Recovery Time For 15 Month Old

[shorebird]

I posted this in another section but got no responses despite many views so I'm posting it here.

 

I suspect my 15 month old has Celiac like I do. After months of barely growing, falling off the chart in weight, sandy stools, frequent BM, and rectal bleeding, I decided to put him on a trial gluten free diet. I saw an improvement in his symptoms in just a few days and over time, he started putting on a little weight so I've kept him gluten free (he's been gluten-free for a few months now). The thing is, he's still small for his age. Everyone thinks he's only 8 or 9 months old and are even surprised he can walk. He weighs 19 pounds (6th percentile) and is 29 inches tall (2nd percentile). I'm even still breastfeeding him in hopes it will help his growth. I know children tend to recover more quickly than adults but how long can I reasonably expect him to "catch up" in growth after going gluten free?

 

 

 

*note: yes I do plan on speaking with his pediatrician about this at his appointment in a couple of weeks. I just wanted to hear what others with experience thought about it. 

[StephanieL]

I posted this in another section but got no responses despite many views so I'm posting it here.

 

I suspect my 15 month old has Celiac like I do. After months of barely growing, falling off the chart in weight, sandy stools, frequent BM, and rectal bleeding, I decided to put him on a trial gluten free diet. I saw an improvement in his symptoms in just a few days and over time, he started putting on a little weight so I've kept him gluten free (he's been gluten-free for a few months now). The thing is, he's still small for his age. Everyone thinks he's only 8 or 9 months old and are even surprised he can walk. He weighs 19 pounds (6th percentile) and is 29 inches tall (2nd percentile). I'm even still breastfeeding him in hopes it will help his growth. I know children tend to recover more quickly than adults but how long can I reasonably expect him to "catch up" in growth after going gluten free?

 

 

 

*note: yes I do plan on speaking with his pediatrician about this at his appointment in a couple of weeks. I just wanted to hear what others with experience thought about it. 

 

 

 

I would seriously consider putting the child back on gluten for testing.  Unless you have a Dr. who is willing to dx based on genetics, your history and the childs history, getting an accurate diagnosis.  As you know this is a life long condition to manage and for things like schooling and hospitalizations, you need to know what you're dealing with.    I would try and get to the Dr. asap and see if it's worth trying to even do the blood work now.  How many months gluten-free has the kiddo been?

[nvsmom]

I agree.  Test first and then go gluten-free if at all possible.

[cyclinglady]

I think no one answered because you asked how fast he should recover after going gluten free. No one has an answer to this as everyone is different. I agree with the others in getting a firm diagnosis.

Congrats on breastfeeding still!

[africanqueen99]

There are so many variables about how long recovery takes, but I can comment on the growth aspect.  My youngest was DX at 18 months (after dropping off the charts between 12-18 months.  When she hit 3 years she finally started looking like a typically sized kid - "normal", just a little smaller.  I'd say it took about 9-12 months to go from the little twig limbs to what you'd expect.  She started wearing 12 month clothes at 12 months and didn't jump to the any other size until she was well past 2.  Now that capris are in style she's back to a lot of her 18 month pants - perfect on the waist, just below the knees for playing.   Fierce, but mighty!

 

We totally went through that stage that nobody believed she should be walking and talking because she was so small.  Honestly, her vocabulary was light years ahead of most kids at that age so that totally threw strangers - she was infant size, but carried on these amazing conversations.

[shorebird]

I would seriously consider putting the child back on gluten for testing.  Unless you have a Dr. who is willing to dx based on genetics, your history and the childs history, getting an accurate diagnosis.  As you know this is a life long condition to manage and for things like schooling and hospitalizations, you need to know what you're dealing with.    I would try and get to the Dr. asap and see if it's worth trying to even do the blood work now.  How many months gluten-free has the kiddo been?

 

He's been gluten free for just a few months. I've kept him on a gluten free diet because the few times we slipped up (sneaking bites of his brother's gluten containing food), he went back to having painful stools with rectal bleeding. Honestly, it was so horrible seeing him in so much pain that I just decided to stick with  the gluten free diet. I know he does need to get tested but because I'm not familiar with testing at such a young age, I don't know how he can be tested and when. I was diagnosed via biopsy only so I'm unfamiliar with what blood tests are used. What tests can he get and what type of doctor should he see? A pediatric gastroenterologist?

[shorebird]

There are so many variables about how long recovery takes, but I can comment on the growth aspect.  My youngest was DX at 18 months (after dropping off the charts between 12-18 months.  When she hit 3 years she finally started looking like a typically sized kid - "normal", just a little smaller.  I'd say it took about 9-12 months to go from the little twig limbs to what you'd expect.  She started wearing 12 month clothes at 12 months and didn't jump to the any other size until she was well past 2.  Now that capris are in style she's back to a lot of her 18 month pants - perfect on the waist, just below the knees for playing.   Fierce, but mighty!

 

We totally went through that stage that nobody believed she should be walking and talking because she was so small.  Honestly, her vocabulary was light years ahead of most kids at that age so that totally threw strangers - she was infant size, but carried on these amazing conversations.

