t-Transglutaminase (tTG) IgG score is high, now what?

[JenneinCA]

My ds11 is very tall and skinny. Seriously skinny. At his check up in September he had fallen off the bottom of the weight charts and the doctor did some blood tests.

 

Ds11 does not have diabetes or thyroid problems. But his t-Transglutaminase (tTG) IgG number is 'High' and is a 'weak positive' for celiac disease. His IgA number was okay.

 

What does this mean? We are supposed to go back in December or January to see if ds11 has gained weight (he hasn't) and get a referral to a gastro-enterologist. (Spell check says that is wrong, but I can't read the doctor's writing to fix). What am I supposed to do now?

 

Signed,

One worried Mommy

[Mom-ninja.]

Take him to a pediatric GI now. I wouldn't wait. The next step is usually an upper GI endoscopy with biopsy.

[mommymilkies]

Wait...A high IgG from tTG is indicative of Celiacs? My 7 yo's IgA was negative, but IgG was over 100 and her endocrinologist said she didn't have Celiacs even though it was flagged as being very high.

[PuddleJumper1]

Take him to a pediatric GI now. I wouldn't wait. The next step is usually an upper GI endoscopy with biopsy.

 

I totally agree with Kleine Hexe. Waiting is doing him no good. I've never heard of a 'weak positive' for celiac. I would think a postive is a positive. The next step would be to have a GI do an endoscopy with biopsy. My ds16 was diagnosed with Celiac in 2007. We were told any and all gluten he was eating was doing damage to his GI track. The intestines heal from the current damage but will still be damaged by eating gluten. He needs someone who knows the GI system and it's diseases. Ds's GI didn't expect too much damage because the blood test wasn't high but when he got in there he said the damage was significant.

[jplain]

Agree with the recommendation to make an appointment with a ped GI now. No sense waiting any longer than necessary.

 

While waiting to see the ped GI, check to see if your son's tests included IgA EMA (Endomysial Antibodies). If it didn't, in your shoes I'd request that test now. Some physicians believe a properly done positive IgA EMA is as good as a positive biopsy. In other words, if my child had a positive IgA EMA, and we trusted that the lab knew what they were doing, we'd assume our child has celiac disease and go gluten-free immediately, without bothering with a biopsy. Note: a positive IgA EMA means the likelihood of celiac is extremely high, but a negative IgA EMA does not rule out celiac.

 

In the meantime your son must keep eating wheat. If he halts or lowers his consumption of wheat, it increases the chance that his biopsy could come back false negative. The damage is often patchy anyway, so a negative biopsy doesn't actually rule out celiac disease. It just means they didn't find it on that day.

 

Good luck getting more answers, and soon too!

Edited November 16, 2011 by jplain

[JenneinCA]

Thank you ladies. I will make an appointment with his doctor for after we get back from Thanksgiving. I need to go through his primary doctor to get a referral to anyone else.

 

I will keep him eating wheat and other gluten. He is actually going to get MORE wheat than usual while we are at my parent's place. My mom likes making pancakes for breakfast and having bagels for lunch.

 

He had a t-Transglutaminase (tTG) IgA and that was normal but no IgA EMA test. I will ask about that when we go to his doctor. Would the possible (probable?) celiac disease explain the low iron levels too? That was the other thing that was notable on the blood work.

[jplain]

Would the possible (probable?) celiac disease explain the low iron levels too? That was the other thing that was notable on the blood work.

Yep, lots of celiacs are anemic at the time of diagnosis. (Though anything that harms intestinal function can eventually result in anemia and other deficiencies.)

[JenneinCA]

Thank you. At least if this is the problem then we can start getting him healthier.

 

The adults in the house were looking to make diet changes in January anyway to try to loose some weight. If we end up going gluten free that might help everyone.

[Jill]

Sounds very likely to be celiac. This is not a surprise, 2.5 million Americans remain undiagnosed so probably your son is one who has gone undx'd for a while.

 

Definitely get an appt with and get copies of the blood tests sent to a pediatric GI or whatever GI you can get your son to. There's a good thread on the various bloodtests and what they may mean here: http://forums.glutenfree.com/viewtopic.php?t=217

 

Thank you. At least if this is the problem then we can start getting him healthier.

 

The adults in the house were looking to make diet changes in January anyway to try to loose some weight. If we end up going gluten free that might help everyone.

 

Especially if you substitute lots of veggies, brown rice, and quinoa and such in place of the breads and baked goods. I've lost a lo of weight since diagnosis; some of that is just because I feel better, I move more and my metabolism is straightened out but some of it is from changes in types of food intake.

 

Also, keep in mind that all siblings and both parents should be tested for celiac. Risk is one in ten for all those but you tend to find "clusters" of celiac in families.

Edited November 16, 2011 by Jill

[JenneinCA]

Just an update I made an appointment for ds11 to go back to his primary care doctor on Dec 3, the Friday of the week after Thanksgiving. I am expecting to get the referral to the gastro doc after that.

[Staceyshoe]

I'm guessing the GI will do an endoscopy to confirm/rule out celiac. Even if the scope is negative, it is possible that gluten is causing issues for him (including low iron and weight). You may want to check out the celiac.com boards. I've found them to be very helpful (more so than the dr!).