• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Are My Kids Too Young To Be Tested?
0

10 posts in this topic

Hi All. I was diagnosed with Celiac last week. In an effort to determine if my children also have Celiac I asked our pediatrician to order blood work for all 4 of them. I have an 8yo, 4yo, 2yo, and 7 month old. He explained that the tests for the 8yo and 4yo should be "pretty accurate", that the 2yo's tests will most likely be inconclusive and that the baby is too young to test.

My question is this: how is there even a board for parents of babies with Celiac if a baby is too young to be tested?! I am new to all this, so I am confused. Can someone fill me in on what I need to know?

Also, I'm not 100% sure I am confident in my diagnosis based on blood work alone. I took myself off gluten for a few weeks before the blood tests, then ate a small amount the day before my blood draw and two days before (and was VERY sick for almost a week). I'd love help interpreting if someone would be so kind.

Thanks so much!

Deamidated Gliadin Abs, IgA 2 Range 0-19

Deamidated Gliadin Abs, IgG 3, Range 0-19

Endomysial Antibody IgA Negative

Immunoglobulin A, Qn, Serum 118 Range 70-400

t-Transglut tTG IgA <2 Range 0-3

t-Transglu tTG IgG 8 Range 0-5

WBC 3.9 Range 4.0-10.5

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


All I can speak to is your 2 year old. My daughter was tested when she was 27 mos old and her EMA came positive. We decided to retest 6 weeks later and this time both her EMA and ttgigg were positive. She's having her endoscopy done tomorrow morning (am very nervous).

Was your GI willing to diagnose you as celiac based only on your blood test? I took my daughter to 3 GIs and all of them said they wouldn't be willing to formally diagnose her without an endoscopy. :(

0

Share this post


Link to post
Share on other sites

I have hear the "2 and younger" thing too and I am not sure how accurate that is. My DS was tested/dx at 3. We did test DD who was a tiny baby at the time (I think around 7-8 months if I remember correctly) and as guessed she was neg. but I wanted to be sure since I knew we would be going gluten-free for all the kids in the house and figure it was better to test her early over not at all since we would have them gluten-free.

I am trying to decide if we should try wheat with her now (she's 3) and if I should test the baby before he weans (he's only 10 months old so it'll be a while yet but he most likely won't get gluten except what he may be getting via breastmilk) after he weans for a while either.

If you don't think it'll be a giant hassle, I would test everyone or at the least the oldest three but that's just me :)

0

Share this post


Link to post
Share on other sites

Blood tests just aren't reliable in those under 2. They don't have the same immune system you do (and won't until they are closer to 7, at least, so it's not the testing magically is reliable, but there's a better chance than when they were younger).

But that doesn't mean that they can't be tried, you just need to keep in mind that a negative may not *actually* mean a negative. (Though false negative rates can by high even in adults.) Kids are still diagnosed through elimination diet, biopsies, blood tests, genetic tests, and really instinctive docs who listen to their patients. :)

Your blood work isn't really useful to interpret, imho - you were gluten free for a few weeks before hand, so it wasn't a "fair test". (No one knows how long it takes for any one person to have their test results changed significantly by a gluten-free diet, we can't predict that ahead of time. Had you tested before you were gluten free, your results may well have been quite different, but no one can say.)

0

Share this post


Link to post
Share on other sites

My 21 month old had the blood tests done after her 18 month appointment and is having an endoscopy tomorrow morning 8/9/12. The gastroenterologist explained that the mixed results on her bloodwork - the more "general antibody markers" in layperson's terms were positive but the more specific antibody markers were negative - could be due to her young age. But because she did have 3 positive markers and she is barely 21 pounds and 31 inches tall, she recommended the endoscopy.

0

Share this post


Link to post
Share on other sites
Ads by Google:


My question is what is wrong with drawing blood and doing a genetic test? Why are docs SO adamant about doing a biopsy? Why go the invasive route? From my research, a genetic test is 100% accurate. And happened to be the only way I got a positive test. Biopsy was inconclusive, and TWO regular blood tests that were false negatives.

I have a 9 month old that I want to get tested. I can't stand not knowing for sure!

0

Share this post


Link to post
Share on other sites

Why go the invasive route? From my research, a genetic test is 100% accurate.

Just because you have the genetics does not mean you have Celiac. It means you are predisposed to getting it, not that you ACTIVELY HAVE it. It's just like cancer genetic tests, you may have the genetics for breast cancer but it doesn't mean you have it at this moment.

Blood work and biopsy are the only ways to tell if you actually HAVE Celiac (and more Dr. are going with the 5 criteria of blood word, symptom resolution on the gluten-free diet, genetics and a few other over biopsy because the blood work is getting advanced enough to be conclusive.)

0

Share this post


Link to post
Share on other sites

Just because you have the genetics does not mean you have Celiac. It means you are predisposed to getting it, not that you ACTIVELY HAVE it. It's just like cancer genetic tests, you may have the genetics for breast cancer but it doesn't mean you have it at this moment.

Blood work and biopsy are the only ways to tell if you actually HAVE Celiac (and more Dr. are going with the 5 criteria of blood word, symptom resolution on the gluten-free diet, genetics and a few other over biopsy because the blood work is getting advanced enough to be conclusive.)

So there's nothing in the genetic test that waves a red flag saying "HEY you have Celiac!"? I have been completely mislead then. Wow...so why wasn't I told this? I honestly haven't ever read it either. OMG. I'm sort of shocked right now.

