Working On Diagnosis For 2 Year D

[Mylesmommy]

Newbie here. I just wanted to share my journey to see if anyone can relate.

My 2 year old had diarrhea on and off for at least 6 months before I thought anything of it. He is a thumb sucker and kid number two, so I just thought he was getting sick until someone pointed out his diarrhea and thag no one else was ever sick. I think I was in denial!

His height also dropped from the 56th percentile to the 27th percentile in only 6 months.

Sent celiac panel and a ton of other stool labs, everything normal except low igA. My pediatrician just calling it toddler diarrhea (which I think is just code for "I give up")

Took him off gluten on a whim....eczema gone. Magically sleeping through the night. Diarrhea mostly gone. Way better behavior.

Saw a GI doctor who, and we decided to do a gluten challenge and get a scope.

Since we restarted the gluten, he has been so sleepy. He has a lot of normal high energy moments, but a lot of

Moments he just lays down on the floor randomly and sucks his thumb. Alternating between loose stools and diarrhea, occasionally formed (is that normal, or if he really had celiac, would it be constant diarrhea?). Somewhat bloated belly. He just isn't himself again.

It's really hard to put him through this. I feel like I am poisoning him!

His weight is allright per the charts, but he looks thin to me. I am frustrated that the pediatrician wasn't concerned with his height. That's a big stop in percentile a if you ask me!

Anyway, just wanted to throw myself out into the murky waters! It has been a frustrating ride! Hoping someone can relate. I am really not sure if he has celiac , but certainly did his best of gluten

[kareng]

Newbie here. I just wanted to share my journey to see if anyone can relate.

My 2 year old had diarrhea on and off for at least 6 months before I thought anything of it. He is a thumb sucker and kid number two, so I just thought he was getting sick until someone pointed out his diarrhea and thag no one else was ever sick. I think I was in denial!

His height also dropped from the 56th percentile to the 27th percentile in only 6 months.

Sent celiac panel and a ton of other stool labs, everything normal except low igA. My pediatrician just calling it toddler diarrhea (which I think is just code for "I give up")

Took him off gluten on a whim....eczema gone. Magically sleeping through the night. Diarrhea mostly gone. Way better behavior.

Saw a GI doctor who, and we decided to do a gluten challenge and get a scope.

Since we restarted the gluten, he has been so sleepy. He has a lot of normal high energy moments, but a lot of

Moments he just lays down on the floor randomly and sucks his thumb. Alternating between loose stools and diarrhea, occasionally formed (is that normal, or if he really had celiac, would it be constant diarrhea?). Somewhat bloated belly. He just isn't himself again.

It's really hard to put him through this. I feel like I am poisoning him!

His weight is allright per the charts, but he looks thin to me. I am frustrated that the pediatrician wasn't concerned with his height. That's a big stop in percentile a if you ask me!

Anyway, just wanted to throw myself out into the murky waters! It has been a frustrating ride! Hoping someone can relate. I am really not sure if he has celiac , but certainly did his best of gluten

Which celiac tests did they do? A low IGA means that the IGA version of the tests don't work. They need to do the other version. Did they do that? For my 3 yr old nephew, the standard tests they do where he went is the total IGA and the TTG- IGA. Then if the TTG is negative and the IGA is low, they will do the Other version of the TTG.

[tommysmommy]

I would seek a second opinion asap. The decision to do a gluten challenge at this point so they can retest sounds dangerous to me. Whether celiac or gluten - intolerance, which won't show up on any test - it sure sounds like you figured out what was hurting him (and if the gluten challenge is making him sick again, that only supports the notion). A medical diagnosis is important but I'd question every doctor you see if it is more important right now than to bring your baby back to health. Also do a little research, i found that testing on children under 2 is not always accurate. You are not alone! Follow your insticts mom. Good luck.

[Mylesmommy]

We have decided to scope to make sure that it isn't something else like eosinophilic gastritis. I really trust my GI doctor (I actually work as a nurse in the childrens center, so I hand picked my GI doctor!)

