Please, Please Read - Newly Diagnosed 2 Year Old

[absullivan6]

My son will be 2 in September and three weeks ago he started vomiting.  It would come out of no where, he would vomit and instantly feel better.  Since then, he's been throwing up every 1 - 2 days, been lethargic and just not himself.  He's always been small but his weight is dropping and his belly is a little swollen.
I had bloodwork done for him this week and it came back highly indicative of celiac.  His blood cell counts and liver and kidney functions were perfect.  We saw a gastro today who said based on his symptoms and his blood work, he would not need an endoscopy, but further blood work.  She said she'd be shocked if it didn't come back positive.  
She asked us not to stop the gluten until he gets test results back because if they are for some reason inconclusive, they will then do the biopsy.  She did say we can start to limit gluten to maybe only one thing a day (so a waffle, or a piece of toast).
I'm beyond thrilled we were able to get all of this information so fast but just want him to get better.  He threw up last night and then again tonight.  
How long until he feels better and does this sound consistent to your child's experience?  I am really just looking for support and to talk to other moms.

I kind of want to stop gluten after they take the next blood in direct contrast to what the doctor says because I'm so tired of seeing my son sick and I want relief for him ASAP.

Thank you so much. 

 

 

 

 

[cyclinglady]

Hang in there! Looks like you will have a diagnosis soon. Be sure to take a look at the newbie thread located on this forum under "Coping":

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Moms with small children will show up to comment -- they are probably getting their little ones ready for bed now! Hope your son feels better fast.

[mommida]

I know it is hard to keep giving your son anything with gluten, but it is necessary for any further testing.

 

It is more common for little ones to vomit with Celiac, but it could indicate other problems.  An endoscopy with biopsy will be helpful to diagnose or rule out any other issues along WITH Celiac, and Celiac.

 

Ask any questions you want here.

 

Mom of a Celiac diagnosed at 16 months old, then diagnosed with Eosinophilic Esophagitus at the age of 6 (now 11 and doing great!)

[beth01]

Most of the tests that they run are usually run and resulted within a matter of days, being a weekend it might take a little longer.

 

Welcome to the forum.  I would read the newbie thread and learn about cross contamination, they are in the coping section like Cyclinglady said.  You also need to think about anything that could end up in your child's mouth, art supplies can have gluten in them, shampoos, lotions, it's not just food. 

 

I can't help with any advise for a child so young, my daughter is 11 and we were both just diagnosed.  Just remember though, celiac is hereditary so family members need to be tested every two years ( close family - mother, father, brothers and sisters.  I have suggested some of my family be tested based on symptoms alone ( aunts and cousins) but no one has tested positive but my daughter but I think my son just didn't have adequate testing and is actually positive. 

 

Good luck to you and your son.

[absullivan6]

Thanks so much everyone.
We are in an area with a leading children's hospital and our gastro does not feel an endoscopy/biopsy is necessary.  The blood work thus far was glaring and she has ordered further tests for the genetic screen and a few other things to absolutely confirm, but said she'd be shocked if it came back negative.

I am excited to start him gluten free and focus on getting better!

[africanqueen99]

My youngest was DX at 18 months.  Problems started at 12 months and it took a while to figure out what the problem was.  She also was DX by blood alone - her blood work was crazy high so they didn't do a biopsy (our Ped GI only does them when there is a true need on really young kids).  Anyway, since we didn't scope her we pulled more blood and it was just as crazy high.  (You can see from my signature that I scoped my older two kids b/c it made sense.)

 

I know you want to stop gluten, but do NOT.  Seriously, he's already in pain so finish the testing and get it over with.  Once you turn the corner and clear out your house and change his diet it's so, so hard to go back to gluten and the pain for re-tests.

[mommida]

There is a red flag here, the fact that the symptoms started 3 weeks ago with vomit.  Cases of EE "flare" at the end of summer and most cases are diagnosed by early fall.

 

Talk it over very earnestly with your ped gastro.  As a parent I would never want a child to go through un-needed testing, but there are a few other possibilities that can co-exist with Celiac.  Go through the list of possibilities with the doctor.

