• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help! Son Was gluten-free For Years And Responding, Now Growth Has Stopped?!
0

6 posts in this topic

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...

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0