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Pos Celiac In 1Yr Old..curious Other Test And Breastfeeding ?

mmcc54

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mmcc54 Contributor
mmcc54
Posted

hi So alittle history my daughter starting falling off the charts at about 6 months and at a year is the same size she was 6 months ago, barely doubling her birth weight...her IgG came back high at 16 (anything over 9 pos) and her IGA was neg at 1.2 (anything under 4 neg) The rest of her blood work also showed she was anemic, low iron, he rliver enzymes were high, alkalin phosphates were low showing pos malnutrition, and high blood platlets! Her stool samples showed she has a malabsorbtion issue as well...originally her pedi said don't switch to gluten free yet (that was a week ago) since the specialist may want to run more test. He called back last night after reviewing the rest of her results and said to switch to gluten free ASAP (me too since im breastfeeding) and he was going to call the specialist first thing this am to get her in asap...does this sound like celiacs? Im confused since her IgG was pos but IGA was neg? also what other further tests would they do on a baby? Im also concerned about all the high and low flags in her blood wor,k her pedi seemed to think it was all do to her digestive issues..also if you nursed did you go gluten free as well?? Any insight, tips, stories, input on her test results would be very much appreciated...as you can imagine im freaking out a bit :/

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wmramsel Explorer
wmramsel
Posted

I'm new at this as well, so I don't have much insight.  But I have found that the testing is pretty unreliable in children/babies.  That could explain the ups and downs.  If I remember correctly, IGG is more accurate than IgA, and IgA is notoriously unreliable in kids.  Did they talk about an scope and biopsy?  

 

Anyway, just wanted to say hang in there!  There is a lot of good information on this site, and lots of experienced people who have helped me out tremendously!

Cara in Boston Enthusiast
Cara in Boston
Posted

It definitely sounds like celiac.  The symptoms and the IgG test.  But, I would really hesitate to change her diet until you see the specialist.  Once you make the change, there is no way to do any more tests without going BACK to eating gluten and sometimes it is much harder after being gluten free.  The symptoms can be worse.  It took us almost 4 months to complete the testing for diagnosis with my (then) 5 year old.  During that time, I also tested positive and changed my diet right away.  I was only gluten free for a few weeks, but all my subsequent tests came back negative so I was unable to get a clear diagnosis.  It is clear to me - all my pesky symptoms - that I attributed to getting old - went away and I felt great.  Anyway, you really want to be sure with a child so young, so I wouldn't do anything to jeopardize the tests that I'm sure a Pediatric GI will want to run.

 

It is very hard to continue to feed your child something you know is harming them, but hang in there.  While you are waiting, start trying some new gluten free products so that when the time comes, it won't be a drastic change.

 

My son was only positive on his IgG tests.  All the others were negative.  The testing is tricky, which is why they give so many.  You only need one positive.

 

Since you already have a positive test result, get everyone else in the family tested .  . . there could be more which will make the diet change even easier if you all do it together.

 

Cara

greenbeanie Enthusiast
greenbeanie
Posted

I would also hesitate to change her diet until you've heard directly from the GI doctor or nurse that you should do so. We've just been through this with my four-year-old daughter. All three tests they ran were clear positives, and her PCP said to stop gluten right away. He was well-intentioned, but that was bad advice. Fortunately, I 'd done my homework and knew that stopping gluten before ALL testing is complete can invalidate the results. I called the GI's office the same day we got the blood test results, and of course they couldn't actually get us in for an appointment that day. However, I asked specifically whether I should keep feeding her wheat until we actually met with the doctor and did the endoscopy, and I was told to definitely keep feeding it to her. They were able to get us in for an urgent-care appointment within days, and the endoscopy is tomorrow. While it's been hard to keep feeding my daughter food that I'm almost certain makes her sick, even for a few days, it will be worth it to have absolutely clear results now so that we never question the diagnosis later.

Since your daughter is so young, one positive test really does sound like it's probably celiac. But I'd still urge you to call the pediatric GI's office directly and ask whether you should go gluten-free yet. They really should be able to answer that question for you over the phone. You really, really won't want to have to put her back on gluten to finish the testing later, once you've gone gluten-free even for a little while.

Good luck! If celiac is confirmed, it's very good that you've caught it so soon and can avoid more problems later.

StephanieL Enthusiast
StephanieL
Posted

DO NOT go gluten-free until you see the GI.  It is so hard to go back on when you need to for testing.

mmcc54 Contributor
mmcc54
Posted
  • Author

She cant be seen until July 3rd just got the call!! I cant seem to find any other pedi gastro in my area :( her pediatrician said he wanted her to be seen right away and then Albany med calls me with this date??!? 3 WEEKS away! ehhhh

pricklypear1971 Community Regular
pricklypear1971
Posted

She cant be seen until July 3rd just got the call!! I cant seem to find any other pedi gastro in my area :( her pediatrician said he wanted her to be seen right away and then Albany med calls me with this date??!? 3 WEEKS away! ehhhh

Call your pediatrician and see if s/he can help.

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