Growth Issues

[tfrankenberger]

Anyone have a doctor want to do a growth hormone defficiency test? This is a three hour test where they stimulate the pituitary gland and see if you're producing the growth hormone.

My son has fallen underneath his growth curve. He's always been small (5th percentile). Since diagnosis last year of Celiac he has fallen to below all percentiles. I feel he has shown significant improvements in the last three months. Just did a bone age scan...waiting on results. He is in early puberty even though he's 15. His doctors say he should continue growing long past his peers since he was delayed in onset of puberty, etc.

Just wondering how many of you have dealt with this....tired of tests and want to wait and see....but don't want to ignore doctors completely.

[cyberprof]

Anyone have a doctor want to do a growth hormone defficiency test? This is a three hour test where they stimulate the pituitary gland and see if you're producing the growth hormone.

My son has fallen underneath his growth curve. He's always been small (5th percentile). Since diagnosis last year of Celiac he has fallen to below all percentiles. I feel he has shown significant improvements in the last three months. Just did a bone age scan...waiting on results. He is in early puberty even though he's 15. His doctors say he should continue growing long past his peers since he was delayed in onset of puberty, etc.

Just wondering how many of you have dealt with this....tired of tests and want to wait and see....but don't want to ignore doctors completely.

That's good that the doc is checking for you. My story may or may not help you but I've been meaning to post an update. When my son was 15 and was not in puberty I was worried. His bone scan showed an age of 12. The blood test was negative for celiac and my DH nixed the endoscopy. The docs concluded that he likely wasn't celiac and said "Maybe he'll just be short like his mom". I'm 5'3" and my husband is 6'1". My dad and two brothers are over 6'. I was so annoyed at the docs so I had my son's genes tested and he agreed to go dairy-free, gluten-free. He was 5'4" 96 pounds then and is now 5'11" at age 16.5 so he's grown seven inches in the 1.5 years that he is gluten-free/DF, but it was about a year before he started to see inches. Puberty happened within 6 months. Maybe he would have grown and gone into puberty without going gluten-free/DF but I wasn't willing to wait and we had nothing to lose.

Your son may shoot up here in a bit, now that he's been gluten-free for a year.

The bone scan should help and if his bone age is delayed it will give him time to catch up.

You might also supplement with Vitamins A and D...I read a study where researchers compared growth hormones to vitamin supplements in boys and the vitamins were just as effective as hormones.

Good luck!

[zelda]

I can really relate to your story. My son will be 15 in a couple of weeks and was diagnosed with celiac disease in June 2009 by the endocrinologist we took him to see because of growth and puberty delay. He was in the .5th percentile (yes that does say POINT 5) for height and weight both. His bone age was found to be delayed by 1 1/2 to 2 years which I guess is a good thing because it gives him more time. He had normal thyroid and growth hormone levels. Biopsy positive for celiac. He was last seen in November and at that time his tissue transglutaminase level was back within normal range. He has probably grown about 3 inches since he was diagnosed but I don't know his percentile - probably not much different yet. He has done very well switching to the gluten free diet at an age when it is very difficult to feel "different". It is very helpful to read about other people with similar stories because we personally don't know many other people dealing with this disease. Hope everything turns out well for your son.

[Matt'smom27]

Hi, I'm new to this board. My son was diagnosed with celiac in June 2009. He was recenltly put on growth hormone treatments due to failing the growth stimulation test as well. He was 4'6, 12 yrs when diagnosed with celiac. He has somewhat started puberty. He is 4'10 now since started diet and shots. He's doing real well so far. He is a devoted athlete, and I'm worried about how all of this is gonna affect his goals with wanting to play baseball through high school

and college. No one else has cealic in the family. He started to bruise all over his legs and thigh areas. We took him for blood work, it showed a low platelet count. Has anyone experienced anything like that? He also has a high esophil count, which seemed very bizarre to the docs.

[mushroom]

Hi, I'm new to this board. My son was diagnosed with celiac in June 2009. He was recenltly put on growth hormone treatments due to failing the growth stimulation test as well. He was 4'6, 12 yrs when diagnosed with celiac. He has somewhat started puberty. He is 4'10 now since started diet and shots. He's doing real well so far. He is a devoted athlete, and I'm worried about how all of this is gonna affect his goals with wanting to play baseball through high school

and college. No one else has cealic in the family. He started to bruise all over his legs and thigh areas. We took him for blood work, it showed a low platelet count. Has anyone experienced anything like that? He also has a high esophil count, which seemed very bizarre to the docs.

Have they checked all his vitamin and mineral levels? because sometimes that bruising indicates deficiencies. I used to get it all over my hands and forearms before my testing and supplementation program.

[Matt'smom27]

Have they checked all his vitamin and mineral levels? because sometimes that bruising indicates deficiencies. I used to get it all over my hands and forearms before my testing and supplementation program.

