Typical Symptoms In Young Kids?

[Guest MyKidsMom]

I was wondering if there were some tell-tale signs in infants who had celiac?

My daughter who is now 2 has always been lactose intolerant. When I was pregnant with her I became lactose intolerant and she is too. We found out within the first six weeks of her life when she had blood in her stool. Very scary!

Also, this is going to be a crazy question, but it seems like most people here are comfortable with the discussion of BM. What should her diapers look like? Should she have solid stools? She still has a lot of loose or pasty stools.

And the worst part is her sleeping habits or lack of. At first I thought it was just because I was a new parent, but I have tried almost everything and now her younger brother who is 8 months old sleeps through the night with ease. Is it that children can be that different or is it celiac? My daughter has a hard time winding down to go to sleep even with a routine and then frequently wakes up during the night. She also has what doctors call "sleep terrors". I have always had bad dreams, especially when I was younger, but since going gluten-free much, much better.

Just in general, my daughter is very active!!! She just can't seem to sit still, almost like she is crawling out of her skin.

Lastly, if I try her on a gluten-free diet will that ruin any results for future testing and how soon can she be tested? How about my 8 month old son?

Lots of questions!

[Guest nini]

my daughter never had a formed stool in her diapers... most of the time she had a terrible rash that went along with it. There were definite behavioral things that I noticed, like being fidgety, we called her squiggle butt because she couldn't sit still. She NEVER slept through the night until after she went gluten free at three years old. by the time she was two and 1/2 she had terrible mood swings, way worse than the typical terrible two's... she was VIOLENT beyond comprehension. She would kick and bite and scream and hit and throw herself on the floor... it was horrible.

re testing: it isn't very reliable in young children, but you may want to go ahead and have the testing done while she is still eating gluten, and then REGARDLESS OF THE RESULTS try her on the gluten free diet after all testing is done... You may find that she does test positive for it, or she may not... Either way, go ahead and try the diet, because even if it's not Celiac, it could be early stages of it or gluten intolerance, the response to the diet will be your answer. You don't HAVE to do the tests if you don't want to... but consult with her pediatrician before making your decision

[junieb]

Wow - "pasty", as you described it, is EXACTLY how I would descrie dd's poop when she was in diapers (when she potty trained at 3 1/2 I described them as "mushy". They were never formed by any stretch of the imagination. She had at least 5 poopy diapers a day. The smell could have killed an elephant. And, as luck would have it, she didn't like the rice baby cereal too much - what was her favorite that she had at every meal???? BARLEY of course! Hindsight's 20/20 I guess but it stinks that it took 7 years for me to figure it out and I bet the doctors never would have since they blew off all my comments about her symptoms. Fatigued beyond belief, STARVING all the time, bloated (if she was older you would have thought she looked pregnant!), awful stomach aches every night, the most awful diaper rash that would happen if poop was left in her diaper for more than 2 minutes or if her bottom wasn't wiped squeakey clean after pooping in the toilet, she still is soaked at night, mood swings as she got older (but that may happen to all kids I guess), etc, etc. After 1 day gluten-free she had her first normal looking poop and stopped having daily stomach aches. Within 2 weeks her belly started thinning out - she went DOWN 2 pants sizes - did not lose weight, it was just from the bloating alone! She is now, about 6 weeks later, not as tired as she used to be (still needs a lot of sleep but is not so fatigued that she can't move after school.

[Nancym]

There was a little feller on TV, "Mystery diagnosis", who had no GI symptoms at all. But he just didn't grow well, didn't develop well mentally and had seizures and went all spacey eyed and non-responsive. It was a very unusual range of symptoms.

[Becky6]

Belle was a very cranky baby, had explosive bms's that went up her back, spit up all of the time, she was anemic and did not sleep well at all, she also had bad rashes on her bum. She has always had messy bm's that were very foul smelling. She had a chronic runny nose and sinus infections for over a year! she was not gaining much weight and is just 28 lbs at almost 4. Her blood test was neg in July and she then went dairy free and it helped a bit but finally 6 weeks ago I put her on a gluten-free diet and she has had her first formed bm in her life!!! Her runny nose and sinus infection went away and she is not so crabby. She also had leg aches and they have left. I am so glad I put her on the diet instead of messing with the endoscopy! I also went gluten-free after seeing the symptoms and I have not felt this good in 10 years! Good luck!

