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amylopan

Help! Son Was gluten-free For Years And Responding, Now Growth Has Stopped?!

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Hi,

I was wondering if any of you have advice or similar stories to share. My son was diagnosed with celiac when he was 15 months old. He was failing to thrive, which is why he was tested. Luckily, he responded immediately to the gluten-free diet and was soon back on the growth chart. Not big, mind you, but in the 10-20th percentile, which was fine by us!

He is now four, so he's been gluten-free for a while now. We just took him in for a well visit and his height has fallen off the growth chart again. He's only 36.5 inches tall -- about the same height as his two-year-old sister! His weight is fine, so the doc isn't TOO alarmed, but she wants him to be tested for a growth hormone deficiency.

Should we jump to that conclusion or do some celiacs just always have short stature, even if on the diet? Don't get me wrong, we'll still get him tested for hormone problems, but she told me that it costs between $10 to 40k a year for growth hormone treatments.

Good Lord! Can he just move to England and be a jockey? (Just kidding, we'd do it if we had to. :P )

Any thoughts? The more I Google, the more I scare myself about possible "other" diseases my son could have...

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Instead of making yourself crazy with the possibilities, why not have him re-tested for celiac disease? Get a celiac blood panel drawn, if he is still making antibodies, then he is getting gluten somewhere. That would be a good place to start.

I know two children in my small town who did have to have the growth hormone and both did well on it. I believe the state subsidized their care because these families really had nothing.

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My son has not gained any weight for months now. In fact, he has lost a few pounds so I can sympathize. He gained weight quickly in the first year. Now that we are at 19 months gluten free the growth has stopped and he is regressing. I am so worried. When he had his one year follow up test he was not making antibodies. We haven't changed anything in his diet so I'm not sure what is going on.

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I don't have any ideas for ya, but I can sympathize :)

My dd has been gluten free for over 4 years now, and at first she grew and gained quite a bit. She is 7 years old now, for height she has fallen below 3rd pecentile, and for weight she is in the 10th percentile. Our ped mentioned seeing an endocrinologist at some point, but I too have been putting it off. Mainly b/c we really can't afford any extra medical costs, but also b/c she seems so happy and healthy right now I don't want to put her through more testing. I'm short too, I'm 4'10" (but also Celiac) so I don't know how much is genetics, and how muich is due to actual Celiac. It's hard...but good to see others in the same boat!

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I would have him see the endocrinologist and make certain there are no growth hormone problems as well as checking him to see if gluten may be sneaking in. I know from family expereince how devestating it can be for a young man to be abnormally short. My DS had his growth stunted by undiagnosed celiac and as an adult is only barely 5 ft tall. This had a severe impact on his social life and dating, especially in high school. I would have given anything to have been able to help with this and if the endo can give your child the chance of being even a bit higher on the growth charts IMHO it would be well worth the expense. It can make a big difference for him both socially and when the time comes when he is looking for employment.

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I would have him see the endocrinologist and make certain there are no growth hormone problems as well as checking him to see if gluten may be sneaking in. I know from family expereince how devestating it can be for a young man to be abnormally short. My DS had his growth stunted by undiagnosed celiac and as an adult is only barely 5 ft tall. This had a severe impact on his social life and dating, especially in high school. I would have given anything to have been able to help with this and if the endo can give your child the chance of being even a bit higher on the growth charts IMHO it would be well worth the expense. It can make a big difference for him both socially and when the time comes when he is looking for employment.

My son was way short - that's how we first diagnosed the Celiac. After going gluten-free he started growing faster, but not enough to catch up. He is currently on growth hormones, with great results. Had he not, I think he would have ended up around 5 ft or maybe just barely over. The first 2 years of GH he grew 7.5 inches. Now at age 15.5, he is 5'3" and still growing, can likely grow 1-3 more inches. He will never be tall, but he has gone from negative on the height charts now up to 5%, which is actually into the range of normal. It has helped his self-esteem tremendously. As to the expense, GH is terribly expensive, but during a period where our insurance did not cover it, the drug company actually provided it for free.

So I agree with ravenwoodglass, especially for a boy, it is worth investigating.

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Alaskaguy, Like Knitty Kitty I am one of the researchers on this forum.  she has provide you good links. So I wanted to chime in and share some research I found recently that might help you....entitled "Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide." This is recent research too which can be hard to come by to find something directly that might help you. https://www.ncbi.nlm.nih.gov/pubmed/30390734 Also see this thread about
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