Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Testing Our Tiny 3 Year Old
0

10 posts in this topic

I have a 3 year old daughter. From very early, she was fussy, had a hard time eating and gaining weight and would just scream for hours. I was breastfeeding and tried going gluten free myself for a month, but gave up when she seemed fussy still. I thought she would outgrow the behavior issues, but even after she turned 3, she would spend hours a day screaming, and even when she wasn't screaming, she seemed agitated. We finally tried going gluten and dairy free (we tried various other methods and this far were told she was just small). After about 6-8 weeks, the tantrums were almost down to nothing. We thought it might have been a coincidence, so started feeding her gluten and dairy again, and the tantrums have been returning.

In addition to that, she is only 26lbs at over 3.5yrs. She was 15lbs at a year and it took her over a year to double her birth weight and over 3 years to triple. She also was found to be anemic. We gave her iron supplements for 2 months and retested and her anemia was worse, but not linked to iron deficiency (normocytic), she does not have blood in her stool and her stool is generally solid.

The plan is, we are taking he in for blood tests again to test for food allergies and celiac. She has never had issues with diarrhea or vomiting, I am going on a hunch, though,being that she seemed so much better while we were off gluten and dairy.

Does this sound like celiac? Is there anything I need to know before diving into more testing? Thank you!

0

Share this post


Link to post
Share on other sites


Ads by Google:

If she hasn't been on a fair amount of gluten, the tests won't be accurate.  If you suspect Celiac then a challenge would be what you would need to do which is putting her on gluten daily for up to 6 weeks before the testing is done.

 

As for food allergies, what you are describing has nothing to do with IgE food allergies which is what they test for.  Testing for food allergies in the absence of signs of an actual IgE food allergy is pointless because of the HIGH rate of false positives.

0

Share this post


Link to post
Share on other sites

Welcome to the forum! This sounds very much like my daughter, who wasn't small for her age but was extremely fussy since birth. She was finally diagnosed with celiac at age 4. While sticking to a strict gluten-free diet is inconvenient, it's a breeze compared to dealing with a child who's unhappy all the time! We had a very hard time finding a doctor who would take our concerns seriously and even order the blood tests, but once the blood tests came back positive they all changed their tune immediately, got her in for a biopsy within a week, and we had a firm diagnosis shortly thereafter. Everything improved dramatically very soon after.

If you click on my name to view my profile, there's a "find content" link that will take you to previous posts I made when we were going through the diagnostic process last year. Lots of people on this forum gave me great advice about which tests to request, etc. Others know more about the ins and outs of the various tests than I do, but the one thing I would recommend is to make sure they run the DGP-IgA and DGP-IgG tests as well as the tTG. My understanding is that the DGP rises sooner in response to gluten, and can also be more accurate in young children, so that might be the most useful test if she hasn't been eating gluten regularly and has to do a gluten challenge before testing.

Good luck! Whatever is going on, I hope you're able to get some answers soon. It's so hard to see a little one so uncomfortable.

0

Share this post


Link to post
Share on other sites

Stephanie, you bring up a good point. She has been off the gluten free diet for maybe 6-8 weeks, but we still are eating gluten free bread, pasta, and cereal at home. He just had had gluten containing foods when out. It isn't even every day.

As for the allergy tests, he wanted to do IgG tests. I would doubt she has any sort of immediate allergy, but I haven't thrown out the idea that it could be something else as she did have some bad days while gluten free that seemed to come out of nowhere. (And while we only drink almond milk and sometimes soy, she had some cow's milk the other day and said her mouth itched afterwards).

Green beanies, thank you! I'll have to look into what test he was going to run. Would this test be accurate if she has only had gluten at this lower level recently? And it is so hard. My husband feels so bad feeding her gluten when that could be causing distress, but I think it would be important to know if it is gluten and if it is, to what extent. But I do sort of want her back to how she was before. It's tough with her having so many screaming fits.

So, should we spend the next month feeding her lots of gluten and postponing the test until then?

0

Share this post


Link to post
Share on other sites

Let me add, she was only gluten free starting in January. I'm not sure when exactly we stopped, but I would guess she was off it for 3 months. Before that time, we had more of a gluten-heavy diet. Would that affect the testing? Doesn't it take a while of gluten-free eating for those levels to fall? I'm googling, but I found this: http://drrodneyford.com/faq/bloods-tests/gluten-blood-tests.html

0

Share this post


Link to post
Share on other sites




Let me add, she was only gluten free starting in January. I'm not sure when exactly we stopped, but I would guess she was off it for 3 months. Before that time, we had more of a gluten-heavy diet. Would that affect the testing? Doesn't it take a while of gluten-free eating for those levels to fall? I'm googling, but I found this: http://drrodneyford.com/faq/bloods-tests/gluten-blood-tests.html

You might want to check some reliable sources like the University of Chicago Celiac Center website. 3 months gluten free is long enough to affect the test results. Especially in a very young child who may not have made as many antibodies as an adult.

0

Share this post


Link to post
Share on other sites

Getting Celiac testing takes more exposure than "whatever we find out and about" from what people know. It's about deliberate gluten ingestion for a minimum of 4-6 weeks from whats been suggested by many Dr's.

 

As for testing, IgG isn't for allergies and isn't vetted by the medical community for any degree usefulness.  I wound't spend the time/money/kids blood for it personally.  A DETAILED food log would give you a much better idea of what could be causing an issue in a kids diet. 

