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


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5 replies to this topic

#1 amylopan

 
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Posted 05 October 2009 - 06:17 PM

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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#2 ang1e0251

 
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Posted 06 October 2009 - 12:48 PM

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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#3 Amyleigh0007

 
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Posted 08 October 2009 - 04:56 PM

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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Amy

1989: I am diagnosed with IBS.
3/08: 8-year-old son diagnosed with Celiac (blood test and biopsy) and allergies to corn, egg whites, soy, peanuts, walnuts, wheat, and clam.
6/08: My Celiac test is negative.
7/08: I go completely gluten free despite negative test and NO MORE IBS SYMPTOMS!!
7/09: My Enterolab gluten sensitivity gene testing results indicate I have one Celiac gene and one gluten sensitivity gene.
8/09: I am diagnosed with Celiac based on gene testing results and positive response to diet.

#4 taweavmo3

 
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Posted 09 October 2009 - 06:30 AM

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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Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis
Age 8- dx'd Celiac March 2005
Age 6- gluten-free/cf, allergy related seizures
Age 4 - reflux, resolved with gluten-free/cf

#5 ravenwoodglass

 
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Posted 09 October 2009 - 07:03 AM

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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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#6 bbuster

 
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Posted 12 October 2009 - 11:50 AM

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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Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005




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