Ema Question

[1974girl]

So next month we go back to retest my 9 year old. My 11 yr old already had diagnosed celiac. My 9 year old had a weak positive TTG in December but she lacked the EMA antibody that my 11 year old has. The doctor said to retest in 6 months. So, we have kept her on gluten as much as we could safely do with the other child in the house. She doesn't have symptoms but just testing since her sister has it. We know she is also double DQ2. My questions is: What if the TTG is still weak positive and the EMA is still not there. Do you have to have the EMA? I know it is 99% correct when you do have it. Just aleady wondering what I will do if only the TTG is high.

[Gemini]

So next month we go back to retest my 9 year old. My 11 yr old already had diagnosed celiac. My 9 year old had a weak positive TTG in December but she lacked the EMA antibody that my 11 year old has. The doctor said to retest in 6 months. So, we have kept her on gluten as much as we could safely do with the other child in the house. She doesn't have symptoms but just testing since her sister has it. We know she is also double DQ2. My questions is: What if the TTG is still weak positive and the EMA is still not there. Do you have to have the EMA? I know it is 99% correct when you do have it. Just aleady wondering what I will do if only the TTG is high.

Is your doctor doing the full Celiac panel because if they aren't, they are being irresponsible. Having a negative EMA in a 9 year old is most likely because he/she has not sustained enough damage to their system to register on the test. A weak positive on a tTg means damage has started and will continue to get worse unless that child is gluten free. To see if she is reacting to gliadin in the food she eats, they should be doing the AGA IgA/IgG or the newer DGP test also. They have to be included to get a clearer picture of what's going on.

I will say this....I have a double DQ-2, and failed every test on the panel by huge numbers. However, I was 46 years old at the time and had active symptoms for well over 35 years. Your daughter's sibling is a diagnosed Celiac, she has a double gene for Celiac and a positive tTg. What is this doctor waiting for......massive damage and illness to diagnose? By waiting for them to make up their minds about it, your daughter is at high risk for other autoimmune diseases but you already know that.

I would call it a day and make her gluten-free, like her sibling. Doctors make you sick to obtain a definitive diagnosis and she pretty much has that now. I think it would make it easier for the household if you all were gluten-free as that double DQ-2 means it's on both sides of the family....yours and hubby's. The same as my family and it is loaded with symptomatic people in denial.

I know this can be overwhelming but don't wait for the doctors to give it the blessing...even if your daughter is asymptomatic, which can be common at her age.

[Skylark]

So next month we go back to retest my 9 year old. My 11 yr old already had diagnosed celiac. My 9 year old had a weak positive TTG in December but she lacked the EMA antibody that my 11 year old has. The doctor said to retest in 6 months. So, we have kept her on gluten as much as we could safely do with the other child in the house. She doesn't have symptoms but just testing since her sister has it. We know she is also double DQ2. My questions is: What if the TTG is still weak positive and the EMA is still not there. Do you have to have the EMA? I know it is 99% correct when you do have it. Just aleady wondering what I will do if only the TTG is high.

This doctor is stupid. No, you don't have to have positive EMA for a celiac diagnosis. Get her to a competent pediatric GI who will do a full celiac panel including deamidated gliadin IgA and IgG and a biopsy NOW. It's hard to get positive tests in kids at all so you should be deeply concerned about the positive TTG. Plus not all celiacs end up with positive EMA. It's 99% specific but only about 75-80% sensitive in kids. She is probably celiac and it's really bad for her to keep giving her gluten.

[1974girl]

They did the full panel on her twice. One was normal in March and the other showed weak pos. in December. I just need one more blood test because I do not trust them to be accurate. My first child (celiac) had a TTG of 164 at the pediatrician and two weeks later at the GI it was 7. (Both were supposed to be under 5) We had no change in diet at that time. Neither doctor could explain it except to tell me that one of the labs had to be wrong. They even questioned if the lab had the wrong blood! I won't even know with this follow up to compare it to 164 or 7. They were different labs in different states. Since they were both positive, we went ahead and scoped her but that always bothered me. There shouldn't have been that big of a difference.

If my youngest has a 2nd positive on TTG, then I will feel ok about not scoping and just calling it celiac. Hopefully, this new doctor will also. I have to rescope my oldest next month because in addition to celiac she has EoE. I can't really pay $3,000 for both kids to be scoped. So I am going to just go with it if this next blood test is positive.

