Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Growth Issues

tfrankenberger

Recommended Posts

tfrankenberger Apprentice
tfrankenberger
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyberprof Enthusiast
cyberprof
Posted

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!

  • 1 month later...
zelda Newbie
zelda
Posted

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.

  • 3 weeks later...
Matt'smom27 Newbie
Matt'smom27
Posted

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 Proficient
mushroom
Posted

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 Newbie
Matt'smom27
Posted

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 Newbie
JoannaIvey
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted

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 Newbie
Matt'smom27
Posted

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 Newbie
JoannaIvey
Posted

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 Newbie
Officersbride
Posted

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 Community Regular
frieze
Posted

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 Newbie
Matt'smom27
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.