New Parent To Celiac Child- Very Worried

[Erwin Heuck]

My 2 1/2 year old son was "failing to thrive", and was just diagnosed as celiac, based on high level antibodies in bloodstream. We are waiting to get a biopsy done to confirm 100%, and it's killing me to keep feeding him something that may do him permanent harm.

His eating habits have always been poor, and I'm wondering assuming Celiac is confirmed, can anyone comment on following:

- how long for gut to repair itself?

- did increased appetite result from abstaining from gluten?

- how do I know he's getting the Iron/Folic/B12 he needs for developement?

- How agressive should I be with Dr's to ensure he's getting appropriate nourishment/supplement during this critical stage of his developement?

Worried sick in Regina Sask.

[dandelionmom]

- how long for gut to repair itself?

- did increased appetite result from abstaining from gluten?

- how do I know he's getting the Iron/Folic/B12 he needs for developement?

- How agressive should I be with Dr's to ensure he's getting appropriate nourishment/supplement during this critical stage of his developement?

-My daughter had almost instant improvement. She was feeling better within days. But, we're still seeing signs of improvement 6 months down the road!

-She is not hungrier but will eat more of a variety of food than ever before (this has been a gradual change). She is gaining weight (was a size 2T and is now almost grown out of 4s!) because she is now able to absorb her food.

-Gluten is not necessary for a healthy diet. He'll be able to get all the nutrients he needs from fruit, veggies, meats, dairy (but it is best to lay off the dairy while healing), and other grains (rice, corn, buckwheat, etc). Plus, now he'll actually be able to fully absorb the nutrients from his food.

-Honestly, my doctors weren't that helpful when we were starting the gluten-free diet. I had to figure most of it out for myself. I read lots (from this website, other sites, and a couple of great books by Dana Korn) and learned a lot about nutrition and celiac disease on my own.

I know how overwhelming and worrying this is and I'm sorry you're going through all of this right now. The great thing is now you have a diagnosis! And celiac disease is so treatable! Very soon, it won't seem so hard and your child will be feeling so much better.

[LauraWass]

My 2 1/2 year old son was "failing to thrive", and was just diagnosed as celiac, based on high level antibodies in bloodstream. We are waiting to get a biopsy done to confirm 100%, and it's killing me to keep feeding him something that may do him permanent harm.

His eating habits have always been poor, and I'm wondering assuming Celiac is confirmed, can anyone comment on following:

- how long for gut to repair itself?

- did increased appetite result from abstaining from gluten?

- how do I know he's getting the Iron/Folic/B12 he needs for developement?

- How agressive should I be with Dr's to ensure he's getting appropriate nourishment/supplement during this critical stage of his developement?

Worried sick in Regina Sask.

Hi--

Our daughter turned 2 in November and was diagnosed shortly after with celiac disease. My husband and I felt the same way as you--it was killing us to feed her gluten while waiting for the appointment for the biopsy. Luckily we did not have to wait too long. Anyway--just wanted to know that you are not alone--it is very scary and overwhelming at first, but it does get easier.

The gut can start to repair itself very shortly after starting the gluten-free diet and I think it depends on the individual. My daughter starting feeling better about a week after, and now it has been about 4 weeks and she is like a new person. I think that it can take 6 months or longer for things to completely be healed but I am not sure. She goes back to the doc after 3 months for a check up to see how her blood levels are doing.

We saw a huge increase in appetite at first and then it tapered a little--I think she was so excited to not have a tummy ache she was eating everything in sight!

Our doctor set us up with a diatician who was a big help, and both suggested putting Alana on a complete vitamin to ensure that she is getting everything she needs. The diatician pointed out that most cereals, for example, are fortified, but gluten-free cereals are not.

Hope this helps a little. Good luck and hang in there!

Laura

[thepeach80]

Our GI has a nutritionist we can talk to at anytime. I would make use of that if it's offered. I haven't found anything that can't be replaced w/ a gluten free product, it may be a little different, but you have a lot of options.

For Evan, he stopped eating as much when we went gluten free. We think he was eating so much b/c he wasn't absorbing right and now he is (though he does not have an official diagnosis). He's gotten taller too. Yay!

[shan]

My daughter was just over 2 when we biopsied her and she could have fit into her brother 9-12 month clothes!!

Having said that, today she is wearing age 4, not that she is big or fat for her age, but she has a hearty apetite now, and before she ONLY ate cheerios and pasta!! Now she'll eat almost anything i put on her plate (everything but veggies!)

I was also very worried about her vitamins - she didn't get anything for 2 full years!! So i got hold of a gluten free multi vitamin, childrens chewable and that's what she has everyday! In case you want to know, it is the FREEDA vitamins, i don't like the taste of them (had to taste what i give her ) but i made it into a treat and she loves them!!

[ryebaby0]

Hang in there! It will get easier. My son was so sick he ended up in the hospital for 7 weeks -- but now is a very healthy, very normal size 14 yr. old. Something like the 50th for height and 75th for weight, after literally being off the growth charts. He grew about 6.5 inches in the 18 months after dx. He took iron and zinc supplements for about 6 months but just takes a regular multi now. He has other medical issues and is tested regularly for nutrient levels and is always within norms.