0

Share this post


Link to post
Share on other sites

So there's nothing in the genetic test that waves a red flag saying "HEY you have Celiac!"? I have been completely mislead then. Wow...so why wasn't I told this? I honestly haven't ever read it either. OMG. I'm sort of shocked right now.

No, nothing about the genetic test says you have Celiac just the predisposition to it. That is why it isn't considered diagnostic and often times insurance doesn't cover the testing.

0

Share this post


Link to post
Share on other sites

My understanding of the genetic test is the same as StephanieL's; a positive genetic test means you have a predisposition to develop Celiac (or another of a handful of autoimmune diseases including diabetes and Hashimoto's).

My older son was essentially diagnosed at 27 months, and without a biopsy. He had been growing extremely slowly since 6 months, and then became extremely ill around his 2nd birthday (bloating, massive diarrhea, fevers, lethargy, etc) and at 27 months he was 30" and down 20 lbs. All blood tests came back overwhelmingly positive for Celiac. The pediatric GI we saw gave us the option to biopsy or not. He said he could be 99% certain our son had Celiac without the endoscopy, so we skipped it. Because he was so ill and frail we couldn't get comfortable with doing the procedure to get the extra 1% certainty.

Now, nearly a year later, we just had a followup visit with the GI. He said in recent months things are shifting further away from needing the endoscopy for an "official" diagnosis when there is a strong positive blood test. Despite not having the endoscopy, he has given our son a diagnosis of Celiac disease, given his initial strong test results, symptoms presenting at time of crisis, and response to a gluten free diet. 10 months after removing gluten from his diet (and our household) our son is 28.5" and 34.5". Still really small compared to his classmates, but he's healthy and growing. And his IgA TTG is only baaarely above normal.

Our younger son was only 8 months old when things got scary for his brother. The GI recommended that both the baby, my husband and I had bloodwork done. It showed that my husband and younger son tested positive for the gene pairing, but negative for celiac. At 12 months the baby's growth slowed way down, and at 15 months he started having GI symptoms (as well as extreme fussiness). He was only eating a small amount of gluten each day (shared snack at daycare). We did another bloodtest which still came back negative, but we removed all gluten anyway. By 18 months his symptoms went away and his growth has picked back up. The GI can't give him a positive diagnosis, but we all agree he should remain gluten free. We can revisit doing a gluten challenge when he's older if we feel we need things to be official...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,749
    • Total Posts
      932,173
  • Member Statistics

    • Total Members
      64,206
    • Most Online
      3,093

    Newest Member
    Nati
    Joined
  • Popular Now

  • Topics

  • Posts

    • King Arthur Flour has excellent mixes and gluten free recipes if you enjoy baking.  If you live in a city, there are bound to be bakeries and cafes that make gluten free items and some groceries stores that stock them as well.  
    • You could have the full celiac panel done to see if any other numbers come up high. TTG IGA and IGG, DGP IGA and IGG, EMA. If your doctor is not a gastroenterologist then you can try going to one. They know what to test for. You could also simplify your diet and start a food log. Gradually introduce foods and when stomach pains start you can see what you ate in the last two days to cause a problem.  
    • I had the same issue with stomach pain after diagnosis and it turned out to be soy protein that was causing it.  I never ate much soy before diagnosis and gluten was keeping me constantly ill so I never realized it was an issue till I stopped going with foods with soy on the suggestion of good freind. Not saying that is the problem with you but thought I would throw it out there as a possibility. If you are eating oats you may want to drop those for a bit also since some of us will react to those even if they are gluten free. In addition is there any way you can avoid eating oput for a month or so? You may be getting glutened but not enough to show on the TtG. I could be wrong but I think the DGP tests are the preferred ones for checking with dietary compliance. You should also consider dropping dairy for a bit. Add it back in when you are feeling better starting with stuff like hard cheeses, yogurt and butter that have low amounts of lactose. Hopefully you will be able to figure out what is going on soon and get some relief.  
    • I was diagnosed with celiac 2 years ago and since have been gluten-free. When I started my ttg was 88. I just recently visited the doc because I still seem to suffer from almost daily stomach pain. My ttg came back at 4. The doc suggested I try Metamucil and next week give lactaid a try as I still eat dairy.  The metamucil I took one day and I had such bad stomach pain and loose bowel movements I felt too miserable to try it again. I haven't tried the lactaid yet but in the past I have and didn't see much difference.  Heres the other thing: I do eat out a lot. I try to stick with safe places but every now and then I play the odds. So I usually manage to get sick once a month (lately it's been more) so I went to the doc and had my ttg level tested to see if my body is still getting gluten and this is why I still feel horrible. But my levels came back at 4, so now I'm just wondering... what the heck? I'm feeling super discouraged and doomed to a life of unexplained stomach pain.    The annoying part is all my dr did is give me the results. Like "oh you're continuing to improve." Ok, but I'm in paid so what's going on? No answers, ever. It seems like I get suggestions, but they never do anything and I'm so fed up with my body. I'm tired of waking up frequently wondering what I could have ate that is bothering me. I had no idea two years later I'd still be struggling. Lately the stomach pain has increased and it's daily now again. I've been taking pepto for it and it helps a bit, but I don't want to live life digging in my purse for pepto everyday.   any advice or suggestions from anyone who has been through this are appreciated.  I get that celiac may not be the only problem but I don't know where to go anymore as I've been searching for 2 years.      
    • I agree that this article is a scare tactic.  Looks like this child was starved to death. Note the article states the parents did not seek medical help. Millions of children and adults have food allergies and intolerance but do not have this happen. Following a medical diet is a healthy choice for quality and quantity of life. These types of articles have no value in this place of healing.
  • Upcoming Events