What Is The Most Accurate Testing In Kids?

[breann6]

My son needs to be tested for Celiac. I tested + a few months back. Which is the most reliable, accurate and painless way to go about it for toddlers. I am not going the biopsy route with him. He has already had an endoscopy when he was one year old, not checking for celiac though.

he has some symptoms. mostly though they are sporadic. he has diareah, floating stools and pale- tan stools more often pale than not. He is on the thin side and the lower percentile of weight,- but my husband and I are both slim as well, especially me. He had moderate/severe GERD as a infant and up until 2 years old. He is still in therapy from the food aversion he aqquired during that period. according to three different OT/PT he has sensory integration disorder also. his reflux took a horrific turn around the time we introduced cereal which now has my suspicions raised to celiac possibly being the reason. he was always crying and screaming after feeds then finally refusing to eat and loosing weight until pumping him full of meds and withdrawing foods and going back to strictly nursing until close to a year- then reintroducing yogurts and fruits, veggies but no cereals.

the ped suggested a stool test to begin with- but thought there was NO stool test for celiac other than the enterolab one- is this just an indicator test to point to celiac, but not diagnostic?

thanks in advance

~breann

[wonkabar]

"Traditional" testing for toddlers is very often inaccurate. My son's labs were negative, and we also chose not to put him through the biopsy. We weren't willing to put him under anesthesia if we could simply remove gluten from his diet to see if if helped him. He was 3 at the time and is now 3 1/2. His growth was always above average BUT he was always highly symptomatic of celiac disease. His poops were absolutely disgusting...very pale, always the consistency of applesauce and had a horrible odor. He easily had 4 BM's like this a day which also resulted in a bleeding, blistering diaper rash. He would wake up in the middle of the night 3-4 times a week crying and screaming for no apparent reason. He'd also start to scream/cry during the day for no apparent reason. When he was about 2 1/2, we took him to a pediatric GI who told us his gi issues had nothing to do with food and a change in behavior is "purely coincidental". He felt we were probably giving him too much fiber (whole grains) and that was probably making him gassy/crampy and giving him dirreah. HELLOOOOOOOOOOOOOOOOOO!!! Whole grains???!!! Ugh!

Fast forward...we were watching MSNBC one night and heard about celiac disease on Keith Olberman's show. (Zachary was nearly 3 y/o.) Keith Olberman is a Celiac. Having never heard of it, we googled celiac disease. We were at a loss for words when we read about it...IT WAS ZACHARY!! We had his labwork done the first week of March and removed him from gluten the very next day. The results of removing gluten from his diet were truly amazing. Every God-awful symptom (physically and behaviorally) disappeared almost immediately. Within 48 hours his poops were becoming formed and he also stopped screaming/crying.

Zachary was a preemie and we've always wondered if that type of stress on his body triggered the auto-immune response. He also has a mild speech delay and sensory modulation dysfunction; both of which are the result of a gestational age of 32 weeks at birth! He's doing great! We had him tested through Enterolab. He tested positive for a gluten sensitivity, auto-immune response to gluten, one main-celiac gene and one non-celiac gluten sensitivity gene. Enterolab does not Dx celiac disease; it tests for your body's reaction to gluten.

Does Zachary clinically have celiac disease?? We'll never know b/c we chose not to have a biopsy done. Not to mention we'll never put him back on gluten...it's nasty stuff. What we are 100% sure about is that when we removed gluten from Zachary's diet, we prevented any serious damage from occuring in his intestines and he was immediately relieved of the msierable symptoms he suffered from since he was a little over a year old. That's proof enough for us!

[breann6]

your sons poo, sounds a lot like my sons. they have never ever been truly formed. they look airy/spongy when they are 'formed' and float around a lot of the time. like i posted previously they are typically light in color and loose more often than spongy. my son also has sleeping issues.

i'll see if we can do the gene testing, is that a good idea?

~breann

[ptkds]

My dd's bloodwork came back positive when she was only 16 months old. You can do the blood work and then just put him on the diet and see how he does. It won't hurt him, and you could find the answer! All my dd's are now gluten-free (except the baby) and I will challenge the oldest in about 2-3 months because her blood work was almost normal, but she has all the "classic" symptoms.

ptkds

[Guest nini]

after I was positively diagnosed, we had my daughter tested, her blood work was negative, we did not do the biopsy, but she too had symptoms from birth, was premature, horrible bloody diaper rashes, horrible diarrhea, and behavioral issues as well, like the most severe horrible violent temper tantrum you've ever seen, she refused to eat food, she had been treated for GERD, she was anemic, hypoglycemic and failure to thrive, yet her pediatric GI said it couldn't POSSIBLY be celiac because her blood work was negative. We tried the diet with her and within 3 DAYS I had a completely different child. So much happier and the behavior issues vanished

so I would say in small children DIETARY RESPONSE is the most valid, most painless, least risky test there is. If the child response positively to the diet, you have your answer. We were convinced, and even more convinced when about 3 months into it, she grabbed an oreo from another child at daycare and immediately got sick from it, and it lasted a week. She was 3 at the time. She is now 6 1/2 and she will not willingly eat anything with gluten. She remembers what she felt like on gluten and she doesn't want to feel that way again.

[breann6]

after I was positively diagnosed, we had my daughter tested, her blood work was negative, we did not do the biopsy, but she too had symptoms from birth, was premature, horrible bloody diaper rashes, horrible diarrhea, and behavioral issues as well, like the most severe horrible violent temper tantrum you've ever seen, she refused to eat food, she had been treated for GERD, she was anemic, hypoglycemic and failure to thrive, yet her pediatric GI said it couldn't POSSIBLY be celiac because her blood work was negative. We tried the diet with her and within 3 DAYS I had a completely different child. So much happier and the behavior issues vanished

so I would say in small children DIETARY RESPONSE is the most valid, most painless, least risky test there is. If the child response positively to the diet, you have your answer. We were convinced, and even more convinced when about 3 months into it, she grabbed an oreo from another child at daycare and immediately got sick from it, and it lasted a week. She was 3 at the time. She is now 6 1/2 and she will not willingly eat anything with gluten. She remembers what she felt like on gluten and she doesn't want to feel that way again.

my son was still pooing 5+ times a day up until about 4-5 months ago. all of them loose. the dr said its normal that toddlers have diarreah like that? Since then is when the spongy airy poo started. also, a weird thing is that when he eats spaghetti- he sometimes poo's it out much like it went in. like partly undigested and saucy to the point it stains the potty orange. tmi- i know...does that happen with celiac? he was also premature, at 36 weeks with breathing problems. my pregnancy with him was very very stressful. i had surgery on my left kidney while pregnant- it wasn't working right then the right side also started to not work, which caused preterm labor at 24 weeks. I held out for 12 weeks on bedrest partly in the hospital and mostly at home....I always thought the pregnancy and being on morphene and percocet had something to do with his screaming- He was severly colicky until around 1 1/2 years old- he still can through a fit but not like then....he would spiral out of control and could scream for HOURS on end and vomit it was awful....

he is so fearful of doctors that i am scared to have any bloodwork taken, it will just be SO traumatic for him. i'll do it, just wanted a way around it if there is one... do normal labs do the genetic testing or just enterolab?

thanks.

[Guest nini]

so do the blood testing, but regardless of the results of that, TRY THE DIET. See if it helps. I cringe to think what might have happened if I had LISTENED to the idiot pediatric GI that told me my daughter couldn't possibly be gluten intolerant or Celiac and that she just had "toddlers diarrhea" and I'm sorry that's just NOT NORMAL, and that I should just feed her more whole wheat??? No, I'm glad I stuck with it and got her pediatricians support in the dietary trial. It was way more conclusive and even though she's only 6, she has no doubts that she can't have gluten. She knows how bad she feels on it and won't willingly ingest any.

[celiacgirls]

I agree that the best way is just to try the diet. My daughter's symptoms were not as severe as your child's but they did go away when she was gluten-free. Unfortunately, I listened to the doctors who said it wasn't due to celiac and it took 7 years of tummy troubles for her before I tested her with Enterolab and discovered gluten was really the problem. I could have just followed my own instincts and gone with the dietary response.

There is another lab called Prometheus, I think, that does genetic testing. I'm not sure if you have to go through a doctor for that. My doctor uses that lab but will also accept Enterolab. I went with Enterolab for the genetic testing because they tell you what genes you have. The other lab only identifies the 2 celiac genes, DQ2 and DQ8. Although Enterolab identifies most of the other genes as gluten sensitive genes, I wanted to know what the other ones were in case it is later determined some other genes are at play. In my case, I found out I have DQ8 and DQ1 which is associated with neurological symptoms from gluten. Also, the Enterolab test was cheaper than the Prometheus test and since I was doing it on my own, I could keep it off my insurance.