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texasblue

4 Y/o Daughter With Hla-dq8

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I have been searching these boards and the net this last 2 weeks trying to gather more info.

The background: My middle daughter, she'll be 5 in June, is being evaluated for possible Celiac. The question of her having an intolerance was first brought up last spring when we thought she might have a severe lactose intolerance. She had been taking Lactaid milk since she was about 2 and we limited but did not eliminate dairy until last spring. She was starting to have explosive diarrhea then and I was noticing that her growth had really dropped off since she was 2 years old. (She was born in the 95th % and has slowed drifted down to now around the 20th percentile. Her weight was at the 95th as well and is now down around 70th so no, she's not a waif!). So, thinking that lactose was the issue, possibly, we took her off all straight dairy but did not hunt for milk in baked goods. She had a little improvement at first (with her gut issues, not with her growth) but has been starting to have a distended belly, lots of gas, and loose/diarrhea stools again in the last several months. A few weeks ago she was extremely distended and was having frequent complaints of her belly hurting so we took her back to the pediatrician to try and evaluate further. The pedi consulted with a couple of pedi GI docs and said that they would want to rule out Celiac first. So, the lab work we have so far is:

Total IgA level #1: 16 = Low

Total IgA level #2: 21 = low

IgA 1 = 21 low

IgA 2 <1 low

Total IgG =964 (normal between 353-1350) with IgG normal for subclasses 1,2 &3, borderline low for 4.

IgA TTG<3 (negative <5)

HLA-DQB1 03(DQ8)

HLA-DQB1 - (DQ-)

HLA-DQ2 negative

HLA-DQ8 positive

CBC panel was completely normal except for slightly high platelets.

TSH 1.63

She's scheduled for a small bowel biopsy for 4/17 but after reading so many posts on this board I am wondering how likely it will be that she even gets a positive result. Can anyone help me interpret these results? I know the DQ8 gene is the rarer of the two and that the low IgA is more common in celiacs than in the general population so I am guessing her chances of having it are greater than most, right?

Any light anyone can shed on this would be appreciated!

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I am not familiar with the numbers. Some of the moms should be here soon. I can reiterate what you probably know, testing with a biopsy is not always reliable in young children.

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Yes, celiac is more common in those 10% who have low IGA. One would then expect them to run the antigliadin and tissue transglutaminase tests in the IgG version.

They only checked for DQ2 and 8. They found the DQ8 which is 0302. DQ7,8 and 9 are all DQ3.

0202 and 0201 are both DQ1. 05* and 06* are DQ5 and 6, which are subtypes of DQ1.

Tehy probably know which subtypes she is, but did not tell you. there was a posting here or on another boeard a year ot so ago, someone talked to someone in charge of a lab that does these tests, and they do know the types, but the question was only to report if there is DQ2 or 8.

Anyway, it does look like celiac with those tests, but the Ttg- test and the biopsy are much more specific.

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Yes, celiac is more common in those 10% who have low IGA. One would then expect them to run the antigliadin and tissue transglutaminase tests in the IgG version.

Thank you so much for replying. My head is just spinning lately! Her biospy isn't until the 17th so I feel like I have a lot of time to think and wonder (and pray!).

You know, I was wondering why they didn't run the IgG AGA and TTG as well. It was my general pediatrician who was ordering the tests based on what she understood the GI docs to say. At our GI consult he mentioned that there were a few more tests he would have ordered but I guess she decided not to do them yet. I think after the DQ8 gene showed up they figured the best course of action was to go for the biopsy. At our GI consult on Thursday he pretty much said that he thought she was "a good candidate" for being Celiac based on her symptoms. Especially her short stature and drop on growth curve. There is some question whether she has difficulty processing other "sugars" like maltose, sucralose, etc. When he does the biopsies he is going to send one to check for an absence of the enzymes related to those sugars.

Do the subtypes matter very much? What kind of light will that shed on her probability of having Celiac?

Thanks again!

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