Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thinking Of Testing My 6 Year Old


KPJIL

Recommended Posts

KPJIL Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

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 Newbie

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 Rising Star

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 Newbie

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 Contributor

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!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,887
    • Most Online (within 30 mins)
      7,748

    BradL
    Newest Member
    BradL
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, I hope you know that celiac disease is not an allergy to gluten. It is an autoimmune disease reaction that is triggered by gluten consumption. Allergies don't trigger immunes responses whereby the body attacks it's own tissues but this is what is actually happening with celiac disease and what distinguishes celiac disease from NCGS (Non Celiac Gluten Sensitivity).  Second, though I think your question other question has already been answered. Since the tTG-IGA antibody test is only 90 to 98% specific, elevated values for this test will be have non-celiac disease causes in 2 to 8 out of 100 cases. I realize that is addressing your question in a general way but the non-celiac causes have also be covered in this thread, though not to  the granularity of giving percentages to each non-celiac cause. Not sure why that is important to you at this point. First, you need to separate whether it is due to celiac disease or not. If not, then start sorting out what the other cause is. But as I stated above, by far the most likely cause is celiac disease so that is the place to start. Sure, we get it. Having  to eliminate gluten from your life spells huge culinary and social changes and challenges. But it's still better than facing cancer or host of other diseases that less definitive antidotes and outcomes. With celiac disease you don't even have to worry about taking medications because, as of now at least, there are none. The treatment is very straightforward. Avoid gluten.
    • Shining My Light
      @trents This info is so helpful and I’m absorbing it all. My blood tests were almost a month ago and I feel like it came out of left field. I never even heard of term “silent celiac.” I thought celiac gave you violent diarrhea when you consumed a tiny bit of gluten. That’s it. Not that it damages your small intestine, not that it made the absorption of vitamins and minerals compromised. None of it. To me it was just an allergy to gluten.  My close family and friends think I’m crazy for even giving it a second thought because “no symptoms, no worries.”  It’s unfortunately hard for me to let something go that I don’t know enough about. Therefore all the research came into play.  I’m glad I’ve joined this forum. It’s more helpful to talk things through with people than looking through cases studies without being able to ask questions. I’m on the fence right now on what my odds are. I don’t know enough about the other variables and probability of why a TTG level would be raised.  The questions I still have lingering are:  -what are the odds that these levels are raised in something other than celiac? For instance of all positive TTG tests that have been done how many of those are from celiac? I know it’s a big ask but to me that’s something that is super unclear to me.  - what are the TTG levels in something other than celiac? (I.e. in things like type 1 diabetes, rheumatoid arthritis, hepatitis, viruses, NCGS, etc, are the TTG levels the same as those that have celiac, higher or lower?)  - even if it’s not celiac and it’s NCGS, if my body is “responding” to gluten, and creating antibodies to it, wouldn’t that be something to avoid anyway? Maybe not doing the damage but still my body doesn’t like it?  -could I really possibly follow a gluten free life as close as I follow Jesus?  Definitely understand now that key piece of needing an EGD. It’s looking at things from another angle. Also with all the other associated blood work, more angles.  I would like to say please forgive me if any of my questions seem as though I’m trying to be difficult. Making lifelong decisions is hard.  I do have decisions to make as you have said. I clearly will need convinced in order for this to be something to be committed to.  I would hope that there will be something in the future that comes out that will offset gluten in bodies the same was it does for sugar in diabetics.  My compassion is far greater for anyone carrying the burden of celiac than it was a month ago knowing what I know now.  I appreciate you helping me work this out, in real time. It’s been lonely up to this point. Only me talking about what I’ve read to people who don’t think I should be bothering with it any further. 😆 So thank you! 🙏            
    • trents
      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
    • trents
      A classic case of more than one medical problem going on at a time. We often forget that can happen. Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?
×
×
  • Create New...