[absullivan6]

Thanks to everyone for their words.  My son's blood tests came back today and the doctor was able to 100% diagnose him as his levels were so high.

He has now been gluten free for a week and the changes have been immense.  The biggest one is he hasn't thrown up!  His energy leves are up (at times) and his appetite seems to have increased.  I'm so thankful this was diagnosed so early in his life and we can treat him effectively.  I will be reading all your posts for tips, etc.  Thank you!

  On 8/9/2014 at 1:50 AM, absullivan6 said:

 

My son will be 2 in September and three weeks ago he started vomiting.  It would come out of no where, he would vomit and instantly feel better.  Since then, he's been throwing up every 1 - 2 days, been lethargic and just not himself.  He's always been small but his weight is dropping and his belly is a little swollen.
I had bloodwork done for him this week and it came back highly indicative of celiac.  His blood cell counts and liver and kidney functions were perfect.  We saw a gastro today who said based on his symptoms and his blood work, he would not need an endoscopy, but further blood work.  She said she'd be shocked if it didn't come back positive.  
She asked us not to stop the gluten until he gets test results back because if they are for some reason inconclusive, they will then do the biopsy.  She did say we can start to limit gluten to maybe only one thing a day (so a waffle, or a piece of toast).
I'm beyond thrilled we were able to get all of this information so fast but just want him to get better.  He threw up last night and then again tonight.  
How long until he feels better and does this sound consistent to your child's experience?  I am really just looking for support and to talk to other moms.

I kind of want to stop gluten after they take the next blood in direct contrast to what the doctor says because I'm so tired of seeing my son sick and I want relief for him ASAP.

Thank you so much. 

 

 

 

 

 

[mommida]

I'm glad you have a diagnoses.

 

Some tips...  Carry a snack bag that has many safe options.  Kids are offered so many treats at all different places.  (even the vets office gave my kids candy when they were little)  You are going to have to bend a bit here and include favorite candy.  The point is to make sure Celiac doesn't seem like a punishment and you show your child to make "safe" food choices.

 

When you start baking... gluten free flour is measured by using a spoon to lift out the flour and dump into the measuring cup.  (for some reason pouring the flour doesn't work as well)  When you are using a mixer, you have to mix until you start seeing a faint groove line in the batter from the beater.

 

Don't do anything drastic, like throwing out your old cookbooks.  You will learn how to convert all your old recipes.  You are going to have some "flops" though, so keep your sense of humor.

 

Wishing for a speedy recovery and smooth transition for your little one!

[calabaza78]

I just wanted to pop in and say "hi", as I seem to be on the same timeline with my almost-2 year old daughter and her diagnosis of celiac this August.  She, too, threw up for three weeks on and off, and seemed increasingly lethargic and had balance issues during that time. We had a difficult time getting doctors to actually test for celiac, as they seemed to want to chalk up her vomiting to simple constipation, but thankfully, an ER doctor listened and ran the test when we made our second visit in a week timespan (our pediatrician was pretty much useless throughout this process, so we will be switching practices soon.)  

 

I am surprised they didn't want to do a biopsy?  The (wonderful) pediatric GI we've found assured us that our daughter was almost definitely celiac by her blood tests alone, but that a biopsy was really necessary to make sure we were correct in that diagnosis and to rule any other issues out.  During the biopsy, he found not only evidence of celiac but also gastritis and esophagitis, so we're working on healing those issues too.  Regardless, the gluten-free diet seems to have made a huge change and for that, we're super thankful.

 

I'm sorry you had to go through weeks of vomiting to get a diagnosis, but I hope your son is feeling much better.  

[1desperateladysaved]

I am happy the diagnosis was made and you could take the child gluten free.  Best wishes for total healing.

 

Dee

[LoveyLEVINSmommy]

I'm so happy your son is feeling better!!! My own son is 2.5 and we've been gluten-free since he was just over 15 months or so. Its amazing the difference it makes.

[mommyto2kids]

  On 8/9/2014 at 1:50 AM, absullivan6 said: