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Testing Our Tiny 3 Year Old
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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!

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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.

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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.

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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?

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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

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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.

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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. 

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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.

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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.

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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.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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