Switching to Gluten Free for Toddlers?

[KatieB22]

So I'm new to this and I want to add a little back story of my 3 yr olds history. She was born preemie at 4lbs 4oz, she's struggled with weight since then. She is now only 19.2lbs and maybe 2 1/2 foot tall. She doesn't even fall on the charts, not even close to being on them. The GI we did see did all kinds of blood work and stool samples when she was about 5 months old, and the only thing they said was "dairy allergy" and she was dairy free up until about 2 1/2. Her symptoms have always been; bloating, stomach pain, gassy, constipation, failure to thrive, low weight gain, mushy/liquidy stools, very very strong smelling stool, ezcema &rashes, and troubles sleeping. The whole no dairy dirt literally did not impact her symptoms at all-neither negative or positive-. So we switched her back and again adding it back hasn't caused any issues. Well I've done some research and think it's and gluten issue. So today we have started a gluten free diet. Since she is still young is it possible I can see changes sooner than a few months? I am doing the elimination diet rather than getting her tested or having a colonoscopy done because she already has a severe fear of doctors in general. I'm hoping to at least see changes in her stool first. Also anyone who can give advice on getting her to eat  gluten free products or things they did to make the switch easier is much appreciated. I truly believe it is a gluten issue since no one has found anything otherwise. Thank you in advanced!!

[GFinDC]

Hi Katie,

It's up to you how to handle her testing for celiac disease.  But if you think she has celiac, it is important to keep her eating gluten until the testing is done.  If she goes off gluten before the blood samples are drawn or the endoscopy then the test won't be accurate.  That being said, there is a possibility the testing won't show antibodies anyway, as I think they say it is not always accurate in young children.

If she does have celiac disease, she got the genes from either you or the father or both.  So you should be tested also.

Going off gluten before testing and then going back on it to be tested can be very unpleasant.  The testing requires 12 weeks of eating gluten for the blood antibody testing, and 2 weeks of eating gluten for the endoscopy.  Symptoms seem to be worse for eating gluten after being off it for a while.  So some people can't even complete the 12 week gluten challenge period.

Some parents want the formal diagnosis to show the schools so they can take care of food issues that may come up there.

I am not saying you shouldn't take her off gluten though.  Only you know how serious her condition is and if it is worth while doing the testing.  If she has only been gluten-free a  few days, then you could probably still get the blood antibody testing done.

Welcome to the forum Katie!

There is a newbie 101 thread with helpful tips in the Celiac Disease Coping With section.

[pschwab]

We had a similar experience. My son is three now. When he was two, we noticed he was not gaining weight, was throwing up sporadically and was having weird stools everyday. We took him to the pediatrition and did stool, blood and urine samples. His antibody levels were through the roof (300) so we were referred to a pediatric gi dr. The gi dr said we could either do a biopsy or get genetic testing done. We chose the genetic testing so we could immediately put him on a gluten free diet. When his genetic test came back positive, we had a formal celiac diagnosis that we can now use to get him a 504 when he starts school. I totally understand not wanting to do a bunch of testing/dr stuff, but I'm glad we did and know for sure what he has. I was happy not to have to do the biopsy. We also had our two older boys tested for celiac and the gene in one quick blood draw. If you've already made the choice to go gluten free, I can tell you the food issue is not a big deal in most cases. We chose to make our home completely gluten free due to the young age and tendency to put stuff in his mouth all the time. He knows anything at home is safe to eat, but he has to always ask when we aren't at home. We've also drilled it into him that you never eat anything given to you by anyone but mom and dad. If you can find a decent grocery store (or multiple stores) there are many toddler friendly options out there. Going out to eat or to family functions is harder for us, but I just pack meals and snacks for him wherever we go. We have found two safe restaurants by us using the Find me Gluten Free app. Our dietician also recommended gluten free shampoo and lip balm since they can't keep that out of their mouths always at a young age. Be wary of art supplies as well (like play doh). We have an awesome gluten free playdoh recipe from online that he loves. I'd be happy to provide a list of some good kid friendly brands we've discovered through trial and error if you're interested. He also loves the book "The Celiac Kid". It breaks the condition down into more kid friendly terms. Good luck!

