Would Like More Info...

[MrsYoung84]

Hi,

I have a 15 month old daughter who hasn't gained any weight since she was 11 months old. She's currently fallen off of the charts @ 17 lbs. 11oz. She's otherwise healthy I think: and a very clingy, but happy baby. She used to look healthy as well, but now, she has a swollen stomach and her arms and legs look remarkably thin. The skin on her bottom is even starting to become a bit saggy.

Other than the absence of weight gain [or failure to thrive as the doctors have so nicely put it ] she was fairly loose stools and they are always about the color of her skin tone, so very light. She also doesn't eat very much sometimes, and eats a good amount @ others.

They've put her on Pediasure for the next 6 weeks to see if it helps, but if it doesn't: they plan on doing blood work to check for Celiac and other potential culprits for her small size. The more I read about this condition though, the more I think I'm just going to request the tests now and find out.

I'm so worried about her now, and I feel so bad for getting frustrated @ her not eating and being so clingy all of the time. When all this while she was probably in pain.

I need some tips on a gluten free diet for a young toddler! How did you all handle having young children with this disease?

[Nantzie]

Hi!

Welcome to the forum. It sounds like your daughter has some very strong classic symptoms, especially the sagging skin on her buttocks and the light stools.

You need to keep feeding her gluten until the testing is done. The blood testing actually detects the antibodies that the body releases to attack the gluten. If she's not eating gluten, the body doesn't produce the antibodies and you'll end up with a false negative.

I think you've got a good instinct to ask for testing ASAP. Sometimes doctors will diagnosed celiac, or at least gluten intolerance with just a blood test, which may be an option since she's so thin.

My kids were also very clingy and went back and forth between not eating at all to eating more than me and still being very thin. They're both thriving now on a gluten-free diet.

I'm glad you found us here, and I hope she starts feeling better soon.

Nancy

[shayesmom]

I need some tips on a gluten free diet for a young toddler! How did you all handle having young children with this disease?

I think that the earlier they are diagnosed and that you start the diet....the easier it is in terms of your child adjusting and it not being such a big deal.

There are a lot of naturally gluten-free foods that toddlers love. And I have also found that making snacks, meals, etc. is a lot of fun for both my dd and I. Your child can have all the fresh fruits and vegetables that she wants. Many common snack foods (like Lay's Potato Chips, Fritos and Tostitos) are also gluten-free (and free of dairy and soy as well). Hummus makes for a great dip at snack time as does salsa. Lean meat, fish and eggs are also gluten-free. You may be surprised at how many meals you are used to can be converted to this diet and that the whole family can enjoy.

One of my dd's favorite things is when I take her out to go berry-picking. A local market has fields of strawberry, blueberry, raspberry and blackberries that you can pick yourself. I take dd out for about 45 minutes to 1 hour and we have some fun together on a nice day. When we get home, we make jams, jellies, pies and crumbles (and I let her eat as much as she wants to once they're rinsed). She LOVES this!

If you're interested, you can PM me and I can send you a copy of a week-long gluten-free menu with snacks as well as a month-long lunch menu. I think you may be surprised at the variety...and in truth, you could add a lot to it as my menu is also dairy and egg-free as well as very limited in soy.

I wish I had a dollar for each time Pediasure was recommended for my dd. If they had tested in those first 6 months that they pushed it on us...they would have realized that she was allergic to half the stuff in it. Don't let them drag you for too long. It's rarely worth it.

[mominbaltimore]

Hi! This is my first post and I want to thank everyone for the wealth of information I've gained over the last few months from on this forum.

I would recommend requesting the blood testing now. My 18 month old daughter was just diagnosed last month after 4 months of trying different things including pediasure. She went from being outgoing and happy to extremely clingy and fussy. She also had (has still )the very swollen belly, stick like arms and legs, and saggy skin on the bottom. We had months of projectile vomiting, constipation(stools were very light in color),listlessness, fussiness, and weight loss. The sooner you have the testing done the sooner you can have the biopsy(if needed) and start the gluten-free diet. The change in diet has done wonders. She has gained 2 pounds in a month (she hadn't gained since she was 9 months old) and is once again a happy, energetic toddler. I've learned over the last year to go with your gut instinct and not to worry about how many times the pediatrician has seen or heard from us in a week!

I'd love to share recipes and learn more from others who are on this same journey!

take care and please keep us posted!

[FeedIndy]

My DD is also 15 months old and I've found it is actually pretty easy to keep her on a gluten free diet. My difficulty with her is that she also has trouble with soy, chicken and beef. It has been harder with my older 2 because they are used to favorites, but babies and toddlers don't have all the starchy things ingrained yet. She loves fresh fruit which is naturally gluten free anyway. There are plenty of gluten free cereals-even mainstream things. Dinners were very easy to convert since I already cook with fresh ingredients.

