Thinking Of Testing My 6 Year Old

[KPJIL]

Hi ... about three years ago my mom was finally diagnosed with celiacs disease after developing diabetes, thyroid condition, problems with her colon and bowels and the last straw breast cancer. As a result, as soon as i started showing signs I was tested right away and about 2 years ago had to start making a lifestyle change in how i ate ...been struggling with it for two years now otoo. We also suspect my grandmother was a celiac but passed away before being diagnosed.

I am concerned that my son and daughter may have it too. My son is 6 and has had health problems since he was little ...he takes allergy meds every morning and if we miss a dose his legs, ankles and feet become itchy and inflamed to the point that he goes crazy scratching, he has been tested for allergies but only positibe for seasonal allergies. He has a number of breathing issues but is not asthmatic. He is on two inhalers, one every day and one for chest pains when they develop. He does not get rid of cold very easily and is sick all the time it seems. I am going to a pediatrican next week to discuss have the blood test done to see if he has the gene but I am afraid I will be shot down due to his age. It took me about two years of complaining about symptoms until my mom was diagnosed and then they knew what to look for. I just feel I need to test him and my daughter down the road (she is 4).

Any thoughts or suggestions or similar experiences? It is frustrating to see your child taking so many medications at such a young age and feeling like no one really knows what he is experiencing.

[RiceGuy]

The standard blood tests are not all that reliable at any age, and from what I've read, at age 6 it is even more prone to false negatives. I think the gene tests can be accurate thought, but not the antibody tests. So it may be that you'd know if he has the gene, but not know if he's Celiac. However, some places, such as Enterolab, claim higher accuracy.

I'm sure others will chime in with more useful information.

[KPJIL]

Oh I am new to this ..so there is an anti-body test and a gene blood test ..thank you for telling me that so i can be specific in what i want to ask the Dr about ... does anyone know the likelihood that if you test positive for the gene then you will at some point in your life develop celiacs?

if you have the gene would it not be safer to change/alter your lifestyle before the signs and symptoms start occuring?

[Jestgar]

It isn't a gene for Celiac, it's just associated with Celiac. It's really not all that helpful in a diagnosis, although some people will argue that point.

Could you just change your son's diet to gluten-free? I know it's a bit more complicated with school lunches, but you could try extremely gluten light, and if you see a difference, go whole hog. Although, if you really want to ask for the Celiac panel, do it before you make a lifestyle change.

I guess I would say, try for the antibody panel, but assume you're cutting out gluten no matter what, at least for a while.

[sandejosgirl]

Heyyah! I have found the gene test important for Drs who don't think celiacs is a possibility for my kiddos. My 3 kids are all under the age of 5, and on a gluten-light diet before the anti-body testing which turned up low numbers. But, as they all have the genes associated with celiacs, are symptomatic, responded to the elimination of gluten and a gluten challenge (reintroduction of gluten after being off for a while brought back symptoms) my very traditional Doc said that we have enough clinical data to say that we are in the very least highly gluten sensative, if not celiac, and should go on a strict gluten-free diet. We will be having the biopsy done, but only because we are having other auto-immune issues (possible Crohn's) and they will be digging in there anyway.

If you do an anti-body test make sure that it covers:

total blood serum IgA

IgA anti-gliadin

IgG anti-gliadin

anti-tissue transglutaminase IgA

anit-edomysial IgA

Another thing, we got our gene testing done outside of our Docs office as they do not test for it in a celiac panel here. There is a local RN who runs a service for celiacs and will cheek swab and send it in for you. It was $395 and the lab billed our insurance directly.

I have had 2 different Docs tell me getting at least a gluten sensative diagnosis will be really helpful when it comes to diagnosing secondary auto-immune disorders/diseases and in their subsequent treatment.

Just going gluten-free as a trial is wonderful when it comes to quality of life, but if there are other health issues that need to be addressed it is helpful for the Docs to have something in their "language", i.e. a blood test/etc. and not "just" the reporting that it helped things. Oh, if you do eliminate gluten with or w/o other testing, I found it helpful to keep a diary/log of the before and after to show writen examples of our symptoms and how things changed.

Sincerely, Stephanie gluten sensitive and gluten-free for life 1/09

mother of Faith (4.5) Caleb (3) and Joy (1) all gene +, gluten sensitive, possibly Crohnies (Crohn's anti-body ++++)

[ang1e0251]

I would say when you see your dr and tell him your family history just like you have told us, he should have no problem running a celiac panel. It's a blood test and not invasive. Most dr's won't move a muscle without first running that test. There's a strong chance it will be negative because small children often test falsly negative. But that's OK. It should be a baseline for later. When you match up symptoms and family history there is strong evidence of the genetic influence from your family. If the dr doesn't conduct the genetic test, you can shop around for it, if you wish. Just don't back off if the tests are negative but your Mom Instinct says gluten intolerant. At that time it might be the time to try the elimination diet. Try to get your doc on board, but if not, go for it. You will know your kids are better or not.

Mom's know their kids!