Son Tested Negative But Has All Symptoms

[leo71]

Hi-I need some help/advice. My son who is 11 has terrible stomach aches, diarrhea at least once or twice a week and a lot of gas. He is small for his age as well although he is a picky eater. We had him tested 2 1/2 years ago as my mother and brother both have celiac and my pediatrician did a very full panel and all turned out normal. Looking at the results they weren't even borderline-yet he still has these symptoms. Could the test me wrong or could he have developed in the last 2 1/2 years? Any advice is appreciated greatly.

-Nicole

[Mizzo]

Could he have a Gluten intolerance? Not Celiac's

Have you tried an elimination diet trial ?

[shadowicewolf]

It couldn't hurt to get him retested (with his family history, i would), after all its just a little blood

[GottaSki]

The tests can be negative! Mine were only marginally positive, yet my damage was severe with several positive biopsies.

My daughter, sons and grandchildren ALL had negative blood panels - one son (17), daughter (27) and her kids (2,4) all improved gluten-free, last son shows some minor symptoms, but has not gone gluten-free (he still eats gluten out of the house).

False positives are very rare if not impossible - False negatives happen!

[rosetapper23]

Test him again--remember, celiac must be triggered. If celiac exists in the family, all family members should be tested yearly. However, in your son's case, even if he tests negative, a trial gluten-free diet should determine whether or not he is gluten sensitive. You're a good mom--your son is lucky!

[T.H.]

... in your son's case, even if he tests negative, a trial gluten-free diet should determine whether or not he is gluten sensitive.

I'd definitely recommend that, too. We have a number of celiacs in my family and my son tested negative. We took him off gluten anyway, and his symptoms improved, so I'm a big believer in trying it out, now. Frankly, I think if there's celiac disease in the family, everybody should try the diet for a little while, just to see if it helps them out, because it's certainly not going to hurt 'em.

And the way these things go, it's likely they'll have to try the diet sometime in their lives, if they happen to have the disease trigger, eh?

[leo71]

WOW-thanks so much for all of the responses...Gluten free diet here we come!!

[domesticactivist]

The only problem with just trying the diet at this age is if it works you eliminate the chance for a positive result. This becomes a problem if you are dealing with schools, because they tend not to make accommodations without a dr note and diagnosis. Without accommodations they will almost certainly provide an unsafe environment.

Also, going back on gluten really sucks if there is an issue. So before trying it I'd definitely test.

That said, we tried the diet before knowing about testing and it made a huge improvement, even in areas we hadn't expected ( learning disabilities disappeared!) Since we are homeschoolers we've just had to deal with camps and classes, and while they don't always get it right, they do try.

If you try the diet, do it for real. At first it was very up and down for us because we hadnt decontaminated our house and were stillgetting exposed from things like gluten-free products. There is a post on the blog linked from my profile with lots of details on truly eliminating exposure to gluten.