cmc811

Interesting about dairy. He's always had dairy and I've never suspected a problem. I'll have to look into that as well.

And just so there is no confusion, the above symptoms are my son's and his test was negative. My test was the positive.

I have a 5 year old son that I think may have celiac disease. Here’s his history:

Born healthy and fairly uneventful infant history other than minor reflux that was treated with Zantac until he was 12 months. At 20 months old his hair started falling out and 2 months later he was officially diagnosed with Alopecia Areata. He was virtually bald for a year and then his hair grew back and he now gets occasional patches of hair loss that come and go.

Since that time a number of symptom have come and gone and I’m start starting to put them all together. They include:

• Complaining of stomach pain periodically
• chronic constipation even though he has daily BM
• Waves of nausea
• Terrible behavioral outbursts
• Flea-bite looking rash that comes and go but always appears in the same spot – lower back and up around his right shoulder/armpit – and is really itchy. Hasn’t been blistery though.
• pale looking with dark circles
• complains of being tired a lot even though he sleeps from 7:30p-6a
• anxious about anything and everything
• new fears/worries
• slow growth – always been on the small side but was following the same curve. Now has only gained 2 lbs in a year and dropped from the 28^th percentile down to the 16^th.
• he used to get frequent canker sores but that seems to not happen as much now
• complains about leg pain on occasion (I’ve always just assumed he was growing)
• low red blood count but normal hemoglobin/hematocrit
• eczema
• asthma
• heart murmurs that a cardiologist said were innocent by listening
• normal iron and other metabolic numbers

I requested a celiac panel and his PCP ordered only the IgA, Serum and tTG, which were both normal. However, I was tested as well and had a weak positive tTG that I’m still waiting for follow up on.

So, what next? His pediatrician doesn’t think anything more needs to be done. She has an answer for all his symptoms individually but isn’t looking at them as a whole. I’m not sure what I should even be pushing for at this point. What other tests (EMA, DGP, etc) should I be persistent about?

Thanks for your advice. Anyone want to weigh in on what to ask for in regards to my son?

Just wanted to mention that I don't trust the "weak positive" thing.  When I was tested, the lab that did my bloodwork considered anything 11 and under as negative (different labs have different numbers).  I was a 13.  So I could have been considered a "weak positive".  But when I got my biopsy, I had moderate to severe villi damage.

 

This leads me to believe that positive is positive.  There doesn't seem to be much of a correlation between the actual number and the extent of the damage.

I agree that a weak positive definitely needs to be considered positive and further testing needs to be done, but what specifically should I ask for? Straight to a biopsy?

And for my son, should I demand the DGP since it is typically better for kids since his tTG was negative?

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. ..)

Cara

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.

Hello!

I have a 5 year old son that I believe is showing a lot of celiac signs. I talked to his doctor about it and she ordered a CBC, Metabolic Panel, Tissue Transglutaminase Antibody and IgA, Serum. All were normal. Specifically the Tissue Transglutaminase Antibody was <1 and the IgA Serum was 120 (24-300 is normal).

I also am having symptoms so I was tested as well but my doctor only ordered the Tissue Transglutaminase Antibody which was 7 and considered a weak positive (anything over 4 is positive).

We both have appointments next week but what should I ask for? Obviously I want to persue more testing for myself since there were antibodies detected, but should I go right for the biopsy or would other bloodwork be beneficial?

For my son, I know false negatives are common in young kids but at 5 would he fall into that category? What else, short of going gluten free and seeing if he improves, should I ask for?

Thanks!