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Getting Under Control

MySage

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MySage Rookie
MySage
Posted

My 22-mo daughter was dx 2/05 combined with intessuception. She had her 2nd TTG screening and levels dropped from 103 to 70. Her new doc (closer to home) seems to think this is good (because it's dropping), but "normal" is less than 19.

She as been 6-mo gluten free. How long does it take to get "normal" or does it ever get normal for a Celiac patient? Her weight gain, alertness, stools have all been better since starting the diet. But I'm concerned that the levels are not dropping they way I feel they should. And I'm feeling that I'm missing something and she's getting some form of gluten.

Because she is only begining to talk, it is difficult to know if she has a belly ache, teething or just having a 2-yo moment. Or maybe her body's healing at a slower rate???

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KaitiUSA Enthusiast
KaitiUSA
Posted

Her levels are going down so thats good but for 6 months gluten free I would think they would be lower then that. Could there be any little bit slipping in?

SueC Explorer
SueC
Posted

I would carefully rescreen EVERYTHING she is eating, but it just might be taking awhile for her level come down. My level dropped from 187 to 25 in 3 months but kids just might take longer. If you are certain that she is 100% gluten-free I would ask for another screen in 3 months and see where it is. But the good news is it is coming down, and she is doing better :)

Merika Contributor
Merika
Posted

It sounds like maybe she is getting gluten somewhere. Levels should be normal within 6-12 months, but I would think even sooner for a kid. 12 months is the max I think, and considered somewhat long.

Look at other kids for sources, crumbs, things on the floor, hand lotion YOU use, hair products, play dough, etc.

Merika

MySage Rookie
MySage
Posted
  • Author

Thanks everyone for your inputs. I think I'm going to do a another complete checklist again. I gaining my knowledge about what foods are gluten-free based on these forums as well as Clan Thompson, and obviously reading the ingredients. But there seems to be so much "hidden" things, MFS, Malt, etc.....

In your experiences, are these sources of information valid and accurate? I'm reading these forums were for instance, "Kraft hides nothing." But when I called them to verify if Velveeta cheese was gluten-free, they just kept telling me to read the label. It really didn't give me a warm & fuzzy feeling that they actually knew what was in their product??? I got the same response from McCormick's Spices.

Is there a specific person that you need to ask for when inquiring about product ingredients to get a more "matter of fact" answer?

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