0

Share this post


Link to post
Share on other sites

You guys have given me a lot to work with. I found a page on the u of chicago site saying they recommend 12 weeks of daily gluten (and now the 4-6 weeks posted above) so I am thinking we should hold off on any testing. I may consider genetic testing just to possibly rule out celiac, but if it's positive it doesn't seem like it is worthwhile (thoughts?) especially being that we don't have endless money for testing.

As far as the food log works, is celiac generally a slower reaction? I am not writing it down yet, but I am not noticing any clear patter, just an overall pattern when we were off gluten and dairy for about 3 months compared to being back on both. She had been screaming hours per day, then it dropped down to maybe 1 screaming fit a week after a month or two on the diet, then back to almost every day (sometimes many times a day) back on gluten and dairy. However, there isn't any pattern within hours of eating it that I have noticed.

Thanks again for the info, this helps a lot.

0

Share this post


Link to post
Share on other sites

Oh, I see you are referring to the IgG test. That was one our doctor suggested and he said it would detect "slower acting allergies". I was pushing for a celiac test myself based on the irritability and slow growth (and anemia) being that the irritability subsided when off gluten and dairy. If we rule out celiac, I would explore other things like a milk intolerance or something.

0

Share this post


Link to post
Share on other sites

I know it's a few weeks old, but check tonsils and adenoids for sleep apnea as well. My son, he's still tiny and with my dx everyone is getting screened, was 28# at almost 4 when he had his tonsils out. He shot up to 34# in 4 months because he could find sleep at night and was able to grow. He's 9 now and down to 56# after getting sick in December, sigh. His 7 yo sister weighs more than he does and is barely shorter.

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
      103,641
    • Total Posts
      918,437
  • Topics

  • Posts

    • Anxiously waiting
      Thanks heaps. I will def be going private if the wait is too long. I have done a little research but i thought a gluten intolerance and coeliac was the same lol. My iron levels are just below average apparently but she said not bad enough for me to be this tired.
    • Celiac.com: Traveling While Gluten-Free? What To Consider From Someone with Celiac Disease
      There are a few definite truths about living gluten-free: You miss bagels every day. Curious friends regularly badger you with questions like “is ... View the full article
    • How effective is HD skin biopsy after being gluten free for a year
      DH is celiac disease that appears on the skin (gluten triggered).  It does not appear when you are consuming dairy, which sounds like a separate issue for you.   A DH biopsy requires active lesions (new/fresh) from consuming gluten.  So, if you want to be tested via a skin biopsy you must go back on gluten.  Finding a dermatologist who knows exactly how to biopsy for DH is often difficult.  Be sure your Derm is knowledable and has biopsied for DH before. Why no endoscopy for now?  I bet your GI  knows that your insurance will deny the endoscopy.  After all, you tested negative to the blood panel.  Your GI should not even ordered the blood panel knowing that you had been gluten free for months.  You have to be consuming gluten daily for 8 to 12 weeks for the blood test to be accurate.   Did you ever test positive?  Why did your primary diagnose you?  Having the gene just means you can develop celiac disease.  Some 30% of the population carries the genes.  The gene test should only be used to help rule out celiac disease.  
    • How effective is HD skin biopsy after being gluten free for a year
      No one can say exactly how long you might be able to get a positive dh biopsy after having been gluten free as long as you have been. The Chicago Celiac Disease Center says this: http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/ http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ You said you had a flare of the plaque psoriasis -- that is NOT dh so why do you think the dh biopsy will show positive? Testing positive for the celiac genes does not mean you have celiac disease. 30+% of the population have the celiac genes but only very, very small fraction of those people do or will present with celiac disease. The gene tests are only used to rule OUT celiac NOT to diagnose it. Frankly, I can understand why your GI does not put any stock in your Primary doc's thinking you have celiac disease. A positive celiac gene and the boils in your armpits which the GI never saw and were never biopsied for dh but they resolved on a gluten free diet and so did your plaque psoriasis. That's all the GI has to go on. I don't know why you are pushing an endoscopy. If you've been eating strictly gluten free then an endoscopic biopsy for celiac will be negative.  Your PCP should have done a celiac blood panel on you back when you were still eating gluten rather than dx you based on the celiac gene you tested positive for.
    • How effective is HD skin biopsy after being gluten free for a year
      I've been gluten free for a year now and my gastro wants to wait for the endocopy until I'm eligible for the colonoscopy when I turn 50 later this year. I don't think she believes I have celiac, even though I tested positive for one of the genes associated with celiac and my primary has diagnosed me as having celiac. The gluten sensitivity blood tests came back negative, of course, since I was gluten free for 9 months at that time. Why is she waiting? At any rate, My digestive system has improved greatly, but when I reintroduced non fat Greek yogurt in my diet, the plaques psoriasis returned on my elbows. My primary believes it is dermatitis herpetiformis (as well as I, since before going gluten free, I used to get boils in my armpits) and I'm scheduled for a skin biopsy in 3 weeks. However, I eliminated dairy from my diet 4 weeks ago and the plaques psoriasis is healing like it did when I eliminated gluten from my diet a year ago. If the scar is reduced to eczema, does that mean there still are IGA deposits in my skin? I don't want to resume dairy since I experienced a cross reaction to the casein in cheese and found lactose was on that same list. So my question is, how long do the granular IGA deposits remain in the skin in order to have a valid skin biopsy test performed for dermatitis herpetiformis? Since it takes 1-2 years for dermatitis herpetiformis to heal on a gluten free diet and I just had a recent flare up, can I continue on my dairy free diet or should I resume eating non fat Greek yogurt for the next 3 weeks just for this skin biopsy?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,732
    • Most Online
      1,763

    Newest Member
    SueJ
    Joined