Question though....would he have frequent/constant diarrhea with celiac? He only stools two or three times a day, and it's not always watery.

All I know is right now his behavior is completely different and we will be going back to gluten free as soon as this is over! Poor boy.

[mommida]

The poster started the challenge and the little one is having Celiac symptoms again.  (The symptoms are not life threatening for the moment.  If her child gets seriously ill, I'm sure she will get to the hospital quick as lightening.) 

 

This is from a parent that did have to hospitalize my daughter for dehydration from the gluten challenge.  The scope was not done because she was too ill.  She was diagnosed with "probable" Celiac at 17 months old and then scoped and diagnosed with Eosinophilic Esophagitus when she was 6.

 

If things get to the point of needing medical attention call the ped's office and tell the Dr. to do a "courtesy call" to the hospital that you are on your way.  (Some morons use the ER for ringworm checks.  You don't have time to wade through the masses of morons.  When little ones need an IV, every second counts and gets harder to get the needle in.)

 

Sometimes the reaction tends to have a buildup and seems acute, or a constant taxing of the immune system just becomes "slightly chronic" .  Then there is the "silent Celiacs", had no clue they were sick just found out they were anemic.

 

Poor little one, get better soon!

[Mylesmommy]

My son had his endoscopy with biopsy today. Did well, no visible issues so waiting for biopsy results. Straight back to gluten free diet for him.

Gave him a bowl of goldfish for a last hoorah....he was up 4 times in the middle of the night. I don't care what the biopsy says, his body cannot handle gluten! Hoping it doesn't show anything but at the same time people look at you like you are crazy if you say your child is gluten intolerant! Oh well, I will so whatever it takes to keep my child happy and healthy.

[mmcc54]

Hey momma this sounds very similar to my situation! Our second daughter was happy healthy good sleeper and in the 90th percentile from birth till 9 months we started solids she started not sleeping, not growing and constantly had rashes her pedi dismissed everything said she was more active now, I was swaddleing her over dressing her so she had heat rash a lot ect..her constant loose stoll with whole chunks of food ect...was just because she didn't have teeth yet all babies do that it all seemed un normal to me...at 12 months I switched to a dif ped..where she was marked failure to thrive for not even being on the charts he immediately did a celiac panel her IgG was pos..her biopsy was neg she went gluten for 5 months did great finally growing, finally sleeping down to only 1 normal poop a day!!! Her GI said give her some gluten see what happens...she had a muffin and her rash came back she was soooo lethargic fell asleep on the floor, fell asleep sitting up you name it, vomiting ect...hope your LO feels better but it sure does sound like a gluten thing to me! AND SWITCH PEDI you know your baby they don't find someone who will lisen to you!!! My email is Open Original Shared Link if you ever want to compare notes ect

[mamafish]

My son had his endoscopy with biopsy today. Did well, no visible issues so waiting for biopsy results. Straight back to gluten free diet for him.

Gave him a bowl of goldfish for a last hoorah....he was up 4 times in the middle of the night. I don't care what the biopsy says, his body cannot handle gluten! Hoping it doesn't show anything but at the same time people look at you like you are crazy if you say your child is gluten intolerant! Oh well, I will so whatever it takes to keep my child happy and healthy.

 

I might be saying stuff you already know , but it sounds like your son has at least partial IgA deficiency, if his total IgA was low.  As someone upthread said, that will mean the standard celiac panels won't work.  The test you want is the IgG-DGP - it works on people with IgA deficiency (my family's issue!), and it's the best diagnostic for celiac with young children, who often don't test positive for tTG AND often don't biopsy positive either.  So if you were just on a gluten challenge, it might be worth getting that test done?  (If I had a little kid who tested positive for IgG-DGP, even if the biopsy was negative, I'd assume they were celiac).  

You might want to read up on IgA deficiency as well if it isn't something you're already on top of (I envy you your medical background!) - in some people, it has no effect, but it's sometimes associated with things like recurring infections and autoimmune diseases, so it's a good one to have information on.