Blood Test Result For 18 Month Old

[katiekay]

IgA 47^ ;units=mg/dl ;range = 14-105 ;normal

TTG IgA 3^ ;units=units ;range = 0-19 ;normal

GLIAD Ab, IgA 2^ ;units=units ;range 0-19 ;normal

This test was on an 18 month old who had previously to the test been almost completely gluten free for 6 1/2 days (right up until moment of test). There were some bites of things here and there given to her by her dad.

I realize this is a negative test result. I also know it's hard with an 18 month old to get good results.

I am also noticing that this was not the complete panel. When we went for the test I had never heard of celiacs and didn't know to request the full panel. My doctor said that the hospital where I went to routinely does only that test but has assured me that the important one is the TTG IgA anyway. I had my blood test today and he assured me that it will be the full panel. (they drew my blood right at the office. He just doesn't draw blood on babies)

My husband is convinced she does not have celiacs. The doctor wants her to go on a gluten free/lactose free diet for 2 weeks to see if she gains weight. My husband would like her to instead do a 2 week continuation of normal eating and see if she gains weight. She is still not back to her 21.4 lbs. that she was at before she had a week of diarrhea and throwing up. He says if she does not continuously gain and then gain past 21.4 (since she will probably get back to 21.4 easily due to not having diarrhea anymore) then we can try a strict gluten free diet. I am looking to see her get to 22.5 before I start resting easy that she doesn't have celiacs.

I appreciate all the help I have gotten here over the past few days. Wondering if anyone has any thoughts on the test since I've read sometimes a doctor will overlook something. All her numbers look pretty low to me except the first one so I am curious. thanks!!!

[Cara in Boston]

Our doctor (a celiac specialist) thinks my son (6) has celiac based on his blood tests - he only tested positive on the IgG tests and completely within range on all the IgA tests. He goes in for an endoscopy next week but we already know he is at the very least, gluten intolerant. Not sure why they didn't do the IgG tests. Did they do a total IgA test too? Sometimes kids don't make enough IgA and if that is the case, all the IgA tests would be useless.

It is very confusing. My advice would be to stick with your instincts. Keep in mind that you can test negative on everything and STILL have it. And, even a short time being gluten free can make all blood tests appear negative.

It is so frustrating to get all these tests done and really be no closer to finding an answer than when you started.

Did she seem to improve in the few days she was gluten free?

Cara

[katiekay]

hi. I didn't understand any of what you wrote... LOL! So you mean the TTG test that he says is the only important one isn't important? Or is that what you are talking about?

When I tried her gluten free I was doing it related to wetting the bed (we do Elimination Communication). She had been dry and able to go 10 hours at night and after increase in wheat she started to wet the bed and dribble everywhere without making it to potty. After we went gluten free she did great.

We have gone back to wheat and she is having some belly aches, gas, back to not sleeping as solidly, and not good on the potty front.

[mushroom]

I think Cara was thinking they did not do the total IgA, which they actually did - that was the first test, meaning she makes normal quantities of antibodies. If this were not in range it would invalidate other IgA tests. (It is a used to validate the other results.)

Doctors have been trained that the TTG test is the most important test, but this is an older test and lots of people test negative on this and positive on some of the others. The Endomysial Antibodies (EMA) is a newer test but hard to process correctly and sometimes has to be sent to a different lab. The newest test and the one that seems to be the most accurate is the Deamidated Gliadin Peptide (DGP). Dr. Rodney Ford, who is recognized internationally as a pediatric celiac expert, prefers this test for children.

[katiekay]

Hi Mushroom,

Not sure if you will read this but I appreciate all your help with all my questions. Thank you so much for taking the time to help me out with this!!!

I am going to request the Deamidated Gliadin Peptide test for my daughter. She was pretty much off all gluten for 6 1/2 days... back on gluten for 3 1/2 days. She is having noticeable gas, cramps etc. How long do you think I need to wait before I get her retested.

[mushroom]

I am going to request the Deamidated Gliadin Peptide test for my daughter. She was pretty much off all gluten for 6 1/2 days... back on gluten for 3 1/2 days. She is having noticeable gas, cramps etc. How long do you think I need to wait before I get her retested.

Hi Katie: Have them run both the IgA and IgG versions of the DGP. It is hard to say how long she needs to be consuming gluten. It depends how gluten "lite" she was before being off all gluten for a week. It is always problematic when there have been gluten free periods. I would say as long as she (and you) can stand it, to get the best result, because the antibodies start to disappear when they are no longer exposed to gluten and it takes them a while to come back in full force. Same for damage in the small intestine; it starts to heal and it takes a while to redamage it to show up on endoscopy if you go that route. It's not just like turning a light switch on and off. If she had been totally gluten free the recommended time is two months, to give you a frame of reference.

