Large Drop Then Very Small (Ttg)

[StephanieL]

So I took a long break after I had a meltdown. I will try again. Thanks for understanding

My 4 year old has been gluten-free for about 13 months now. His ttG's were at 126 or something to start with an "inconclusive" biopsy. We were given the options of going gluten-free or biopsy yearly. We chose going gluten-free.

At 6 months his levels were down to 48. 6 more months and they only dropped to 36.... I am at a total loss. Have ordered the testing strips for the very few foods not labeled gluten-free or no word from the manufacturers.

Any ideas? Is a leveling out like this "normal"?

TIA

[StephanieL]

??? Again, nothing? No ideas?

[Jestgar]

Since every body is different, it's really hard to know what 'normal' is. What's the range for the test? If 40 is close to the bottom, then the numbers might bounce around, but any difference you see would be an artifact of the test, rather than a true measurement of a difference.

[StephanieL]

Isn't the range <20 for a ttg? So no, it isn't near the low end.

[sa1937]

The reference ranges for tTG levels vary depending on the lab.

[StephanieL]

The reference ranges for tTG levels vary depending on the lab.

Go it. Thanks! This paperwork says <20.

[Mack the Knife]

So I took a long break after I had a meltdown. I will try again. Thanks for understanding

My 4 year old has been gluten-free for about 13 months now. His ttG's were at 126 or something to start with an "inconclusive" biopsy. We were given the options of going gluten-free or biopsy yearly. We chose going gluten-free.

At 6 months his levels were down to 48. 6 more months and they only dropped to 36.... I am at a total loss. Have ordered the testing strips for the very few foods not labeled gluten-free or no word from the manufacturers.

Any ideas? Is a leveling out like this "normal"?

TIA

This has happened to me too. My Ttg was 120 when I was diagnosed with a positive biopsy. I got tested again after 12 months on a strict gluten free diet and it had only dropped to 75. Now after 18 months it has crept back up to 81.

Apparently it is not unusual for it to take a while for levels to return to normal but 18 months is too long. So I am jumping through all the medical hoops to figure out what is wrong and trying to figure out if I could still be getting gluten from somewhere (I live in a gluten free household).

The most common reason for levels not going down is ongoing gluten intake (accidental or deliberate).

Has your son had a follow up biopsy yet?

[StephanieL]

The most common reason for levels not going down is ongoing gluten intake (accidental or deliberate).

Has your son had a follow up biopsy yet?

With the inconclusive first biopsy, I am not willing to do a follow up. Also, when we talked to our GI this week she said she wouldn't do that for at least another year. As for accidental ingestion, we have a long list of food allergies as well. I would think we would have seen allergic reactions before if x-con was the issue. He is to young to "cheat" so I know it isn't that either. Plus, the one time he was "glutened" we KNEW it (with just on bite of a regular sandwich thanks to a clueless Grandmother/babysitter!)