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My Challenging 5 Year Old

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Posted 30 November 2013 - 04:59 PM

My son (5 at the time) had ZERO symptoms and his drastic change in behavior was the thing that brought us to the pediatrician. (Strangely, I had all the classic symptoms but had never considered Celiac Disease.)

He went from being a well behaved boy (no angel, but certainly within manageable limits) to someone we hardly recognized. Tantrums lasting hours (over the smallest thing), meltdowns over common frustrations (putting on socks) and a lack of interest in things he formerly enjoyed ("everything is boring") He used to rush home to do all his homework, suddenly it was a struggle - ending in a tantrum or meltdown. Consequences didn't matter, reasoning didn't work, it was clear he was not in control of his behavior. This went on for several weeks. We got to the point where we didn't want to take him anywhere because his behavior was so unpredictable. Strangely, the teachers at school (Kindergarten) saw NONE of this and were shocked when I described his behavior. He was somehow able to keep it together at school, but not at home.

After about a month, he had three days in a row where he complained of a stomach ache. Then they went away.

I had already made an appointment with the doctor so we went and she couldn't find anything wrong with him. When I mentioned the terrible behavior we were dealing with, she thought to give him the blood test.

He was positive on some, negative on others. His biopsy ended up being very positive.

He was back to his usual self within weeks of being gluten free and now we see the tantrums only about once a month (cross contamination? Not sure. ..)


I know this is an old post, but I feel like I could have written this exact post! We are just starting the testing process and I am researching like crazy. You say he tested negative on some and positive on some. Would you mind sharing the tests he had done and the results? Only thing so far my son has had is the tTG and the total IgA and they were both negative.

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Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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