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? On If My Daughter Might Have Celiac Or Gluten Intolerance

Mommymurray2

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Mommymurray2 Newbie
Mommymurray2
Posted

My name is Jen, I have 3 children, 2 boys and a girl. they are 7 (boy) 5 1/2 (girl) and 4 (boy).

My girl Ari has been diagnosed last year on the Autism Spectrum, ADHD and a possible mood disorder...

I have 8 neices and 1 nephew. Out of them 6 of my neices are gluten free, and one is gluten free/casien free/ soy free (she is also on the spectrum and has ADHD) and my nephew is dairy free

my daughter is 5 1/2 and weighs 29 or 30 pounds, she is between negitave percentiles and 10% for her height and weight. My husband and I were concerned about her lack of growth so we went to our dr. He ordered blood tests (testing for sugar, thyroid, and the celiac sprue test) also did x-rays on her wrists to see about if she had dwarfism.

Her symptoms are she is constipated and has been since birth, she wouldnt breast feed (due to her sensory problems of being close) and was allergic to normal formula had to give her soy formula. she eats all the time! She avoids things with gluten or milk. She never finishes cereal or pancakes usually, usually takes apart her sandwiches and just eats the insides. She also is very skinny. It seems that i am the only one concerned with her growth...everyone else says that shes just petite!

Not sure if i should get another round of tests done but the ones she had before all came back normal but i never got actuall results.

Im not really sure what tests i should ask for or what not...Thanks for any help you can offer

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pain*in*my*gut Apprentice
pain*in*my*gut
Posted

My name is Jen, I have 3 children, 2 boys and a girl. they are 7 (boy) 5 1/2 (girl) and 4 (boy).

My girl Ari has been diagnosed last year on the Autism Spectrum, ADHD and a possible mood disorder...

I have 8 neices and 1 nephew. Out of them 6 of my neices are gluten free, and one is gluten free/casien free/ soy free (she is also on the spectrum and has ADHD) and my nephew is dairy free

my daughter is 5 1/2 and weighs 29 or 30 pounds, she is between negitave percentiles and 10% for her height and weight. My husband and I were concerned about her lack of growth so we went to our dr. He ordered blood tests (testing for sugar, thyroid, and the celiac sprue test) also did x-rays on her wrists to see about if she had dwarfism.

Her symptoms are she is constipated and has been since birth, she wouldnt breast feed (due to her sensory problems of being close) and was allergic to normal formula had to give her soy formula. she eats all the time! She avoids things with gluten or milk. She never finishes cereal or pancakes usually, usually takes apart her sandwiches and just eats the insides. She also is very skinny. It seems that i am the only one concerned with her growth...everyone else says that shes just petite!

Not sure if i should get another round of tests done but the ones she had before all came back normal but i never got actuall results.

Im not really sure what tests i should ask for or what not...Thanks for any help you can offer

Hi Jen (I'm Jen, too)! :) It sure does sound like Celiac, doesn't it? Are her cousins gluten free due to confirmed Celiac? That would increase the odds of your daughter having it right there! How long ago were the labs run? And yes, get a copy and see exactly what tests her Celiac Panel consisted of. The older anti-gliadin ABS are not as accurate in children as the newer DGP (deamidated gliadin peptide) antibody screen. Especially if she was on a low gluten diet (as you said she avoids things with gluten). Definately worth a second look, IMHO....maybe a gluten challenge (cringe)and repeat Celiac screen with at least:

1)tTG (tissue transglutaminase)antibodies IgA and IgG

2)DGP (Deamidated gliadin peptides) antibodies IgA and IgG

Some labs still run the older antibody tests which are the Antigliadin antibodies, but they are not as specific for Celiac disease. Also, if they just did any of the above testing with the IgA class of antibodies, then a total IgA should have been done to make sure she isn't deficient in IgA antibodies, because that would cause a false negative result.

Have you ever tried her on a strict gluten free diet? Might be something to consider and see what happens. Keep in mind if she does go gluten free and you want "official" testing down the road, she will have to eat gluten again. :(

Good luck and don't give up! Your mommy gut is telling you that something is not right, so keep looking for answers!

Genna'smom Apprentice
Genna'smom
Posted

Hi Jen

I too have a 5 year old who we found out by accident she is a celiac at 2 1/2 yrs old. She is still small but at least she is now growing thanks to being gluten free. The way we found out was that she stopped eating and drinking and was hospitalize due to failure to thrive. They ended up doing biopcies of her esopgaus and intestines as she had had gerd bad and they thought she might have burned her throat. Needless to say she had lost weight and was down to 13 lbs. She ended up with a feeding tube for 1/5 years before she started eating again. She is now doing so much better but she still only weighs 31 lbs and she is growing taller so that makes me feel better. You can tell she when she get gluttened - she acts outs and ends up with stomach pains and in the bathroom. She too was constipated from young and did not breast feed. Hope this helps and follow your gut. The endoscopy and biopcy is the real true tests. All of her blood tests showed negative. Like others said try it and see how well she does..

T.H. Community Regular
T.H.
Posted

Not sure if i should get another round of tests done but the ones she had before all came back normal but i never got actuall results.

Im not really sure what tests i should ask for or what not...Thanks for any help you can offer

I would definitely get the test results, yes - lots of folks here are good at looking at the results and giving you info. to take back to the doc. That sais - a strict (even no gluten contamination) gluten-free diet is something a number of people here do even if their test is negative, as gluten intolerance is something that there IS no test for (a recent study finally confirmed that people are having reactions to gluten that are definitely not celiac disease). Nothing aside from avoiding it and seeing how the body reacts work to diagnose something like that. Very frustrating, and also seldom mentioned by doctors.

There are 4 members of my family who are diagnosed celiacs, but my son's blood panel was negative. We took him off of gluten anyway, and he's had a lot of issues improve, including a bloated stomach, gas, and major emotional issues that were significantly better.

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