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Debra Baum

Short Stature Only Symptom

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My 6 year old son was just diagnosed with celiac. He has always hated eating and has always been very small but never complaining of stomach aches, always normal bowel movements... He was 6 in February and is now smaller then my 4 year old daughter. He is by far the smallest in his class. We are starting the gluten free diet this week and although it will be a very hard change because he hardly eats anything anyway, I'm looking forward to him hopefully thriving. Does anyone have a situation like this? He had a bone age done and it came back that he was the size of a 4 1/2 year old. The Dr. said this was good because he has lots of room to grow and catch up. What if this diet does not work? Will he need growth hormones? SO confused. Would LOVE any advice or similar situations.

Debra

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We are going through the same thing with our daughter. She is 12, but is smaller than 7 year olds we know. She has never even made it onto the growth chart. We have a long-awaited appointment with an endocrinologist this week. Her bone age showed age 10 (23 months below - far outside the standard deviation) - also the same good sign you got!

We've run all sorts of blood tests and most came back normal. We did the genetic screening for celiac and it's negative (99% sure brother has it, that's why we checked her).

She has also always been an EXTREMELY picky eater. She's had phase after phase where she'll only eat one food for months, then suddenly hate it. When she was 4 she decided to be vegetarian (dad was vegan, so she had support). We knew how to do vegetarianism with complete proteins, but she just turned into a sugar fiend!!!

Once we started GAPS she started eating nearly everything offered her! She eats about 10 times as much as she used to. She used to take one small bite and swish it around in her mouth with disgust for minutes at a time, and maybe take one or two more. Now she eats whole meals without problems. I'm pretty sure she's grown in the past few months - she seems more substantial. We'll see the numbers at her dr visit on wednesday, and see what they have to say.

I don't think she has celiac, but I do think she has benefited greatly from GAPS and being completely grain free. Her Tourette's is much better now, too.


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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Yes it is quite possible that you will see a significant increase in growth at that age. I have a freind whose nephew was diagnosed at about age 7 and he was very tiny for his age. He grew a number of inches the first year and as an adult is now about 6 feet. In my own family diagnosis didn't come until my son was almost 20 so for us the diet was too late.

As far as growth hormones go, if he doesn't catch up a bit after a year or so ask for a referral to an endocrinologist to check if those would be advised.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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You've still got lots of time for growing. Like Ravenwoodglass said, after you've given the gluten free diet a good try and IF you haven't seen some decent results, there is still plenty of time to pursue growth hormones if you want. In the meantime, ask his grandmother what his dad's growth curve looked like. My husband's family all ran a little small and really skinny until they got close to puberty. As adults, none of them are giants (the guys all average around 5' 9" or so). Based on my son's growth curve, at the moment, he looks like he's going to be about 5' 5" as an adult . . . but he's been gaining ground in the last two years (like his father and uncles did) so I'm not too worried.

You may find that after your son goes gluten free he won't be as picky of an eater. He may have learned that when he eats, it hurts . . . so he doesn't. Before my daughter went gluten free, there were foods that she absolutely refused to eat. Who refuses pizza??? Now pizza is one of her favorites.


Janet

Experience is what you get when you didn't get what you wanted.

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My son was diagnosed in November at age 8 as Gluten and Dairy intolerant. He was one of the smallest in his class and ate like a bird. Since removing Gluten and Dairy, he has experienced his highest growth rate since he was born and eats like a Trojan! Hurray! Don't panic. It's truly amazing what happens to them when you remove the poison from their system.

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My son was extremely small for his age. Short stature was almost his only symptom that prompted me to have him tested for Celiac, and he was confirmed positive (blood test followed by endoscope) when he was 10. It took awhile to get his bloodwork negative. His growth rate did improve, but he was so far behind, and the improved rate was still at the low end of normal - no catch up growth. After enough time for that to be evident, we did go the growth hormone route, and it was quite successful. Without it, his expected adult height was about 5 ft. He is now 5'5" and nearing the end, might stretch out another inch or two, or maybe not. But it has helped his self-esteem so much just to be in the ballpark of normal, instead of being a full head shorter than everyone in his class. I can give you more detail if you like.

As someone else posted, your son is younger, so you have time on your side. If he grows well just with the gluten-free diet, that would be much simpler (and cheaper)!

Good luck!


Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

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How fantastic that you found out so early in his life!

I am 32 and only found out 8 months ago. I am six inches shorter than my next-shortest sibling.

What I did want to tell you is that during college I went through a period where I couldn't afford to eat much, and I ate mainly rice and frozen vegetables. I wan't totally gluten free but almost, just by accident. I grew TWO inches! After I was 19 years old!

I don't think I reached my full potential, but I wasn't diagnosed until I was an adult.

Your son has twelve years (at least) of time to catch up. I'm sure he will grow to his potential or very near it.

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