Testing Our Tiny 3 Year Old
Posted 11 May 2014 - 06:37 PM
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!
Posted 11 May 2014 - 07:00 PM
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.
Posted 12 May 2014 - 01:49 AM
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.
Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.
Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.
Posted 12 May 2014 - 06:48 AM
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?
Posted 12 May 2014 - 06:57 AM
Posted 12 May 2014 - 07:00 AM
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....lood-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.
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Posted 12 May 2014 - 10:44 AM
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.
Posted 12 May 2014 - 11:20 AM
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.
Posted 12 May 2014 - 11:29 AM
Posted 07 June 2014 - 08:30 AM
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.
Jennifer, gluten free on and off since 2005, best I can remember sx started 2007, tTG of 4 1/13,
gallbladder out 2/13, scope 5/13 showing inconclusive damage to stomach and intestines,
tTG of 5 6/13, dx with non-Celiac Gluten Sensitivity or maybe pre-Celiac, gluten free since 6/13,
appointment soon for second opinion
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