[katiekay]

awwwwww 2 months. if only, if only I hadn't done the gluten free thing due to potty stuff. i just had my blood test this afternoon and i bet i'll get a negative too.

thank you. that does put it into perspective.

Have to ask... not for my daughter but for me to be tested... would it show up on a different type of test? Like I've heard about scope or something... would it show even though I was gluten free for 6 1/2 days? I ate one wheat item and that's it for the whole week. Now these 3 1/2 days I ate wheat stuff every meal... would it still be 2 months even for a scope type test??? And what are the alternate tests?

And why do I have a status bar under my name labeled "warn status"? I don't see that on anyone else's... it is blank though

[Cara in Boston]

I don't think I'll be much help because we are still waiting final tests. But I can confirm that the results can be all over the place.

My son tested positive on the IgG and the TTG IgG but negative on all the IgA tests (even though he makes enough, it was still negative.) On his second round of tests he was positive for the DGP IgG, but negative for the DGP IgA.

On my tests, I was negative on all the IgG tests, but positive on the IgA and TTG IgA.

On my follow up blood test, I went from "very" positive to negative after just 10 days gluten free. The doctor didn't seem to think things would change that quickly, but there you go. I am now waiting three months to start all over.

When we started this process (December/January) I was so happy to have what I thought was finally an answer. Now, we won't know for sure until May, and even then we may never really know.

Hang in there . . .

Cara

[katiekay]

Cara, I am so new to this... why don't you consider yourself positive? You had a positive and then your body healed so well by getting rid of gluten. Just trying to figure out about the testing... is there something I'm missing that makes you need to add back gluten to go get retested?

[Cara in Boston]

I guess it doesn't really matter what the test says in May, I'll go gluten free anyway because I believe it will help. I've only had symptoms for about 5 years and they are pretty mild (compared to what I read here) so another few months should be do-able.

If I had a firm diagnosis, my mother and siblings would be more likely to take it seriously and get themselves tested. As it is now, they think I'm already a "food snob" because we eat organic . . . to them eating gluten-free is a choice or a fad . . .

Even my doctor seems skeptical now . . . wants to consider IBS. It just seems like it will be easier to get follow-up care (nutrition consultation, etc.) if the diagnosis is clear.

Cara

[Jestgar]

And why do I have a status bar under my name labeled "warn status"? I don't see that on anyone else's... it is blank though

Everyone has one; only you can see yours. We use them to remind people about breaking board rules: promoting your own site, disrespect to other members, etc.

board rules

[katiekay]

UGH! Thank you for your help. I keep thinking I will go gluten-free and then something makes me wait. My skin is so itchy and my stomach is a mess. I've even had a rash show up on the inside of my elbow. It should be an easier decision for me but people are going to be like that with me... roll their eyes and think I'm overreacting. I had my blood test yesterday and it is killing me to wait. I should know something Thursday but I have a feeling it's going to be negative. And I've realized being pregnant that the only option I have is a blood test.

Anyone ever heard of the genetic test?? Like you either don't have the gene and wont get it or you have the gene and could develop it. Any thoughts on this test? I guess I'm looking for an easy answer.

[tarnalberry]

The genetic test doesn't, in the US, test for all of the genes associated with celiac, so - IMHO - it's kinda worthless.

Being pregnant, I see NO reason to wait. There is only a potential negative to staying on gluten while pregnant if you might have celiac disease (antibodies attack the placenta and cross to the baby), and - assuming you choose to eat an otherwise healthy and well rounded diet without relying on lots of processed foods - not really any dietary positives to staying on gluten. (Yes, a big difference in convenience, but convenience isn't really the most important thing at the moment.)

[katiekay]

could you also tell me if typical blood test, celiac panel, will test for all allergies to wheat... I mean if I have allergy to gluten but it attacks another part of the body other than the gut will the blood tests pick that up??? Hre is the website I've been looking at with info about tests. He shows videos on another page and one talks about it attacking other areas... like getting hashimoto or add etc.

Open Original Shared Link

[Cara in Boston]

I didn't realize you were pregnant.

If I were in your situation (pregnant and wondering if I was gluten sensitive) I would definitely start the diet right away. You can always do a gluten challenge if you find that you want to try testing at a later date, but after going gluten free you may already have your answer. Do what you need to do to be healthy and feel good NOW, when it matters most.

Also, if your rash on your elbow could be DH, I think I read somewhere they can test that and determine if it is celiac related. (Not sure about this since I don't have it.)

My son had the genetic test done. Didn't really help us. He has one gene so he may, or may not develop celiac disease. Once again, back where we started. I guess it is helpful if his endoscopy comes back negative. We have MORE reasons to believe he has celiac (symptoms, 2 blood tests, genetic marker) than reason to believe he doesn't, but it still isn't certain.

[Cara in Boston]

What about the test from Enterolab? Again I don't know much about them, but I think they are done on a stool sample - not invasive.