Can Celiac Bloodwork Change?

[momto1]

Hi, my husband has celiac, and we kept my daughter gluten-free til about 12 months of age. Then around age 2, Dr did the bloodwork that came out completely negative (I was told) We have changed pediatricians since then, and my current dr doesn't have those records.

Now, my daughter is a very healthy 9 year old, but has been having sharp tummy pains off and on = usually middle of the day, sometimes in her back she says, maybe lasting 1-3 minutes.

So, my question is - if the bloodwork came out negative at age 2, would that change to now? Doesn't it check for genetic predisposition?

Current dr is going to order new bloodwork just to be sure.

[lizard00]

Hello and welcome!

Depending on what type of tests they ran on your daughter, yes they can change. At two years old, blood tests are often inaccurate. If they did a genetic test, that would show whether she carried the genetic marker for Celiac, but many people carry the marker and do not ever develop Celiac.

If they only did blood tests, having her retested was a great idea. It takes time for the intestinal damage to occur to the point that it shows up on the tests if, in fact, she does have Celiac.

Please stick around and make yourself at home. Ask any questions; there are so many people here with so many different stories that can really be a great deal of support.

[tarnalberry]

blood work can change for a number of reasons. here are four that apply to your case:

1. tests in children under two are unreliable and generate false negatives at a higher than normal rate

2. celiac isn't "on" from birth - it can develop at any age; tests before that will be negative, after will be positive

3. tests from different labs use different reference ranges; the same result may show positive for some labs, negative for others

4. it may take time for enough damage to occur for the antibodies that are usually tested for (they don't usually do genetic tests) to show up in the blood stream

[momto1]

WOW, just found the ped that ran the original results and faxed them to me.

Endomysial Antibioties, IgH - None Det

Endomysial Antibiodies, IgA - None Det

Transglutiminase IGA Autoantibiodies = < 10 U/ML (Reference Range <10)

Endomysial Antiboidies, IgA G None Det

Anyone care to interpret for me?!?!?!

THANKS SO MUCH for all your input!

[momto1]

celiac isn't "on" from birth - it can develop at any age; tests before that will be negative, after will be positive

So does this mean she should be tested yearly? (Providing that this time we come back with negative results?)

[Jestgar]

If she has suspicious symptoms, absolutely. Otherwise, probably not. She may never develop Celiac, and stressing about something that may never happen isn't good for you either.

[Ursa Major]

Obviously, your daughter has developed suspicious symptoms. Sharp stomach pains sure aren't normal! If her tests come back negative, I would have her tested with Open Original Shared Link, as their tests will detect antibodies BEFORE the villi are pretty much destroyed, while the blood tests are only accurate when there is lots of villi damage already.

And, of course, there is always the most accurate test of them all, which is trying the gluten-free diet to see if those stomach problems go away.

[Worriedtodeath]

How old was she again when tested? Did they run a total iga count? IF she is IGA deficient, then some of the Celiac tests will come back negative no matter what since they depend on IgA numbers. I'm wondering why nothing was detected. Even my daughter's .1 was recorded on her lab results. But if this was several years ago as I think I read, then that may be all they did then. Our latest results had the following tests run

Anti-gliadin IgG ELISA (AGA IgG)

Anti-gliadin IgA ELISA (AGA IgA)

Anti-human Tissue Transglutaminase Iga Elisa (TTG IgA)

Anti-Endomysial IgA IFA (EMA IgA)

TOtal Serum IgA by NEphelometry (TOTAL IgA)

We had one run 4 days off of wheat and one run 68 days on wheat. The numbers went up some. We will have another run at some point to see if they go down.

i was told to make sure the lab used was Prometheus since they do a lot of this type of testing. And to make sure you get a total Iga count to make sure that is normal.

Stacie

[KaitiUSA]

Well if you keep them gluten free and then get bloodwork done then the it is likely that the bloodwork will show up negative. That is the way they keep track of how celiacs are doing with their diet. Like when I had blood tests done that showed positive they checked me after being gluten free for 6 months and it came back negative and thats the way they monitor compliance because not everyone can tell from symptoms.

[momto1]

I checked back at the records. We kept her gluten-free till about 10 months. Her weight was dropping a little bit and the dr was worried that she wasn't getting enough to eat. Knowing that a gluten-free diet would not show up on a bloodtest, we put her on reg food, and at 13 months did the bloodwork. (4 months on reg food)

I repeatedly asked the pediatrician over the years if the test needed to be re-done, and every one told me NO, that bloodwork doesn't change.

Now, Im mad at myself for not persuing it further.

I only have results from those 3 tests done in 2000. The "interpretative data" sasy - Endomysial antiboides are screened using an ELISA tissue transglutiminase (tTg) assay. All samples wich are positivtitered by IFA. The endomysial antigen has been identified protien cross-linking enzyme known as tissue transglutimines

[aikiducky]

Here in Holland I think at least some doctors recommend that family members be tested every five years or so, unless they have suspicious symptoms and should be tested sooner. Why don't you just request the blood tests now, just in case?

Pauliina

[Fiddle-Faddle]

Here in the US , they only "recognize" two Celiac genes--but in Europe, I think they recognize 7 genes as being associated with celiac. Definitely something to keep in mind!

I totally agree that sharp tummy pains are NOT normal. Something is causing them.

My kids' occasional tummy pains disappeared on a gluten-lite diet (I was gluten-free, and didn't want to cook 2 dinners or breakfasts, so they only had gluten in their school lunches)--that clued me in to the need to have them go totally gluten-free.

[brill]

Even though your husband is Ceoliac, it could be possible that your daughter isn't ceoliac... She still may however be Gluten Intolerant..

There is only a small number of people that are ceoliac...

I am Ceoliac, but my sister is only Gluten Intolerant...