Chronic Stomach Pain In A 5 Year Old?

[sarahelizabeth]

I was on this site 2 years ago looking for answers for my younger son who ultimately tested negative for celiac at 20 months of age (although STILL has bowel issues now at over 3 but I digress). Now I am revisiting the idea with my older son who is now 5. He's been complaining of intermittent stomach pain for over 1.5 years now. He's been treated for reflux with only some relief from the pain. Our ped finally referred him to a GI Dr last month who ordered a bunch of blood, urine, and stool tests, as well as an upper GI with small bowel follow through and an abd u/s... all of which has come back normal. He claims that this must not be reflux otherwise the meds would have helped. He mentioned testing him for celiac but decided not to when I said both my younger son and myself tested negative via blood tests. Now I am wondering if that was a poor choice?? Should we consider having him tested??

We are quite perplexed with where to go with the normal testing. He's lost 3.5lbs in the last 6 months and isn't growing in height at all. He's gone from the 50th percentile in height when he was 2 down to the 5th-10th in height now at 5.5 years old. He has very mild constipation issue (not even worth treating) and doesn't have issues with diarrhea, bloating, or gas. He does run a chronic low grade temp... his normal body temperature is 99.7-100.2 orally. I should add he's got an Asperger's diagnosis... and has issues with anxiety (talk about mood swings... YIKES!!) .

I guess my question is about stomach pain... where is it "usually" located?? My son complains of very high stomach/chest pain (like you would think for reflux). Is that in any way linked to celiac?

Also, does testing for inflamation like sed rates usually come back positive in kiddos with celiac?? My son's was TOTALLY normal (as was his cbc, crp, lipase, amylase, ua, stool guiac, and all stool cultures).

[Ursa Major]

First of all I would like to mention that celiac testing in children under six is notoriously unreliable, and that goes for both the blood work and the biopsy. And it isn't all that much better in older kids and adults.

There are virtually no false positives, but a negative test can NEVER rule out celiac disease.

Both your sons sound typical for kids with celiac disease. Yes, not having your older son tested for it was a poor choice, but you can easily remedy that. Have him tested as soon as possible.

But even if he tests negative, you ought to try both of them on the gluten-free diet.

Mood swings and autism symptoms are very common with celiac disease, and your son may not have AS at all, but celiac disease that causes symptoms of AS. Especially reflux and failure to grow are very telling signs of celiac disease in kids.

In children, the only reliable test is to try the gluten-free diet. I suggest you put ALL of you (yes, yourself as well) on the gluten-free diet once you are done with testing. I would be very surprised if you and your sons wouldn't improve in many ways on the gluten-free diet.

Just be aware that you may also have to eliminate all dairy and soy, at least for a while, until everybody has healed, as those can hinder healing (as well as cause villi damage on their own).

[sarahelizabeth]

Just be aware that you may also have to eliminate all dairy and soy, at least for a while, until everybody has healed, as those can hinder healing (as well as cause villi damage on their own).

Thank you for your response!! My younger son is already milk/soy free because of food allergies. He takes elemental formula for supplemental nutrition for borderline failure to thrive. So making the rest of us milk/soy free for a while wouldn't be tough. Going gluten free however sounds SOOO overwelming to me with all the other food allergies we are dealing with. I am sure its not really (I thought milk and soy would be and its not bad). I've been contemplating going gluten-free for a long time... perhaps I just needed a good shove in that direction.

One question though... should I leave him on gluten and have him tested first?? Or just trial gluten-free?? My older son goes back to the GI mid-August and my younger son goes back in the end of August so not much longer.

[Ursa Major]

Since your son isn't deathly ill (yet), waiting two more weeks should be okay. If you want him tested he needs to be eating gluten until the tests are done. Otherwise he is guaranteed false negatives.

I would never advise anybody to put their children back on gluten for testing after they have been on the gluten-free diet and are doing better. But it seems the best choice at this point to keep your older son on gluten until you can get the testing done, since you are seeing the GI doc so soon anyway.

Mind you, in your younger son's case, it might be a good idea to try the gluten-free diet BEFORE his appointment, since he has been tested and the tests came back negative. If you try him on the gluten-free diet, make sure you keep a diary of what he eats, and note any changes in mood, weight gain/loss, symptoms disappearing (reflux, stomach aches, bowel movements etc.). If he improves, you will be able to prove to the doctor that he cannot tolerate gluten, despite negative tests.