Wheat Allergy Diagnosis

[Terri-Anne]

Even though I've been at this for two whole years, I still feel so overwhelmed.

We had Logan "tested" with a blood test at around his second birthday. It came back negative for celiac, although he had most of the wheat removed from his diet for about 6 weeks prior to the test (we were aiming for all of it to be out, but messed up slightly now and again). The pediatrician seemed very non-chalant. It seemed like a non-issue to him. Just, "the blood test was negative, it isn't celiac, must just be a wheat allergy, he'll probably out grow it by 6 years old" That was the end of the issue, it was never mentioned by him again! Taking the wheat out of his diet eliminated a myriad of symptoms, from GI to skin and in between.

He doesn't SEEM sick at all now.

He was 9 and a half pounds at birth, and 30 pounds by 6 months, (yes he looked like the Michelin tire baby, roll upon roll). At 18 months he was 46 pounds, got very ill with a virus, dropped to 42 pounds where he stayed for over a year. He is 4 1/2 now and I think about 48 pounds. To me he looks slender but to others he still looks heathy/solid. He has a plump round little bum, not wasted as I've read so many times is the case with celiac. His height is 42 inches which is I think between the 50 and 75th percentile, which sounds good, but he used to be beyond the 100th percentile for both height and weight, and while he is still growing he is gradually sliding downward on the charts.

I have not removed all gluten from his diet as I let him eat things with barley malt in them, such as regular rice Krispies, and Crispix cereal. He seems to sense the presence of wheat in things, always has. When he was little he would scrape the peanut butter off of a piece of wheat bread with his fingernail and eat the peanutbutter but leave the bread, to the best of his near-2 year old ability. Even now, he likes the idea of potatoe chips, always asks for some if we are eating them, but takes a bite or two of a chip and leaves the rest. A few months ago decided not to eat granola bars that contained lots of oats, but no wheat in ingredients, that he had eaten all along. I talked him into eating one oneday, and he soon doubled over in pain, crying and diarrhea, etc. I assume the oats were contaminated with wheat in the harvest, processing etc, and that he had become more sensitive (as he had been eating them no problem for months).

He does not SEEM to react to the barley and we are finally skilled at keeping him completely wheat free. We even learned to get him a seperate collander for his rice pasta as he started reacting after having his rice-pasta drained in our clean plastic "wheat" collander.

I looked into his mouth this morning and was horrified to notice his molars rotten. One is so bad I don't know if they will even try to save it!

I have two questions. Have I not read that tests for celiac done before age 2 are at great risk for being inaccurate? Is it possible that due to the fact that he'd been off wheat for several weeks before test the test results were tainted from that? (he was still getting gluten from barley, oats) If he had celiac, would he be reacting in an obvious way to the small amounts of barley he gets in his Rice Krispies, and some candies? Would a mere wheat-allergy, histamine type, versus celiac, cause dental enamel problems? I am trying to the best things for my kids, but I feel confused again. I know doctors are tough to convince even when faced with blatant obvious symptoms. Logan is more subtle now, unless he accidentally gets wheat itself. Does anyone know the answers to my questions?

[mat4mel]

I am always skeptical when a dr says the results were "negative".. sometimes a dr will blow off a low positive. You need to see a dr that can do the right bloodwork. Antigliadin IgG and IgA, and serum IgA, and ttg. Be sure to get a copy of the results. You might need to see a pediatric GI dr to get the right tests done.

Mel

[flagbabyds]

Probably because you had removed wheat it lowered the blood antibodies enough so it was a loww positive or the doctor didn;t know how to read it

[judy04]

Hi,

If I were you I would also stop the barley because even if

he doesn't react to it, some damage may be occurring.

I agree about more testing, a whole celiac panel, or

stool test thru Enterolab. Hope you find answers soon.