[Skylark]

Ah, that's a lot more information than your first post. It makes sense to wait and retest, but EMA is not sensitive enough to only consider her celiac if EMA comes up. Did they run the new gliadin peptide IgG? That's supposed to be really good in kids.

[1974girl]

Thanks for helping me sort this out!

I went and got her results. (Anyone else have a file the size of Texas with results?)

Reticulin Ab (IgA) Negative

Endomysial Ab (IGA)- Negative

Gliadin Antibody (IgG)- 19 (11-17 was "equivical" and over 17 was pos.)

Gliadin Antibody IgA - under 3 (This was neg. since it needed to be over 11 for positive)

TTG IGA- under 1 (pos was 4-10) so we are good here

TTG IGG- 9 (weak postive was 6-9)

So anything IGA was ok. Anything IGG was weak positive.

Gene test- IF ANYONE CAN EXPLAIN THIS ONE LET ME KNOW. I understood it to be double DQ2 from the nurse but can't understand any of it.

DQA1*04:02, 05:01

DQB1*02:01, 04:02

[Skylark]

I won't even know with this follow up to compare it to 164 or 7. They were different labs in different states. Since they were both positive, we went ahead and scoped her but that always bothered me. There shouldn't have been that big of a difference.

I missed this. TTG is reported in arbitrary units that can differ wildly between diagnostic labs. Comparing across labs is like trying to compare apples to oranges. You have to compare to the reference range reported by the particular lab, and retesting has to be at the same lab if you want to compare the absolute number.

As for your other daughter, has she ever had total IgA run? I notice she is consistently negative on the IgA tests. She is positive on TWO celiac tests, not just one. The combination of gliadin peptide IgG and TTG IgA is as specific as anti-EMA. Some people show TTG IgG instead, particularly if they have low IgA. It's a positive celiac panel with >99% specificity if she has low total IgA; it's very likely a positive panel even if her total IgA is normal. We've had board members with only TTG IgG come up with positive biopsies and they didn't even have the anti-gliadin.

She is NOT double DQ2, not sure where the nurse got that idea. She is DQ2.5 and DQ4.2.

[1974girl]

You are amazing! I have been sick thinking she was double DQ2 because I know how bad that is! I know you only need one though. (My celiac child is DQ2 and DQ8 like my type 1 diabetic husband) I still guess that means my husband and I both have the genes for that to happen! We both test negative so far.

They did not run anything else that I know of as far as IgA was concerned. If they did, I didn't get a copy of it. I copied all her results straight from the paper. What should I ask for this next month? Anything new?

Also the 164 test needed be be below 15 and the 7 needed to be below 5. (I just rechecked) It still seems that 164 was wayyyy high for their not to be any damage except for "simplification" in the duadenal bulb. At first, he said that with a TTG that high, he would be able to see it while doing the scope. He did not.

And one final question since you seem so stinkin' smart on test results. Since my celiac daughter shows no symptoms, is there a test I can ask for that will show compliance? She has Hashimotos and I know that can affect TTG and skew it higher than normal. And i honestly don't know which test to compare it to? The 164 or the 7? Or let Vandy do their own test for a 3rd one? I want to see if there is any gluten in her system. In other words, how am I doing at keeping her safe. Is there anything like that? After this...I will hush.

[Skylark]

You don't need to hush. I'm happy to help you and your daughters.

I'd ask for total IgA for the younger and repeats of the positive celiac tests. If she's low IgA (not even necessarily deficient) the IgA tests will always come out negative and you have to look at only IgG tests.

For TTG, you're kind of stuck comparing to the reference range since you got such wildly variable results. Hashi's can skew TTG, but it's not common. Most people with Hashimoto's don't have positive TTG (I don't). If her TTG continues to stay high, you might ask for anti-EMA IgA, which should fall. It's also worth asking her Dr. about gliadin peptide IgG. I believe that one falls gluten-free as well.

[1974girl]

Thanks! I will do this. The waiting is the hardest... I wish there was ano over-the-counter test for complaince. They have urine tests for every drug in the world at Walgreens...I wish they had one for gluten. HA HA!