[Smunkeemom]

Annika got sick really fast, she was fine at 9 months and then very sick by her 1st birthday, she threw up everything she ate, it didn't even look digested, it would come back up pretty much how it looked on her plate. She had fatty smelly diapers, and a bad bad rash all the time (even though I kept her clean), she seemed to have no energy, she would either sleep or cry, or eat and throw up, she wouldn't play or laugh or even smile, she regressed, she went from speaking in complete sentences at 10 months to not saying anything (not even ma-ma) by 12 months. She ended up losing 1/2 her body weight before we found out what was wrong with her. The doctors wouldn't listen to me, they kept telling me she had a 'stomach virus'. I took her to the doctor and the ER more than 9 times in 2 months, and in the month before she turned a year old she was in the hospital for 23 days, they would send her home and the next day I had to bring her back. (twice it was the same day) She ended up on a feeding tube, but couldn't keep that down, they had to put a central line in and feed her straight to her veins. By the time she was 12 months old she weighed 11 pounds. She had weighed in 23 at her 9 month appt. She had a very distended belly too.

When Kathryn started getting sick, same exact symptoms, I took her to the doctor, they didn't even want to discuss the possibility of celiac disease, even though I later found out her blood tests were positive.

If you think your child has celiac disease try them 100% gluten free for a while and see what happens, I really don't trust doctors with this disease, they almost let Annika die. I am not trying to scare you, really. Most kids don't get that sick, but you have to be the parent, I should have been doing more for Annika instead of listening to the doctors, I knew she was sick, and they didn't do anything. Listen to your "mom voice" and do what you feel is best, hopefully you can find a doctor that will listen, but if you don't, gluten free really isn't that bad, and if it works it's worth it.

EDIT: I forgot to put in the good news, after 6 months gluten free Annika was back up to average weight, she has fully recovered and is now above age level development. It's like she is a whole different kid. Kathryn hasn't been gluten free very long, but she is getting better everyday.

[KayJay]

Annika got sick really fast, she was fine at 9 months and then very sick by her 1st birthday, she threw up everything she ate, it didn't even look digested, it would come back up pretty much how it looked on her plate. She had fatty smelly diapers, and a bad bad rash all the time (even though I kept her clean), she seemed to have no energy, she would either sleep or cry, or eat and throw up, she wouldn't play or laugh or even smile, she regressed, she went from speaking in complete sentences at 10 months to not saying anything (not even ma-ma) by 12 months. She ended up losing 1/2 her body weight before we found out what was wrong with her. The doctors wouldn't listen to me, they kept telling me she had a 'stomach virus'. I took her to the doctor and the ER more than 9 times in 2 months, and in the month before she turned a year old she was in the hospital for 23 days, they would send her home and the next day I had to bring her back. (twice it was the same day) She ended up on a feeding tube, but couldn't keep that down, they had to put a central line in and feed her straight to her veins. By the time she was 12 months old she weighed 11 pounds. She had weighed in 23 at her 9 month appt. She had a very distended belly too.

When Kathryn started getting sick, same exact symptoms, I took her to the doctor, they didn't even want to discuss the possibility of celiac disease, even though I later found out her blood tests were positive.

If you think your child has celiac disease try them 100% gluten free for a while and see what happens, I really don't trust doctors with this disease, they almost let Annika die. I am not trying to scare you, really. Most kids don't get that sick, but you have to be the parent, I should have been doing more for Annika instead of listening to the doctors, I knew she was sick, and they didn't do anything. Listen to your "mom voice" and do what you feel is best, hopefully you can find a doctor that will listen, but if you don't, gluten free really isn't that bad, and if it works it's worth it.

EDIT: I forgot to put in the good news, after 6 months gluten free Annika was back up to average weight, she has fully recovered and is now above age level development. It's like she is a whole different kid. Kathryn hasn't been gluten free very long, but she is getting better everyday.

That is horrible! You must have been so scared I am so glad that she is doing better now.

[mommida]

Get a Celiac blood screening panel before you start the diet. ( Like it was suggested, I would try the diet regardless of the results. It could be at least one clue for a proper diagnoses. If there is a positive and you decide to genetic test it would be pretty clear for a diagnoses without the endoscopy with biopsy. You would have to consider a positve reaction to the gluten free diet.)

If you start the diet and your child improves, you won't be willing to do a "gluten challenge" for testing later. Some people notice more extreme reactions to an accidental gluten exposure after starting the gluten free diet. Testing is NOT very accurate in young patients. Gluten Challange can be very dangerous to a child. (My child ended being hospitalized.)

The pediatricians were more comfortable testing for cancer before doing a Celiac panel.

[Merika]

I What should her diapers look like? Should she have solid stools?

She should be having normal, adult-like poops, once a day. Actually, from a bit before age one, this is true of healthy kids.

Merika

PS. Generally, testing in kids age 2 and up is pretty reliable. I'd definitely test first, and then do the diet (like while you're waiting for results and then some).

[kathy1]

[quote Gluten Challange can be very dangerous to a child. (My child ended being hospitalized.)

The pediatricians were more comfortable testing for cancer before doing a Celiac panel.

