19 Month Old Without Diagnosis

[bo-bear's mom]

I'm trying to find some information about celiac or wheat sensitivity diagnosis in toddlers. I have a 19 month old who has (so far) unexplained pale, extremely smelly loose stools. She's eaten wheat etc since about 8 months without problems. Growth and height are normal but her symptoms have not been occurring for very long. Just went through testing for bile blockages and liver/pancreatic function. So far all negative. We found "celiac" as a possible differential diagnosis for pale, foul-smelling stools in current literature (as well as dating back to 1945 in an old family baby book).

We're considering the possiblity of a gluten issue if this doesn't clear up but are against the idea of an intestinal biopsy. Hoping to talk to the doc today and see if they can test the blood they already have for antibodies. Otherwise we are considering just removing wheat for awhile and seeing if this clears up. We're getting a bit desperate since the smells of her dirty diapers are enough to cause us to vomit...that got pretty old, pretty fast.

Does anyone know how long after symptoms are present (diarrhea for instance) before tests MIGHT turn up positive? Everything I've read indicates that the under 6 crowd is the hardest to diagnose.

Also, are there any issues (other than a huge pain) with just not eating gluten if one doesn't have a diagnosis of celiac? It seems that with one diagnosis of celiac, whole households are going gluten-free. From a nutritional standpoint (I have a background in medical research) it doesn't seem like an issue if the diet is still balanced unless I am seriously missing something.

Thanks...

[salexander421]

I would go ahead and have her tested while she's still eating gluten but would try the diet regardless of results. If you do get a positive blood test but don't want to do the biopsy you might not get a diagnosis from the doctor but you pretty much would have your answer. False positives on a celiac blood test are EXTREMELY rare. I've been told that some doctors will diagnose with a positive blood test and positive response to the diet, I guess it just depends on your doctor. On the other hand, false negatives happen about 30% of the time so a negative might not necessarily mean she doesn't have celiac so it would be wise to try the diet even if she tests negative. If you don't care about a diagnosis then just go ahead and try the diet. Just know that if you change your mind and decide you would like to try for a diagnosis after you've gone gluten free then you would have to put her back on FULL gluten for about 3 months before testing.

As far as the gluten free diet being healthy, it definitely can be just as healthy if not more than a gluten filled diet. A lot of times when you eliminate gluten you also eliminate a lot of processed foods. There are so many healthy grains out there that can easily replace the gluten ones and of course fresh fruits and vegetables are naturally gluten free and healthy. Hope that helps!

[teresasupermom]

If she's having symptoms and has celiac she should test positive. You shouldn't have to have symptoms for x amount of time to get a positive antibody test. Now the intestinal damage might be different. We are still fairly new to celiac, but my daughter's test came up very positive and her biopsy was very clearly showing celiac.

[salexander421]

Actually, it takes different people different amounts of time to produce antibodies. You can be having symptoms and not be producing antibodies yet. That's why there's really no way to know if your test will be negative or positive based on symptoms. Unfortunately celiac testing is not so black and white, there's a lot of research that needs to be done and a lot of improvements need to be made.