Question for Mama's of Celiac Kids

Updated on December 15, 2010
H.G. asks from Oceanside, CA
7 answers

I have never been tested for celiac disease, but I eat gluten free because I get sick if I don't. I had my twin boys blood tested, and their results were negative. My problem is that they really aren't gaining weight, their poop is horribly smelly, they always have bags under their eyes, and I just don't think they're thriving. What I want to know is if anyone has kids that tested negative on a blood test, but ended up being celiacs with further testing. I am contemplating doing a fecal test. I know they are twins, which can have slower growth rates. I just think an almost 3 1/2 year old should weigh more than 29 lbs. They started out life eating gluten free because I was worried given my history (hadn't had them tested) They have been on a regular diet for over 2 years now, and were on a regular diet at the time of testing. Would a sensitivity/allergy cause slow growth? What I have is definitely more of an allergic response (achy joints, stuffy head, sinus pressure)

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D.G.

answers from Houston on

Yes you can have celiac even if blood tests are negative. The only definitive test is a biopsy showing intestinal damage. My nephew has celiac as dx'd via biopsy and if I remember correctly his blood tests were inconclusive.

Talk to their pediatrician before considering a gluten free trial, since you have to be eating gluten for accurate test results. (biopsy and blood test). You may want to consider thyroid testing since that can also cause failure to thrive. And check for anemia too. (anemia can be a symptom of celiac and can cause dark under-eye circles).

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B.B.

answers from Dallas on

Are your kids on a gluten free diet? If so, that can cause a false negative. My sister had to get a biopsy and serum test, to finally get diagnosed.

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D.F.

answers from New York on

You dont have to have celiacs disease to have a gluten sensitivity. You can test for gluten sensitivity through a stool sample. I bought a test at www.enterolab.com which showed I had severe gluten sensitivity. When I went on a GF diet, my health improved 100%. If you dont want to buy a test, try your children on a GF diet for a week or two and see if their symptoms improve.

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R.K.

answers from Boston on

They confirm a celiac's diagnosis by doing an intestine biopsy you can have a negative blood test and still have celiacs especially if you limit your gluten intake or go gluten free before testing.

edited: my 3.5 yr old weighs 30lbs but he has always been small. If your twins have always been small whats wrong w/ 29 lbs?

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T.C.

answers from Colorado Springs on

What was their diet like when they were tested? If they were already eating a gluten free diet, the test will not be accurate. From what I understand, it isn't always accurate anyway. I would just cut out wheat and gluten and see how they do. I've recently done this for my daughter and it has been like night and day for her. Poor thing, to have put up with this problem for years without me understanding that she needed this special diet. I refuse to get her tested now because it would mean that I would have to put her back on wheat/gluten to do so. No way, and no thanks.
Oh, and about the weight, all kids are different. My kids don't weigh very much. I think it might be because we don't eat much junk or fast food. They are thin and healthy. I think my 4 1/2 year old only weighs about 30-35 pounds.

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D.G.

answers from Chattanooga on

there can be many reasons for smelly feces..it also sounds like they need more sleep

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J.K.

answers from Phoenix on

My children and I all tested negative for Celiac's disease and tested negative for the blood work for the allergy but tested positive for being allergic to gluten when we did muscle testing. I had the biopsy of the colon that tested negative but I was allergic with muscle testing.

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