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HaileyH

Growth Delay In Children

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Hello..

My 8 year old son was just diagnosed with Celiac disease, I'm wondering how long it takes for them to start growing again. When he was born he was in the 53rd percentile for his height and weight. When he turned 5 he was down to the 14th percentile for his height and weight. Now he is less than 5th percentile. I became concerned when I was throwing out his old clothes because they were worn, not because he was growing out of them. He is constantly complaining about the kids at his school calling him a midget and other mean names. To top it off his five year old sister is almost the same size as him, people ask me if they are twins, which of course hurts his feelings. I took my concerns to his primary pediatrician, who ordered a wrist x-ray to determine bone age. His bones were saying he was 6 or 7 years old (he's 8.5). So we went to a pediatric endocrinologist, she was trying to chase down a hormonal issue, when his blood work came back positive for celiac disease. It breaks my heart that he is so little. I feel like I tried everything to get him to grow. The horrible part is that I was thinking he just needed more calories, so I was loading him up with cakes, cookies, peanut butter and jelly on wheat. Carnation Instant breakfast added to his milk to boost his calories.. I now realize I was only making him sicker.. Now that I know his diagnosis, I reviewed the symptoms of the disease. He was displaying almost all of them since he was about 1.5.. I just want my guy to start growing again.. :(

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I understand your heartbreak. My son was 8 when he was diagnosed last year. He weighed 41 pounds. He was always by far the smallest in his class. He wore the same clothes when he was in 2nd grade that he wore in kindergarten. He acted like his size didn't bother him but I know it did. He would make comments every now and then about how he wished he could be the same size as his friends. My heart would break. But, I do have happy news! He has been gluten free now for a little over a year and he now weighs 54 pounds! He has grown 3 inches! I had to buy him a new wardrobe, underwear and all! He is still the smallest person in his class but it is not so painfully obvious now. He continues to gain weight and grow taller. This is his motivation to stay strict with his diet. You must be patient. It didn't happen overnight, but it will happen. Good luck!

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I'm always looking for this thread....here's my son's story in a nutshell:

dx at 9, already very small and not slow-growing, more like non-growing

hospitalized , having fallen off the growth chart completely for weight, and in the 5th for height

subsequently put on gluten-free diet PLUS zinc (you have to have it to grow, newly dx kids are often seriously deficient) and iron and a multi

grew about 5 inches the first year of gluten-free life, gained about 40 pounds. Honest. (But he was life-threateningly underweight, so that still was a little less than average weight, all told)

He is now nearly 16. In the 50th percentile for weight, in the 80th percentile for height. He is going to top out at about 5'11" -- shorter than his 6'1" dad and 6'3" brother, but taller than 5"4" me and that's all that matters to a teenage boy :) Do not despair, and be patient! But if he was "programmed" at birth to be average or tall, there's no reason to think that celiac has permanently stopped his growth (and if he is short, well, maybe that's what he was meant to be)

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dx at 9, already very small and not slow-growing, more like non-growing

hospitalized , having fallen off the growth chart completely for weight, and in the 5th for height

subsequently put on gluten-free diet PLUS zinc (you have to have it to grow, newly dx kids are often seriously deficient) and iron and a multi

Hi wondering about the zinc - was this doctor rx'd or did you buy it over the counter? Also, was the zinc in addition to the zinc that was already included in the multi-vitamin? If it was over the counter, what brand, amount etc. Any info on this would be greatly appreciated.

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Good luck to you and your son. I worry about growth too in my almost 7 yr old daughter who just barely made it over 40 lbs and is 6 inches shorter than her sister who is only 1 yr older than her. She has started growing and gaining weight since going gluten free but for us it's still slower than I would like but I keep hoping that it will pick up.

HUGS!

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Ryebaby, actually celiac disease has been shown to be a reason why kids aren't as tall as they were expected to be. Early diagnosis is key, so Hailey your son should be ok.

I too had an underweight, non-growing boy. Up until he was 12 he was 75%tile for height, 50%tile for weight. Last year prior to gluten-free, hewas 15, no signs of puberty, had a bone age of 12.5. His bloodwork was normal and the docs blew off my celiac concerns. The GI said the tummy problems were from lactose. DS had been 95-98 pounds for TWO years - no weight gain.

DS decided to go gluten-free/CF in March of last year. He also did a lot of research and found a study that said that delayed growth could be reversed with Vitamin A and D supplementation just as well as growth hormones.

He started taking Carlson's cod liver oil (they have capsules -no taste at all), a multi-vit w/ 15mg (100% RDA) of zinc and sublingual B12.

After 6 mos. gluten-free he entered puberty and is growing. He still is underweight (105 pounds at 5'8") but is happy that he's taller than his sister now.

I can't find a link to the study about supplementing and growth but here are some that show that early celiac disease diagnosis allows most kids to catch up. If you want me to look for the other study about vitamins let me know.

http://www.ncbi.nlm.nih.gov/pubmed/1193868...ogdbfrom=pubmed

http://www.ncbi.nlm.nih.gov/pubmed/1855771...Pubmed_RVDocSum

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My son took a prescription zinc liquid (it was pink, and tasted "not bad") as well as an ordinary multi (gluten-free of course, but it was just some regular multi, I can't remember if it had zinc or not but if it were as easy as that, I imagine he wouldn't have been on straight zinc too). He was on the zinc for the 3 months he was hospitalized, plus the 6 months after. Now he just chews VitaBalls and eats almonds (he's magnesium deficient, for other reasons)

Dosage would vary considerably based on weight, and I don't recall what it was. Your doctor ought to be able to help you with this. And as with all things, each patient is different. My husband was dx AFTER my son, and was 40 years old and 6'1". You just can never tell...

joanna

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Hi there,

My son is eight and has just been diagnosed. When I read your story I thought it was ours!

He is teeny tiny and weighs 40 lbs. His 5 year old bro is almost as tall and he is tiny too.

I'm so hoping that Gluten-free helps all of the family (I have three tiny sons!) but it's only week three so too early to tell.

Thanks to others for their success stories.

S

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My son is 14 months old. He is in the negative percentiles for height weight and head growth. At 2months he was in the 50% and quickly dropped from there. He has only gained a lb since he was nine months old-and that was only since he started the gluten free diet.

He hasnt grown at all, and they said that if he doesnt start growing, they may consider giving him Human Growth Hormone to get him to start growing=(.

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We just got back from the pediatrician's office.....Emma (3 years old) has grown a full inch since May!!

She went gluten free in January; subsequently gained nearly two pounds in 5 months (that was about 10% of her starting weight at the time). Unfortunately today we were told she has now lost about 1/3 of a pound since the May visit, but we think that's due to the throat surgery she had at the end of August....her appetite was suppressed during recovery because it hurt to swallow.

Hopefully she will catch up on the weight before her next doctor visit!

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