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Any Almost Symptomless Young Kids Test Positive?


Metoo

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Metoo Enthusiast

I did not test positive for celiac, but i have a rash and it's obvious I can't have gluten.

In the year I have been gluten-free my family has been 80% or more gluten free. I still buy them some non-gluten-free packaged snacks or an occasional loaf of bread.

During this time my 5 year old managed to gain 7lbs between 4-5 years old! This is a kid who barely gains 2-3lbs a year, it finally pushed him up to a more matching percentile! (75th height/50th for weight!). He also has excema, his skin feels like sandpaper!

I would like to get him tested I think. But I don't have a positive test to back me up. And he doesn't have a lot of symptoms.


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1974girl Enthusiast

I have a totally symptomless child but her dad is type 1 diabetic and she has low thyroid. It was those facts alone that led her pediatrician to run a random test. Positive. Oh and egg allergy can also cause exema.

Skysmom03 Newbie

Mine was symptomless as well. His dad has type 1 diabetes and celiac. Only got tested because of him.... Turns out he has had it for about three years they believe.

Minette Contributor

I think my daughter's doctor would consider the change in weight gain to be significant enough (especially combined with your positive response to going gluten-free) that he would be willing to test.

Then again, we are lucky enough to have great insurance that lets us do pretty much anything, so we rarely have to work hard to convince doctors to run tests. Sadly, that usually factors into the equation.

Mom-of-Two Contributor

My daughter tested positive to our shock after we had them both tested following my own disgnosis 8 mos ago. No abdominal symptoms or indications of anything wrong, very healthy. She had a normal biopsy, however tested pos on her ttg labs and pos for the endomysial antibody, also vitamin D deficient. She has been strictly gluten free for 3 months, and gained 4 lbs in the 3 months- very telling.

1desperateladysaved Proficient

Eczema isn't normal. I had it when I was a teen. The itching is horrendous, if you can spare him only that, I think it would be worth it.

Diana

Cara in Boston Enthusiast

My son's only symptom was a drastic and sudden behavior change. Otherwise he appeared perfectly healthy. Taller than average, fantastic eater, zero GI issues (ever, even as a baby). Mysterious things that improved (besides his behavior) after going gluten free: sleeps better, no dark circles under his eyes, more verbal and outgoing, more patience. His hair got thicker and turned somewhat curly. (not sure if that would have happened anyway - it is weird.)

Now, if he gets gluten accidently, he has symptoms. Stomach ache, rash around his mouth. super-grouchy mood for about a week.


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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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