You are lucky to catch it this early as it will just be a way of life for her. She won't have the struggles that older kids have with missing out on old favorites.

[Nic]

If your child does in fact have Celiac you will find that the diet is not that difficult especially if you are changing her diet at such a young age. She will never remember anything else. Besides the foods that are naturally gluten free there are so many companies that make all of the good childhood treats and my son does not know the difference anymore. We have found things from fish sticks and chicken nuggets, to brownies and cookies that are all very good. He doesn't want for anything because anything that can be made with gluten can be made without (sometimes it just takes some trial and error ).

Nicole

[Kibbie]

Hi,

I have a 15 month old daughter who hasn't gained any weight since she was 11 months old. She's currently fallen off of the charts @ 17 lbs. 11oz. She's otherwise healthy I think: and a very clingy, but happy baby. She used to look healthy as well, but now, she has a swollen stomach and her arms and legs look remarkably thin. The skin on her bottom is even starting to become a bit saggy.

Other than the absence of weight gain [or failure to thrive as the doctors have so nicely put it ] she was fairly loose stools and they are always about the color of her skin tone, so very light. She also doesn't eat very much sometimes, and eats a good amount @ others.

They've put her on Pediasure for the next 6 weeks to see if it helps, but if it doesn't: they plan on doing blood work to check for Celiac and other potential culprits for her small size. The more I read about this condition though, the more I think I'm just going to request the tests now and find out.

I'm so worried about her now, and I feel so bad for getting frustrated @ her not eating and being so clingy all of the time. When all this while she was probably in pain.

I need some tips on a gluten free diet for a young toddler! How did you all handle having young children with this disease?

My daughter was 18 months old when she was diagnosed. She was and has always been a "big girl" coming into this world at 10 lbs. Anyhow at her 15 months apt she was still in the 98th percentile and about 1-2 months after that I noticed that my normally independent and happy baby became more clingy and grumpy. I remember calling my mom and telling her that I wished there was an "off button" that I could use just to get a moment with out her hanging all over me whining.

My daughter still has and always did have a 'pot belly' but it was VERY hard when we were going through tests (I'm not sure if it was always hard or what... I know after we went gluten free it became soft... thought she still has quite a belly) The day of her biopsy I took pictures and it was the first time I noticed just how skinny her legs and arms were. Her biopsy came back positive and we've been gluten free since then. She'll be 2 in a month.

I actually found that being gluten free isn't as hard as my Dr. made it seem. I do feel that I should qualify that statement with I cook a lot 26 out of 30-31 day in a month I cook. I also made my own baby food. So the change was just in the ingredients not what I was doing. We also decided to make the house a gluten free one so everyone when they eat at our home is eating a gluten free meal.

Really I'm just glad to have my happy independent naughty toddler back

[MrsYoung84]

Thank you so much to everyone for your responses! I'm so glad I found this forum because I was completely clueless about this condition and the diet seems so overwhelming but you've given me some real encouragement that it might not be so bad after all!

I went ahead and called the pediatrician to request the blood work be done this week. I've been completely clueless as to why she wasn't gaining and I was really getting tired of my family saying I wasn't feeding her enough, so now I have @ least an explanation.

One more question though:

does this disease ever go away?

I mean, is it possible that she might grow out of it one day??

[Nic]

Thank you so much to everyone for your responses! I'm so glad I found this forum because I was completely clueless about this condition and the diet seems so overwhelming but you've given me some real encouragement that it might not be so bad after all!

I went ahead and called the pediatrician to request the blood work be done this week. I've been completely clueless as to why she wasn't gaining and I was really getting tired of my family saying I wasn't feeding her enough, so now I have @ least an explanation.

One more question though:

does this disease ever go away?

I mean, is it possible that she might grow out of it one day??

No, she will never out grow it and it never goes away. There is talk of different medications that are in the works (still not done with trials) that would allow a Celiac to ingest some gluten but I don't believe they are intended to allow the Celiac to eat a gluten filled diet. The gluten free diet is their way of like.

Nicole

[Nantzie]

Unfortunately, you don't grow out of celiac. It's not an allergy, which some kids will grow out of. Celiac is a genetic condition. Basically the gene is either switched on or switched off. Once it's on, there is no way to turn it back off. I'm sure they'll figure out how to do that someday though.

The diet isn't as difficult as you'd expect. There are lots of gluten-free products that my kids love. And there are things that they can eat that everyone else does too - like M&Ms (most are gluten-free), lots of other candy, several different kinds of chips (Cool Ranch Doritos are a favorite around here) , Easy Cheese (not the bacon kind) on gluten-free crackers, and I think both of my kids are made of at least 25% peanut butter.

The learning curve is steep and it seems overwhelming, but this board is the best place to learn everything you need to know.

Nancy