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Had The Blood Test...continue Eating Gluten For More Possible Tests?

TammyTE

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TammyTE Apprentice
TammyTE
Posted

My 2 year old was mostly grain free from 10mos till about 14mos then I would say 100% grain free till she was 22months old. At that point we added all grains back in the diet. (We were doing this diet for another dc and this is just how it worked out for her.)

So she was eating gluten daily since late August/early September. She had a blood draw late October and tested positive for gluten intolerance and possible celiac. Her Total IgA leve was 68 (Range 17-94) but they said because she is only 2yo she could still be celiac and it just wasn't adjusted for her young age.

I have her scheduled for a GI appt on January 11th. As of last week she has been gluten free. (Except for a christmas cookie she took off the dessert table at my mom's house. Grrrrr) But now I am wondering if I should keep her gluten free or if I should give her just a bit here and there in case they want to do more testing.

I am also getting my 8 year old son seen as well. He just got the blood test and I don't have the results yet. He was also eating gluten for the same period of time but had been gluten free for a week before his blood test last Friday. On Thursday night and Friday morning I had him eat some wheat for the test. I am hoping that was enough for the blood test.(?) Since he had only been gluten-free for a week I assume so, but please tell me if you think it would skew the results.

So what do you think? Keep them gluten-free or not?

Thanks so much!

~Tammy

Mom to five

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shadowicewolf Proficient
shadowicewolf
Posted

Not enough I believe. The general reccomended time peroid is anywhere from 3 weeks to..... a few months? Yeah. Moreso if you wish to do a biopsy.

squirmingitch Veteran
squirmingitch
Posted

One is supposed to continue eating a regular gluten diet all the way through testing & that includes the endoscopy.

TammyTE Apprentice
TammyTE
Posted
  • Author

Not enough I believe. The general reccomended time peroid is anywhere from 3 weeks to..... a few months? Yeah. Moreso if you wish to do a biopsy.

So you are saying my son didn't have enough gluten in his system for the blood test? (I am very frustrated because he was supposed to have gotten this test earlier but they failed to check the box requesting it...sigh.)

One is supposed to continue eating a regular gluten diet all the way through testing & that includes the endoscopy.

By "regular" gluten diet do you mean a piece of bread a day or??

Gemini Experienced
Gemini
Posted

So you are saying my son didn't have enough gluten in his system for the blood test? (I am very frustrated because he was supposed to have gotten this test earlier but they failed to check the box requesting it...sigh.)

By "regular" gluten diet do you mean a piece of bread a day or??

Tammy....my advice to people who want testing done is to "gluten up"! That means including gluten at every meal for best possible testing results. Feed your children as much gluten as they can stand.

Good luck!

TammyTE Apprentice
TammyTE
Posted
  • Author

Tammy....my advice to people who want testing done is to "gluten up"! That means including gluten at every meal for best possible testing results. Feed your children as much gluten as they can stand.

Good luck!

Really? Wow! My poor kids are going to be so confused. LOL

So do you guys think even if my son's blood test comes back negative I should do more testing for him with the GI doc since he shows signs of gluten intolerance/celiac? I scheduled the appt for both of them because they are the two I have had tested so far. My other three dc are scheduled in a couple weeks to get the blood test. They are still eating gluten, but not much because we were planning to stay away from it for the other two and that's just how it works out at meal times.

In hindsight I wish we had had them all tested at the same time to get it over with!

squirmingitch Veteran
squirmingitch
Posted

If the test comes back positive you will have your answer as there are virtually no false positives. If the test comes back negative you can not be sure it is truly negative.

We see this so often! People go gluten free before testing, people go gluten light before testing, people think that eating a cracker the morning of the test will be enough........

It's a real shame. Often the doc either doesn't know to tell people they need to be eating a full gluten diet or just fails to tell them.

You might want to consider having them all tested at the same time (& includes re-testing of son if needed) say in 3 months time when everybody has had time to get good & glutened up. It's a thought.

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