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CeliacBoys

Gluten-free And Not Growing

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My 12 yr old son has been gluten-free (blood tests all negative over the last two yrs) but still fails to

adequately grow. He growth is much the same as when he was suffering from Celiac Disease.

I read these stories of 4 - 8" of growth in other children once their gluten-free.

His fatigue is zero and energy is tripled BUT I WANT TO SEE HIM GROW. When should

I get more aggressive with the doctors.

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sounds like his growth has nothing to do with his celiac------maybe he is just going to be small? have they checked his growth hormone levels?


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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So far the Ped. Gasto. Spec. isn't eager to pursue a visit with an Endo doc. Feels there's not enough issues to go in that direction.

However - getting his levels checked would give me piece of mine.

He's always be at the 5th percentile since birth. I do think he is a naturally a small build.

We never had an answer to his poor growth until 2 years ago. I had hoped correcting his diet would get growth results.

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My son is only 3 years old and has been gluten free for 2 years this May, but he is still very small. He doesn't look emaciated, but he isn't even on the charts for height I bet. He looks like he is two years old. He is so much different and thriving gluten free, but just growing very slowly. My other two kids are in the 25th percentile and not that big. He has been tested for everything, but nothing. I don't know what to tell you, but I would make sure that he is 100% gluten free (we are, but he is still small) and then get an appointment with an endocrinologist and see what they think.

Monica

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Is he maintaining growth on the fifth percentile? I think if he is growing slowly but surely and maintaining his growth curve, that's certainly better than dropping off. My son did not have a miraculous growth spurt either. He went from below third percentile of weight to the third, and he's maintained that for the year and few months he's been on the diet. In 18 months he's gained approximately 7lbs and grown about 2 - 2.5 inches. Not the huge spurts we hear about.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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Here are a couple of thoughts based on my 6-year-old son's experience:

1. Ian was originally on the height curves between 50 and 75%, then he dropped below the 25% around age 4. Is your son still following the same curve, or has it changed?

2. Ian was also tested (via an x-ray of his hand) for constitutional growth delay. At the time of the test he was 4 yrs. 10 mos. old, and his growth plates indicated a "bone age" of not quite 3 yrs old. He experienced a 2" growth spurt in his first 6 months gluten-free. He grew mostly because he was finally getting enought nutrition and calories to do so.

3. At Ian's age, he should've been growing around 3 inches per year, yet he was only growing <1/4". How much growth is expected in a healthy 12 year old male? Maybe his body is healing on the inside in preparation for rapid growth during puberty. If he is experience constitutional growth delay, he might be one of those kids who continues to grow after his peers have stopped.

I hope this helps.

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My 12 yr old son has been gluten-free (blood tests all negative over the last two yrs) but still fails to

adequately grow. He growth is much the same as when he was suffering from Celiac Disease.

I read these stories of 4 - 8" of growth in other children once their gluten-free.

His fatigue is zero and energy is tripled BUT I WANT TO SEE HIM GROW. When should

I get more aggressive with the doctors.

I don't have an answer for you but I am in almost the exact same situation with my son. We completed diagnosis with positive blood tests and GI scope in early 2005. It took until last summer (testing at 6 month intervals) to get negative bloodwork -- went from stong positive to weak positive to equivocal to negative.

He has not been to the doctor since last summer, but he is below 3rd percentile and has been for most of his life, even though I am 5'6" and his dad is 5'10". Last July he was 4'5" and have not measured lately but he is around 4'6" now and will be 13 in May. I can say that he has filled out a fair amount since going gluten-free but not gained much in height.

We have had growth hormone levels checked three times (once after the Celiac diagnosis) and they were always normal. He has not really started puberty yet and is about a head shorter than most of his classmates, most of whom are over 5'.

Next checkup (in a couple of months) I plan to ask about using growth hormones and see what the Dr. says. Since the diagnosis and the diet change I keep thinking he will spurt up any time now, but it just is not happening and is frustrating to all of us, especially being a boy and wanting to play sports and such. Like you, his energy level is great and he feels fine, but is just bummed that he is so small.

