Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac Disease And Growth Hormone Deficiency

rami

Recommended Posts

rami Apprentice
rami
Posted

I'm sure many of you might know my story, but thought I would post it again just in case. About a year ago my 8.5 year old son was referred to a pediactric endocrinologist because of short stature. Since about age 4 he has not not followed his growth curve and eventually fell off of the charts. His only symptom was short stature, but the endocrinologist ran numerous blood tests to determine if he had an underlying cause and after blood work and a biopsy he was dx with celiac by a gastroenterologist in August. He has been on a gluten free diet since but because his only symptom is short stature we cannot be sure how well he is responding to the diet as we don't have a follow-up with the gastroenterologit until February. In the mean time he has been followed by his endocrinologist. He had a visit last month in which he only grew 1/2" over a three month time period so the endocrinologist recommended that we conduct a stimulation test to determine if he is making growth hormone. My husband and I were on the fence about it, not sure if we were being impatient about his growth since he had only been gluten-free for three months at the time, but we decided to rule it out! The test was performed about three weeks ago and lo' and behold, he is not making enough growth hormone. The endocrinologist classified his deficiency as moderate and told us that without growth hormone shots he would never reach his potential height and could suffer other health implications despite being on a gluten-free diet. He still has to undergo testing for other hormone levels to determine if we have to add anything more as well as an MRI to rule out a pituitary tumor, but once that is done (and hopefully all negative) the endo wants him to start the growth hormone shots. Have any of you had experience with this? Did you child respond to the shots, were there side effects? Did they reach their potential height? Does anyone know if there is a link between celiac and growth hormone deficiency? I asked the endo and he said no, but I'm finding it hard to believe one kid could have so many issues without a unified link (he also has asthma, allergies, and ADD)! I am beside myself because now we have another condition to address, but also thankful that we have identified these issues!

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

Celiac.com Sponsor (A8-M):


kvanrens1 Explorer
kvanrens1
Posted

Our daughter, age 9, has been on growth hormone treatment for a year and a half. She had the stimulation test too and her levels (peak) were at 3.8 when normal was 10. She was too underweight to start growth hormone treatment which set us on the GI roller coaster. Our daughter's celiac tests (incomplete blood panel several years ago and biopsy) were negative but we put her on a gluten-free diet in March of this year. She has grown 4-5 inches on the treatment and with the gluten-free diet.

There is a link between growth hormone defeincy and celiac disease. I will try to find the link for you.

We have adjusted to the shots and it is part of the night time routine. We got our daughter a buzzy bee (uses vibration and cold pack) on the injection site and she says they don't really hurt that bad. Given her fear of needles, I was really worried about starting the shots but she is my hero!

kvanrens1 Explorer
kvanrens1
Posted

Here is the link for article about growth hormone deficiency...

https://www.celiac.com/articles/899/1/Growth-Hormone-Deficiency-Found-in-Children-with-Celiac-Disease/Page1.html

kvanrens1 Explorer
kvanrens1
Posted

Here is the link for the buzzy. She always had such a fear of needles that the thought of daily injections just about did us both in. She says this really helps her.

Open Original Shared Link

rami Apprentice
rami
Posted
  • Author

Our daughter, age 9, has been on growth hormone treatment for a year and a half. She had the stimulation test too and her levels (peak) were at 3.8 when normal was 10. She was too underweight to start growth hormone treatment which set us on the GI roller coaster. Our daughter's celiac tests (incomplete blood panel several years ago and biopsy) were negative but we put her on a gluten-free diet in March of this year. She has grown 4-5 inches on the treatment and with the gluten-free diet.

There is a link between growth hormone defeincy and celiac disease. I will try to find the link for you.

We have adjusted to the shots and it is part of the night time routine. We got our daughter a buzzy bee (uses vibration and cold pack) on the injection site and she says they don't really hurt that bad. Given her fear of needles, I was really worried about starting the shots but she is my hero!

