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Testing Children


MistyRG

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MistyRG Apprentice

Now that I possibly have celiac, I am watching my kids like a hawk!!!

My daughter (age 5) had stomach issues a few months back. We couldn't pinpoint a specific time it would bother her (after meals, before meals, when she didn't want to do something . . . :rolleyes: ). Doc ordered ultrasound and blood work (not celiac related), and everything was normal. They put her back on Zantac (she had been on it as a baby for reflux). It didn't really help, and her stomach still bothers her on occasion. She also gets ulcers in her mouth all the time . . . like 4-5 every month (I have read that this could be a symptom).

My oldest son (age 9) is showing some signs, as well. My other 3 sons are under age 2. So I don't know about them yet.

All that to ask what kind of testing should I request from their pedi? Do they do the celiac panel or genetic testing on little ones? At this point, because I am waiting for a biopsy, we are all still full gluten eaters.

Thanks . . . :)


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SPJandE Newbie

I can't be of too much help, but I will tell you my experience (the little bit of it anyway). My 7 year old son's doctor wanted to do the full testing, including the genetic part. They put in for the pre-approval, but insurance refused to pay for that part. So we are only able to get the regular testing done, which we are hoping is enough. He is going this Friday for that.

If his testing is positive (I'll be shocked if it isn't), we'll then test his 6 year old brother. We opted to go that route because he is...well, let's just say it'll take an army to get blood from that child. We're trying to avoid that if at all possible, lol. We already know the baby has Celiac because he has DH (dermatitis herpetiformis) that cleared up once he was gluten free (he had had the rash his entire life before that). Testing is really unreliable under the age of 2 (or is it 3?) so we're not bothering with it for him at this point. We haven't decided if we will test him eventually, but at this point, we are not.

I would just talk to your kiddo's doctor about it and see what testing your insurance will cover, depending on your diagnosis. My son's doctor does the bloodwork first and then if it's positive, they see a GI to do the biopsy. I don't know yet if we're going to do the biopsy, but that's what they like to do. Each doctor and insurance is going to be different though. Come up with a list of questions maybe and give them a call or go in for a visit. Sorry I can't be more help, but good luck to you!

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    • trents
      If you have been on a gluten-free diet for four years, all of the testing with the exception of the HLA one, was a waste of time. Not sure why your physician would have even considered it.  But that doesn't explain your ongoing celiac-like symptoms. It's beginning to look like they are being caused by some other medical issues unrelated to a gluten disorder. 
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      Thanks for the insight!  It has been a whirlwind...very overwhelming and frustrating at times.  But what you are saying makes sense to me. I have been on a Gluten Free diet for 4 years now Its been suggested to me to get a second opinion  
    • heart390
      THANKS again!!!
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      Sorry for rambling on so much. It was not clear to me from you first post that, although you have known for several years that gluten had been causing you distress, that you had already eliminated it from your diet.
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      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago.  The gluten will be my 4th autoimmune disease.  Thanks so much for all your input!!!
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