tristansmom]

He has had issues all his life---low muscle tone since he was a baby (not sure if it is related or not???), he has ADHD and Autism symptoms, he frequently drools (though no doctors--and we have seen MANY ENTs, craniofacial drs, etc over the years and had a few ENT surgeries to try to address--can figure out why), is very lethargic, is very, very skinny and has difficulty putting on weight, and his behavior is off the charts--lots of tantrums, extreme moods, etc.  We finally found a pediatrician to tried to put all the symptoms together and decided to test for celiac as a first step.  Also his ferratin is 8--I know that is low but I'm not sure how much?

[cyclinglady]

That is very low for a ferritin level! He is not absorbing iron well enough to store it. I am not a doctor, but my ferritin was 2 and despite iron supplements, I could not increase that number until I went gluten free and started to heal. I have plenty of iron stores now and am no longer anemic. Being anemic deprives you of oxygen -- even to your brain. I thought I was getting dementia, but that too has resolved.

[RMJ]

I think it would be unlikely to have a lab error on all of the tests, the EMA is run in a completely different way than the others.

There are some guidelines for diagnosing children without biopsy if a number of the blood tests are really high - but I can't find the guideline right now, and don't remember the age of children where this is used, or how high (I think it was 10x the normal value). Hopefully someone else will provide a link to the guideline.

[africanqueen99]

^^^ I think the guideline is basically the GI's call.  Our GI didn't test the 1.5 y/o because of age, stress on the body for little chance of seeing damage, etc.  She was also willing to DX the 7.5 y/o based on elevated blood levels (in that weird window of going either way) and lack of growth without a scope.  I asked for the scope on her, though - just wanted to see our starting damage point.

 

It might be helpful to see the damage and then you can gauge it as he grows - some GIs opt to do additional scopes to watch the healing.

 

Did they tell you to have the other kids and both parents tested?  Do it now before you change anything within your diets.  And keep him on a steady stream of gluten until you see the GI/get the endoscope.

[kareng]

It might be helpful to have it to see how bad the damage is, have a baseline if he doesn't seem better in a year, check for other issues like an ulcer. It also may be helpful in later life. There are research studies that he might want to participate in and they all seem to require a biopsy report. Some doctors will not give you an official diagnosis without the endoscopy & you will need that for school, Boy Scouts, future hospitalizations, college, etc.

They probably haven't gotten this far with you yet, but Celiac is genetic. All Brothers and sisters and parents should also be tested every few years.

[Cara in Boston]

Some people like to have the endoscopy done even though they know their child has celiac disease based on the blood tests.  This gives them a starting point for future healing . . . something to compare future endoscopy results with.  That being said, we've been gluten free for three years.  He gets regular blood tests and we watch him for symptoms.  Since both are normal, I'm not sure we would ever opt for another endoscopy since it is clear he is healing (or healed)  Seems like a waste of time and money  . . . we don't have to see it to know it is happening.

 

Like your son, we saw terrible behavior and lots of Autism-like tendencies.  Turns out he DOES have Asperger's, (just diagnosed recently) but most of the "obvious" symptoms disappeared when he went gluten free (flapping hands, no eye contact, short attention span, etc.)  The terrible behavior was gone in just a few days and he was back to his old, energetic self in weeks.  It was like we had a new kid.  A miracle really.  It never occurred to me that his issues might be caused by what he was eating.  We were taken completely by surprise too, but it turned out to be a blessing.  Changing his diet was SO MUCH EASIER than dealing with his unpredictable behavior.

 

If you can get the endoscopy done right away and your doctor requires it for an "official" diagnosis than I would go for it.  If you don't need it and waiting for one will delay starting the diet, I would skip it.  Depends on your doctor.  Those numbers are CRAZY high so it is clear he has celiac.

 

All first degree relatives need to be tested - even if there are no symptoms at all.  I tested positive after my son's diagnosis.  What a surprise.  I thought my "symptoms" were just me getting old.  

 

If you do have the endoscopy, there is a chance it comes back negative.  Don't let that lull you into thinking he does not have celiac disease.  The blood tests are clear (and unanimous) . . . the endoscopy does not always find the damage.

[nvsmom]

Those are very positive tests. No doubt about the diagnosis there. . I would personally say that the biopsy is not needed here but your doctor may feel differently. Be aware that the biopsy does not always match up to the blood tests so if it ends up negative for some reason, please go with the multiple positive blood get results.

Don't remove gluten from the diet until you are satisfied testing is done.

Best wishes with whatever you decide.

[RMJ]

Finally found the guideline I was thinking of for when it is ok to diagnose children without a biopsy, it is from the UK:

Open Original Shared Link

Similar European guideline:

Open Original Shared Link

Not everyone agrees with them:

Open Original Shared Link

[JennyW]

I don't remember the actual numbers from my daughter's first test at 14months, but they were also extremely high.  However, we opted to do the endescopy anyway because it is the one chance you'll have before you switch them to the gluten free diet exclusively.  She is now 5 and will be going into kindergarten and I'm glad we did the endescopy because if nothing else it gives her the firm diagnosis of celiac disease.  I have heard that when it comes to working with the school, it is much easier if you have the actual diagnosis, instead of just the presumed one.  Of course, it is up to you guys, but if you can get in quickly like we were able to, I would have it done.  The procedure itself was very quick and easy and we started her gluten free that night!  First meal she hadn't thrown up in months!!