No Symptoms, Neg. Blood, Will Endo Show Anything?

[Cara in Boston]

My younger son was diagnosed with celiac disease in March (strange blood results, positive biopsy). I had a blood test that was very positive, but my endoscopy was fine. I've had lots of symptoms that have resolved since going gluten free. My son had very few symptoms but (I guess) he is doing fine on the diet too.

My older son (8) has tested negative on all blood tests (twice). When I started learning more about celiac disease, I realized that it could be the cause of his unexplained tooth enamel issue (no one else, pediatrician or dentist, seemed to think it was an issue other than cosmetic) so I brought him to the specialist that is treating my younger son. She seemed very concerned and has scheduled him for an endoscopy next week (moved him to the "top of the list" according to the scheduler who called).

So now I'm thinking he probably has it too? I want to switch him to gluten-free right after the procedure (won't be hard, two of us are already on board) but my husband thinks I'm just being crazy - that I assume gluten is the cause of every problem. Why would I limit his diet when he has no other symptoms? etc. etc. As if eating 100% gluten-free is some sort of tragedy - really, he is almost there now since all our dinners are gluten-free it would really only mean changing his cereal choice in the morning and switching his bread at lunch.

Anyway, I want to switch him right away in case the endoscopy is positive (get a head start) but may keep him gluten-free for a few months even if it is negative. He has other, posibly related issues (moody, explosive outbursts when provoked, etc.) but these just may be 8 year old boy things. (Maybe I do always jump to the conclusion that gluten is always the problem.)

Am I crazy to continue to suspect he has a problem even if all tests are negative and he has no real symptoms? The tooth thing has been concerning (they are streaky and stained - always have been - even though he takes very good care of them) since his adult teeth came in and no one has given me an answer that makes any sense. celiac disease would explain a lot.

Anyone have negative blood, no symptoms, but still had a positive endoscopy?

Is there something else it could be?

Cara

[Roda]

Wow this sound so much like us. I was diagnosed first in 2008. Both my kids at that time were screened via blood work and both were negative. FF two years and the youngest(now 6) is having symptoms and he has a positive ttg. We put him gluten free Nov. 2010 without doing the scope (hubby later regreted this). Confirmed gluten is an issue after doing a gluten challenge(hubby no nonger doubtful). Older son(age 10) has been negative three times on his blood work, yet I still think he has it. His past medical history seems to fit, he is slow to grow and definately has tooth enamel problems. His dentist is clueless about celiac, and like you he takes very good care of them, yet we are told it could have been from an injury when they were forming (his permanent teeth). His baby teeth are filled with fillings (too many to count) and out of his top four permanent teeth three of them have weird discoloration on them. Two of his bottom permanant teeth have pits in them and the dentist does not know why. As of right now there are no cavities in those areas but eventually we will have to have them fixed. He also last visit had to have a filling in his first permanant molar despite good oral hygiene and sealants! I'm working on a referal now to a pediatric GI doctor for further work up on him. Even if he is scoped and it is negative I will trial him gluten free. His allergest thinks he needs to be anyway, so we have that support. My husband felt very much the same way as you describe yours. He doesn't feel that way anymore about the 6 year old since he is the one who called off the gluten challenge and admitted that he is better without gluten. He still does want me to get some formal diagnosis for him for later down the road. It shouldn't be a problem getting that for him. As for the 10 year old, he is still hesitant so that is why we are going to persue the scope/biopsy. Hubby already knows my plans despite the biopsy results. He is starting to realize that "maybe" he is not growing as much as he should, etc. and if gluten free can help then he will go with it.

As for blaming the gluten for all symptoms.. it can be easy to blame it on so I try not to but here is an example that fits with gluten. I had my 6 year old to the doctor today thinking he had strep. I usually can tell by his behavior when he has it. Well, he doesn't have strep and was told he was fine. Well, it probably is still related to the gluten he was given at summer day camp 12 days ago. I thought I was out of the woods, but I guess not.

[T.H.]

I don't think you're crazy to want to check this out, not at all. He's in a high risk category of a disease that is still poorly understood, on the rise in the population, and under-diagnosed - and can cause long term, debilitating problems if left undiagnosed.

So...a little diet change and disruption to routine now to test where he has it vs. potentially serious consequences later if you don't test and he DOES have it.

I think that's kind of a no-brainer for a parent, yeah?

And your concern that he might have other symptoms is very valid, I think. The moodiness and explosive outbursts are two of the BIG issues with our little boy, who also tested negative on the blood test, but whose family has the disease.

We kept him on the diet for a year, and then did a 1 week trial. His reaction to 1 slice of bread is not a huge response, physically - bloating, gasiness, a little stomach pain, and became lactose intolerant again.

But the mood and temper issues went through the roof until I was ready to lose my mind.

It's more motivating for ME to keep him on the diet than HIM to do it, LOL.

Also, as to things it could be? Other food issues could play a roll, or other problems in the gut - anything that can interfere with absorption of food can be an issue, and an allergy makes the gut inflamed. Intolerances can be problems, as well. We found out my son has a bit of a problem with a couple other foods, too, but when we avoid them all, we seem okay.

[mushroom]

I agree with the PP's - your son does have possible celiac symptoms; they are just not those that doctors commonly associate with celiac. But on the board here we see them quite often, the temper tantrum meltdowns that go away gluten free, the tooth enamel problems. Doctors think that symptoms have to be GI but t'ain't so, including on the testing. And they have not yet devised accurate testing for those who do not react with typical GI symptoms , so don't take a negative as necessarily accurate - trial the diet regardless.