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Can I Have Some Help With Kiddos? Lonnnggg.

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Hi!! I am a long time lurker... and have a few questions.

I have celiac, been gluten-free for 5 years. My endo was neg, cause I was seen by a witch doctor (LOL) who just diagnosed me with a nervous tummy and didn't believe me, so I went off gluten for 6 months THEN they tested me. He told me to go back on, but I refused, cause I felt so much better!

Anywho, I have a 5 year old. She is gassy, has asthma, she is heavier (off the charts on height AND weight)... Ped GI tested her with a blood test, said her levels were high on this test, but it wasn't a very good test, she is ok... no celiac. HUH?

My 2 1/2 year old. Not gained but one pound in 8 months, she is anemic, hair loss, constipation (mirilax 2 capfuls a day per dr's order).... she is dropping percentiles. She has been tested and her IgA was low, so we saw an immunologist, who told me these tests are not accurate for under 5's. She was tested for celiac via blood and came back negative.

I am frusterated. So, I took my 2 year old off gluten, she is a week off it now. I am wondering about my 5 year old.

I never knew constipation and being heavier WAS a sympton of celiac....

any ideas or more offerings for when I go to the ped in 2 weeks?

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My 6 yr olds only symptoms were constipation and belly pains and she is in the 98th percentile for ht and wt also. So yes the Celiac symptoms are varied.

Our GI was running a battery of blood tests which was how we were diagnosed (the constipation was going on it's year and half mark). Then she was scoped.

If you really want the scope done which can show more accurate results you need to stress your position with the Dr. Even if you have to 'EXAGGERATE' your anxiety over it, to get the test ordered and covered by insurance.

Good luck!

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Yes, advocate for yourself. Some docs don't understand the tests even if the positive is staring them right in the face. Last time I heard,a positive was a positive no question, where the blood tests fail is with false negatives. So if your kiddo's was high, that's significant.

As for constipation, that is quite common. I get C. lots of inflamation and distended abdomen. Even though I had urgent loose stools every am after I woke up, things were generally backed up most of the time. Sounds like a strange contradiction but true. Now, when I avoid all the stuff that my body doesn't like, I have 3 well formed BM's a day. Sorry if TMI.

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