 

I know there can be variations in recovery times, but thank you for answering my question! His little arms and legs are like sticks and like I said, he's just so tiny! I hope he catches up soon. The good thing is, we have a better chance of getting him diagnosed early so it won't affect his growth in the long run like it did mine.

[cyclinglady]

Here are the tests and you would want to see a Ped GI and one who knows about celiac disease. I would also bump up your current Ped appointment. He/She might have a good referral to a celiac savvy Ped GI.

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I would visit the University of Chicago's celiac website for more testing information, etc.

Talk to your Ped GI (when you select him). He might recommend staying gluten free until he catches up on weight etc. Then maybe do a gluten challenge prior to school. Whatever decision you make, it will be best for your baby and your family!

Let us know how it goes!

[StephanieL]

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

 

 

Just as a note, NONE of these can be done on your child now because of being gluten free for a few months because the results will not be accurate. The only test you could run now (which isn't in any way diagnostic) is the genetic test.  Being as you (Mom) are positive, chances of kid being positive for the GENETICS is high so it just means there is the genetic predisposition to having it.

[cyclinglady]

Thanks, Stephanie for making that clearer!

[weluvgators]

I cannot comment on the recovery time for your child, but can say that each of my children responded on their own timelines for recovery from gluten exposure.  We did not have chronic growth issues, but in other areas our recovery has been painfully slow at times.  It has taken continual, mindful adherence to strict gluten free protocols.

 

I believe that making a decision to put a child back on gluten when they respond with painful, systemic symptoms is a decision to make with your healthcare provider - ensure a strategy is in place if the joint decision is to reintroduce gluten.  We have utilized standard celiac testing to monitor compliance with gluten free diet and to help evaluate how much to chase other potential, contributing causes.  We have found genetic testing helpful in our journey, and it has helped guide our healthcare providers as well.  In addition to the celiac testing standards, our pediatric GI specialist also ran some vitamin panels that are commonly deficient in her celiac patients.

 

I assume you know the importance of remaining gluten free if nursing a gluten free child (but just as important that you remain vigilantly gluten free as a celiac yourself).  I am absolutely fascinated by the nursing and celiac relationship.  I had a very interesting experience nursing my super sensitive child and wish that there would be further study into the nursing dynamic as it relates to celiac antibody production.  I commend you for continuing your nursing relationship.

 

Another matter to research, consider and discuss with your doctor is the fact that traditional celiac tests like those outlined above are not very accurate for diagnosing the very young.  If I recall correctly, getting correct celiac diagnosis in the population under 2 can be very difficult.  I also believe that this reality should be seriously considered in evaluating the overall strategy for management and diagnosis of gluten issues in children.

 

Good luck getting it sorted.  Putting together a healthcare team to help you is one of the most important parts of getting things figured out!

[shorebird]

Here are the tests and you would want to see a Ped GI and one who knows about celiac disease. I would also bump up your current Ped appointment. He/She might have a good referral to a celiac savvy Ped GI.

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I would visit the University of Chicago's celiac website for more testing information, etc.

Talk to your Ped GI (when you select him). He might recommend staying gluten free until he catches up on weight etc. Then maybe do a gluten challenge prior to school. Whatever decision you make, it will be best for your baby and your family!

Let us know how it goes!

 

Thank you!! My only question is, wouldn't he be too young right now for something like a biopsy? I remember reading something about getting the blood tests done first in children before deciding on an endoscopy.

[shorebird]

Just as a note, NONE of these can be done on your child now because of being gluten free for a few months because the results will not be accurate. The only test you could run now (which isn't in any way diagnostic) is the genetic test.  Being as you (Mom) are positive, chances of kid being positive for the GENETICS is high so it just means there is the genetic predisposition to having it.

 

I do want to get the genetic test done on the off chance he doesn't have the gene for it then we can investigate other possibilities rather than going on and doing other celiac related testing. About how long do children usually need to do the gluten challenge?

[nvsmom]

The gluten challenge is usually the same for adults and children: 8-12 weeks for the blood tests and 2-4 weeks for the biopsy.  The recommended amount of gluten per day is 1/2 to 4 slices of bread per day with 1-2 slices of bread (or equivalent). Withe such a small one, I'm sure the smaller amounts would be enough.

 

The genetic tests (DQ2 and DQ8) are positive in 97% of all celiacs, which means that if the genetic tests are negative it just means that celiac disease is unlikely - it can't completely rule out the possibility.  

 

Children have a higher rate of false negative celiac tests. If you end up with negative results and still suspect celiac disease, consider having your little one go gluten-free for 6 or so months anyways.  It could be celiac disease, or it could be non-celiac gluten sensitivity (NCGS) for which there are no blood tests.

 

Best wishes.

[shorebird]

Thank you all so much! I found a pediatric GI in our area but before I make an appointment, I'm going to have him do the gluten challenge. I don't really want to do it, but if that's the only way to get him properly diagnosed then so be it. 

[GFinDC]

If he has pain and rectal bleeding from eating gluten now, it won't change that if he is diagnosed with celiac.  The only treatment for celiac disease is total gluten avoidance, which you are already doing for him.  Maybe it would be better to wait until he has grown some and is a little older before trying a gluten challenge and diagnosis for celiac.