[key]

My son was very fatigued all the time, cranky, had always had runny stools. THen once we started solids he would have undigested food in his stools, pale in color and very foul smelling. He also started having like 6-10 diarhea diapers a day. HE ate horrible. Would gag on his food too. Then we put him on the gluten-free diet because I read about celiac and he got better in three days and by two weeks he was a different baby!! It was very obvious. HE was diagnosed just on his weight gain and he was SO much happier. He wasn't walking either, because he was so weak, I believe.

Anyway, THat is about it. I went and got tested and I have celiac too, so it was very obvious then.

Testing isn't accurate in children under two years old. It is really up to you though. If you need a doctors diagnoses, then don't start gluten-free until you get one.

MOnica

[Guest nini]

my daughter was 3 when she was tested, and first of all, the Dr. only ran 2 tests... and second, refused to acknowledge that it could be celiac even though I have it, and third, the tests he did run were inconclusive... so it's not just kids under two that the testing isn't that accurate in... it may make a difference if the Dr. runs all of the complete celiac panel, but in my daughter's case, she wasn't even eating enough food to even get the "reccommended" amounts of gluten to have an accurate test. It was like pulling teeth to get her to eat ANYTHING. For the longest time I had to supplement her with the Pediasure shakes because she wouldn't eat food... What made me start to suspect Celiac was when she had a holiday from daycare because I was on vacation, and was home with me for over a week and during that week I just fed her what I was eating and I was already on the gluten free diet, so, for a whole week at home she started to improve and eat better and behave better and feel better, and then when she went back to daycare and ate what they served for lunch and snack, the vicious cycle started all over again. I had a "DOH" moment when it occured to me that maybe she was having a problem with gluten as well. The Ped. GI refused to even listen to me and basically only ran the two tests he did run, just to "humor me"...

[mommida]

A gluten challenge is starting the gluten free diet and then reintroducing gluten back to the diet, mostly done for testing.

[2Boys4Me]

My son was diagnosed August 2005. The only reason we found out, is because the previous November we had his iron levels checked, because since he started kindergarten, he was falling asleep at the supper table every day. His iron (which is measured in a unit I don't remember) should have been between 10-110. It was 3. He was put on liquid iron and a month later it was only at 4. We doubled the dose and then in June he saw a pediatrician who ran a boatload of blood tests. By then, his iron was at 10, but he tested positive for Celiac. We had an appointment with a pediatric Gastroenterologist in July, biopsy in August.

Looking back, he did have a slightly distended stomach, and crazy mood swings, but I figured the mood swings were simply because he was spending all his good energy being an attentive, obedient, good listener and learner at school and he had nothing left over for home.

He was toilet trained by 2 yrs 10 months, so I have no idea what was happening in the bathroom, I wasn't involved. He never complained of stomach aches or other gastro issues, so for him the symptom was anemia.

[Guest MyKidsMom]

Thanks so far for all of your replies...they have given me a lot to think about.

First, what test would you recommend? Probably the complete celiac blood panel?

Next, my husband is reluctant about the test and starting the diet for her, so I have some work to do there. He has been very supportive of me, I think he is just hoping she does not have it and is not wanting to deal with it yet.

The comment about the anemia makes me wonder if my 8 month old son has it, too. Since I first wrote he has been to the doc and he is severely underweight and anemic.

I will be in touch!

[Guest nini]

I forgot to mention that at my daughter's 3 year checkup, she was anemic AND hypoglycemic AND underweight and undertall... she was only in the 10th percentile in weight and 25th percentile (I think) in height...

[2Boys4Me]

Oh yeah, Nisla's comment about being underweight and undertall reminded me.

Ty was usually about 5% on the chart for weight and about 25% for height. He was following a growth curve of his own, not one that fit into the charts. He was 7lbs 2oz at birth and then slowed down from there. I'm not sure when the Celiac was "triggered"; he always had normal diapers up until he was toilet trained, so I think it had to be after that, maybe the start of kindergarten was the stress needed to kickstart the celiac. We weren't concerned about his height and weight though, and neither was the doctor because he has two tall (5'8" and 6') parents who are both reasonably slim. Dad was always the tallest kid in class and stopped growing about grade 8 or 9 whereas I was always the shortest kid in class and creeped up a couple of inches a year starting in 8th grade until I was tall. We just figured he'd be the shortest and start a growth spurt when he was older. He followed the same growth pattern as his big brother who doesn't have celiac or anemia or anything suspicious. We just always figured 2 tall skinny parents=2 tall skinny kids and if they're not tall they'll catch up like their mom, aunt and uncle did.

Meanwhile, he's gained 2lbs since August when he started the diet.

[Guest MyKidsMom]

My kids are both below average for weight, daughter 25%ile and son below 5%, but above average for height, daughter 95%ile and son 80%. I was very tall and slender as a child and my husband very slender, too, but now beginning to wonder...

Regarding the enterolab tests...has anyone had them done on their toddler or infant? Also, has the testing been covered by anyone's insurance?