Yes they have. He has low Vitamin D...which is somewhat strange because we live in Florida and we are middle-eastern as well. We go back in 4 weeks to see if there is a change, if not I guess we will be off to a Hematologist next.

[JoannaIvey]

So interesting to see this group of posts. My 9yo was diagnosed with gluten intolerance when he was 5. Before then we was never on a growth chart- way off the bottom. He started growth hormone injections when he was 2.5 years. We stopped when we cut gluten out, and lo and behold he grew. After three years gluten-free we tried to re-introduce guten to see if he "grew out of it", and he stopped growing completely for 9 months. His endo did a celiac panel, which was negative, but when we cut gluten out again... he grew. Interestingly though, when he was eating gluten he went into early puberty (at 8!). This stopped when we stopped gluten.

He was diagnosed by a DO where we used to live when he was 5. I've forgotten what test he did. Can anyone tell me why the celiac pannel was neg, but he is so clearly gluten intollerant? What test should I be requesting? His endo is supportive but doesn't know much more than we do.

Thanks- Joanna

[Wolicki]

Children's blood tests are notoriously wrong. They're just not reliable. Or he could be non celiac gluten intolerant. That will never show up on a blood test, but it still causes lots of problems.

[Matt'smom27]

So interesting to see this group of posts. My 9yo was diagnosed with gluten intolerance when he was 5. Before then we was never on a growth chart- way off the bottom. He started growth hormone injections when he was 2.5 years. We stopped when we cut gluten out, and lo and behold he grew. After three years gluten-free we tried to re-introduce guten to see if he "grew out of it", and he stopped growing completely for 9 months. His endo did a celiac panel, which was negative, but when we cut gluten out again... he grew. Interestingly though, when he was eating gluten he went into early puberty (at 8!). This stopped when we stopped gluten.

He was diagnosed by a DO where we used to live when he was 5. I've forgotten what test he did. Can anyone tell me why the celiac pannel was neg, but he is so clearly gluten intollerant? What test should I be requesting? His endo is supportive but doesn't know much more than we do.

Thanks- Joanna

My son never had any symptoms. My husband and I were sick of him being at the 5th percentile and not budging. The pediatrician over looked it as he always did. We took him to Nemours Endocrinology ourselves. I have heard that some children out grow gluten intolerance. I thought the blood work was a reliable test? I tested my 2 other daughters and they were negative. I was tested as well...nothing.

I have no idea where it came from. My husband has juvenile onset diabetes type one, but doesn't have celiac. Where is your son on the growth chart now?

[JoannaIvey]

Where is your son on the growth chart now?

He grew to the 45%, then when we did a gluten trial he dropped to the 25%. Weight is 10%. We are back on the gluten-free diet and hope he is growing. His feet are smaller than our 5yo- and he is 9yo.

I guess we will have to wait and see. His psych wants him to gain wieght or we have to change his meds- he eats more than a grown man, so I don't know what to do. Meanwhile the rest of the family (ME especially!) is getting fat since I add cheese and butter to everything.

[Officersbride]

I am curious about growth as well...I posted another thread about my 3 year old having symptoms... her serum IgA was negative. (The pedi didn't draw anything else so I don't feel like it gave us much information.) We may be asking for endo consult.

I'm afraid to put her on a gluten-free diet without doing more testing....if I see a significant difference, I don't know that I could do a gluten trial in order to do the testing. My DD has been 25th percentile for weight/height until her 3 year checkup, when she dropped to 10th for weight (staying at 27 lbs for at least 6 months now despite eating well), and 3rd percentile for height.

She has other symptoms of celiac disease, but pedi isn't convinced b/c she doesn't have diarrhea. But if celiac disease is keeping her from growing, I wonder how quickly I would see results from the gluten-free diet??

[frieze]

Hi, I'm new to this board. My son was diagnosed with celiac in June 2009. He was recenltly put on growth hormone treatments due to failing the growth stimulation test as well. He was 4'6, 12 yrs when diagnosed with celiac. He has somewhat started puberty. He is 4'10 now since started diet and shots. He's doing real well so far. He is a devoted athlete, and I'm worried about how all of this is gonna affect his goals with wanting to play baseball through high school

and college. No one else has cealic in the family. He started to bruise all over his legs and thigh areas. We took him for blood work, it showed a low platelet count. Has anyone experienced anything like that? He also has a high esophil count, which seemed very bizarre to the docs.

if you are referring to eosinophils....that would inicate an allergy...

[Matt'smom27]

if you are referring to eosinophils....that would inicate an allergy...

yeah I guess I misspelled it.

I know it's an allergy. They are high in his esophagus as well in blood work. He is going for a skin allergy test in August.