[KatieB22]

Thank you! I plan to call her Dr tomorrow and ask if they can order the blood testing for me. Her GI is an hour away from us so it's easier to see her Dr if they can do so. At her last visit-last week- her Dr was referring her to a genetics counselor but we have yet to get the appointment date for that. Getting her to eat in general has always been a struggle and she's of course super picky. I went out and bought things I know she would regularly eat just gluten free. We just started gluten free today so I know something should show on testing. As bad as it sounds I really hope to see the results I've been expecting because if not there is almost no other answer to what is causing her to have delayed growth. Development wise she's right on track, but she is extremely small for her age. For her I think it'll be trial and error on what foods I can get her to eat because how picky she is. 

[kareng]

Your pediatrician/family practice doc can order the genetic testing for Celiac.  My Family practice  doctor did

[pschwab]

Mine definitely have classic toddler favorites. Target has Frozen (like the movie) gluten free chicken nuggets that mine love. Costco also has chicken nuggets they like...I think they are Tyson brand but I'm not sure. He used to love goldfish, and it was hard to find a good substitute. Live Gluten-Free cheese crackers from Aldis are one he really likes. I totally understand wanting to know why your child is small. My guy has been in the 5th percentile for height and weight for the past year. I'm finally noticing some significant growing in the past few months. We noticed a jump in language development, general disposition and health once we went gluten free with him. I think he was working so hard not to feel terrible that other stuff wasn't such a focus. We noticed improvement within two weeks and his antibody numbers dropped from 300 to 71 in 3.5 months. I'm excited to see his numbers in February.

[KatieB22]

Oh wow. Yes she's always been in the 1st percentile, but when you actually look at her chart she's made her own scale. Shes 19.2lbs and gains at most 1lb every 3 months. I'm definitely going to ask her Dr tomorrow to check her levels because I have no idea what else could cause her slow growth. I have an Aldi's near so I'll be checking them out for their food too. So far I've been to Walmart and Kroger's that we have close to search for gluten free foods. I guess the most alarming things for me is her lack of growth and her foul and very mushy stool. Shes never had a normal poop and it's quite concerning to me. I'm hoping for some answers so I can get her on the right track to getting better and growing. If she is indeed gluten intolerant should I get her little sister tested as well? I'm also due next month with a little boy so I'm assuming I should test them all!?

[squirmingitch]

This is the full, current celiac blood panel. It's super important that your doc orders the complete panel as kids test weirder than adults. The DGP is most often the ones the little kids show up positive on so make that very clear to your doc.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

[Stringcheese32]

Have you ever had her thyroid levels checked?

TSH, free t4, free t3, reverse t3, and TPO and Tg antibodies?

I'm currently seeing an endocrinologist for my 3.5 year old who has dropped off her curve (currently 2% for height and 5% weight).   When a child is failure to thrive the first two things that come to mind are thyroid and celiac, and then possibly growth hormone deficiency.  (My daughter has been constipated since we introduced solids at 6 months.)

[KatieB22]

Yes she's had her thyroid checked and she's also been checked for diabetes. She has never been on the charts honestly no matter what we've tried per Drs recommendation. Shes yet to be tested for Celiacs or have her hormones checked.

[Stringcheese32]

We just had our first visit with the endocrinologist last week and she took an x ray of our daughter's wrist and hand to assess bone age.  Our daughter's bones are actually only matured to 2.5 years not her actual age.  I would definitely seek diagnosis for celiac, because if it is celiac then you have your answer, but if it's not then you know you need to look somewhere else.  Our daughter's next appointment is with a GI.  I would pursue both with your daughter.  If she does have celiac disease it would be very important for all her siblings to be checked as well as yourself and her father.

I'm sorry you're going through all of this.  I know how stressful this all can be especially while pregnant.  Hang in there.

[KatieB22]

We did see a GI when she was an infant but they didn't do much, honestly I didn't like the Dr we seen she was very rude and not exactly friendly. I'm hoping her Dr will do the Celiacs test through them and send it off because she told me they could do so. Shes being sent to a genetics counselor as well we are just waiting on that appointment to be scheduled. I'm really hoping we can find answers because I feel like we've tried everything and nothing has helped :/