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Testing Babies
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My daughter (9 months old) has a family history of celiac and food allergies. I'm breastfeeding, so we're both currently dairy-free (otherwise she gets eczema) and mostly gluten-free (she doesn't react to traces in my diet, and there aren't any traces in her diet). We started eliminating wheat and oats when she was 5.5 months old (which cleared up the slimy green poop that I think was allergic colitis, and a persistent anal fissure).

She's otherwise healthy - a skinny little monkey (bounces btwn 3rd and 25th percentile weight for height, but she's always been 95th percentile or higher for height), but cheerful and generally well-looking.

Her pediatrician wanted to do bloodwork for celiac at her 6 month well baby visit, but at that point we'd just gotten the green poop and bloody diapers cleared up, and I didn't want to reintroduce gluten at the same time we were introducing solids.

The current plan is to try barley, and see if she tolerates me eating it. If she does, we'll try her eating it. If that goes well, we'll keep it up for 6 weeks, then do the bloodwork on both of us. If she doesn't tolerate the barley, then we'll stay gluten-free for awhile longer and reassess.

How much barley does she need to eat to get accurate test results?

Is there any point in testing her now, rather than doing dietary challenges periodically and then testing after age 2, to rule out transient gluten intolerance?

Anyone have any tasty recipes for making barley palatable for a baby? She can gum up pretty much anything that isn't a choking hazard, but prefers finger foods.

Thanks!

Phoebe :)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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