I wish you well and will follow this topic looking for the same answers myself!


Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

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Is he maintaining growth on the fifth percentile? I think if he is growing slowly but surely and maintaining his growth curve, that's certainly better than dropping off. My son did not have a miraculous growth spurt either. He went from below third percentile of weight to the third, and he's maintained that for the year and few months he's been on the diet. In 18 months he's gained approximately 7lbs and grown about 2 - 2.5 inches. Not the huge spurts we hear about.

Yes, he is maintaining the 5th percentile. 2" every yr. Tony turned 12 in Dec. and I found out over the internet that the "average" ht. for a 12yr old boys is 4'11"

He's 4'9" I quess I should relax. I've planned out his curve and at 18 he'll be 5'9" at this rate. I'm one of those mom's that wants a miracle once a dx has been found. Especially when his friends come over and they're taller than me. His wt. was went from 72 to 75lbs in 18 months - but he is so much more active "burning calories".

I'm devoted to his gluten free meals and hopefully my extra efforts will pay off some day.

Thanks for your comments and maybe we'll both be suprise one of these days.

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I don't have an answer for you but I am in almost the exact same situation with my son. We completed diagnosis with positive blood tests and GI scope in early 2005. It took until last summer (testing at 6 month intervals) to get negative bloodwork -- went from stong positive to weak positive to equivocal to negative.

He has not been to the doctor since last summer, but he is below 3rd percentile and has been for most of his life, even though I am 5'6" and his dad is 5'10". Last July he was 4'5" and have not measured lately but he is around 4'6" now and will be 13 in May. I can say that he has filled out a fair amount since going gluten-free but not gained much in height.

We have had growth hormone levels checked three times (once after the Celiac diagnosis) and they were always normal. He has not really started puberty yet and is about a head shorter than most of his classmates, most of whom are over 5'.

Next checkup (in a couple of months) I plan to ask about using growth hormones and see what the Dr. says. Since the diagnosis and the diet change I keep thinking he will spurt up any time now, but it just is not happening and is frustrating to all of us, especially being a boy and wanting to play sports and such. Like you, his energy level is great and he feels fine, but is just bummed that he is so small.

I wish you well and will follow this topic looking for the same answers myself!

Thanks, your history is very much the same. I'm 5'7", hubby is 5"10" (grandparents MUCH shorter). Tony is 4'9" (turned 12 in Dec.) all of his friends are much taller.

Please let me know how things go.

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Here are a couple of thoughts based on my 6-year-old son's experience:

1. Ian was originally on the height curves between 50 and 75%, then he dropped below the 25% around age 4. Is your son still following the same curve, or has it changed?

2. Ian was also tested (via an x-ray of his hand) for constitutional growth delay. At the time of the test he was 4 yrs. 10 mos. old, and his growth plates indicated a "bone age" of not quite 3 yrs old. He experienced a 2" growth spurt in his first 6 months gluten-free. He grew mostly because he was finally getting enought nutrition and calories to do so.

3. At Ian's age, he should've been growing around 3 inches per year, yet he was only growing <1/4". How much growth is expected in a healthy 12 year old male? Maybe his body is healing on the inside in preparation for rapid growth during puberty. If he is experience constitutional growth delay, he might be one of those kids who continues to grow after his peers have stopped.

I hope this helps.

His curve is exactly the same, 5th pertentile. I did find on the internet the "average ht of a 12 yr boy is 4'11" Tony is 4'9" (his brother, also +Celiac) is 9yr old 95lbs and also 4'9" Even with Celiac (+biopsy in Feb 2006) Nick is in the 95th pertentile for growth, figure that out? I think that why I'm SO anxious for Tony to grow.

Your right, I'm hoping that he is the kid that grows well into his 30s. We all know guys that come back to the class reunion and they finally filled out.

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