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Open-minded Doctor . . . Wow!

Darn210

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Darn210 Enthusiast
Darn210
Posted

We just got back from an appointment with a Pediactric GI. I just wanted to share how it went . . .

Here's the background: My daughter was diagnosed in April with Celiac disease. Because of her diagnosis, my son had a blood test in July. He has no GI symptoms but he is extremely small for his age. He is 8 and about 43 pounds and 47 inches tall. He is below the 5th percentile curve. The pediatrician was not concerned since he is growing (and the curve is the right shape) and figured at somepoint, he would catch up. DH and his brothers were all pretty skinny kids (not short though).

His blood tests came back normal for TTG, High for IGA, and positive for DQ2. Since I have already gone through this with my daughter, I felt pretty well-informed walking into that appt. I was expecting the doctor to say he wanted to do a scope. I was pleasently surprised. He laid it all on the table.

He said that the TTG is the best test. It came back normal but that test was established based on the test results of adults. The DQ2 is positive which puts him at risk, but so is 1/3 of the population. The high IGA all by itself would not lead him to jump to any conclusions because there are a lot of false positives with that one. If my son had come in on the 50th percentile growth curve, he said he would have told us to wait to see if any symptoms develop and do regular screenings.

However, since he is small, here were his choices. Watch for any GI symptoms to develop and repeat the blood testing in 6 months. Or scope him - which he admitted wasn't what he wanted to jump in and do (that was the first big surprise for me) - he talked about it being a patchy disease, also if this is early on, there might not even be any real damage to notice, yet. He seemed to not like his own choices. He didn't want to put him on a restrictive diet if there was no need and he didn't want to sit around and wait for the damage to accumulate.

My husband and I threw out the alternative of a trial gluten-free diet for 6 months to see if he starts growing. I was expecting to hear something about that interfering with further tests but he was really excited and pleased. It wasn't something he would normally do because of the burden of the diet but we are already doing it for our daughter so it wouldn't be hard for us to handle. His estimate is that by the second month, we should start to see some significant growth. If we do - we'll have our diagnosis. If we have no real growth after 6 months, then he can go back to his current diet and we will monitor with blood tests and watch for symptoms (and may want to check other things for growth).

I was pleasently surprised that he is willing to go forward with a dietary response as a means of diagnosis (my second big surprise). You don't see that too often. Also, I think in our six month follow-up, I will encourage him to offer that option more often. I really don't think the diet is as hard as he thinks it is.

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dlp252 Apprentice
dlp252
Posted

Congratulations, lol! Sounds like a good doctor!

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    • trents
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