Thank you so much for the information. My husband and I are feeling overwhelmed by all of this. We had just gotten used to the idea of celiac, so now we have to adjust to the new diagnosis. I am thankful that we know what is going on, but a little stressed by all of it as well. I will definitely be ordering the buzzy because he absolutely hates shots and works himself into a tizzy just thinking about it! Thanks again!

kvanrens1 Explorer
kvanrens1
Posted

I completely understand. When the nurse showed up at our house for the training, my daughter just lost it and fell to the floor crying. I felt so bad for her. I would not have believed a year and a half ago that the daily shot would not be a big deal but it really isn't. She's my hero :)

Good luck!!!

  • 2 months later...
nicolebeth Apprentice
nicolebeth
Posted

Thank you for this thread. Since taking our son gluten-free in October, he hasn't grown (well, he's still under the 5th percentile for height and weight, growing at the bare minimum to maintain that). His older sibling at least has never shown these issues. Our son is starting to get upset about this. He feels better gluten-free, and I don't think will stray, but it's starting to get to him to be the smallest (not just the smallest in 2nd, but smaller than most of the 1st graders as well). I will read over that link re: the celiac connection. Again, thanks!

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      127,542
    • Most Online (within 30 mins)
      7,748
    Debra scott
    Newest Member
    Debra scott
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • ALBANICKAP
      Celiac, Fructose and Lactose

      By ALBANICKAP · Posted

      Thank you Scott, I will try what u suggested. 
    • pplewis3d
      Citracal Petite supplements

      By pplewis3d · Posted

      Does anyone know if Citracal Petites supplements for Calcium and Vitamin D3 are gluten free?
    • Sergiu2020
      Augmentin (amoxicillin) syrup

      By Sergiu2020 · Posted

      Good point. I will go to the pharmacy to ask who is the provider of this Augmentin and i'll contact them. The problem is i need to know about it very fast cuz i am already delaying the antibiotics administration. My little girl is not afraid of injections but i cannot say she likes them. It's normal. We did choose the syrup solutions because it was the easiest. Of course where there are flavors added...the mighty gluten may be present or not. Thanks a lot for your time and for the reply! 👏
    • trents
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By trents · Posted

      You can always just double up or triple up on whatever gluten free chewable multivitamin product you may already be using. That should cover the bases. Celiacs need the same vitamins and minerals as non celiacs, just in higher doses to compensate for less efficient absorption. Are you wanting to boost any particular vitamins or minerals? I seriously doubt you will find a vitamin product specifically designed for celiac kids. There just isn't a big enough market for such a product to provide the incentive for a company to invest in such a product line.
    • knitty kitty
      Enegy level extremely low

      By knitty kitty · Posted

      Hi, @Sicilygirl, I had lost a great amount of weight, felt depressed, and had no appetite early on.  I found that taking Thiamine in the form Benfotiamine extremely helpful.   Doctors routinely check B12 and Vitamin D, but they fail to test for deficiencies in other B vitamins like Thiamine, because blood tests for other vitamins are not accurate measures of deficiencies.   Low Thiamine can result in depression, anxiety, unintentional weight loss, loss of appetite, and  emotional lability (quickly changing emotions and moods), and gastrointestinal symptoms (gastrointestinal Beriberi).  These symptoms of low thiamine can be easily brushed aside and contributed to other things.  The best way to tell if one is low in thiamine us to take it and look for health improvement.  Thiamine is safe and nontoxic even in high doses.  No harm, no foul for trying it.   I took a B 50 Complex along with 300 mg Benfotiamine twice a day with the first two meals of the day.  A one a day multivitamin does not provide sufficient amounts to overcome the  malabsorption of celiac disease and correct low vitamin levels stored inside cells.  The eight B vitamins are water soluble, so any extra or unabsorbed is easily excreted in urine.  The eight B vitamins work together.  Thiamine interacts with each of the other B vitamins.  If there's not sufficient thiamine, the other B vitamins are not utilized and not stored inside cells.  Thiamine is needed for iron absorption.  Thiamine is needed to activate Vitamin D. We need more Thiamine when we are physically stressed by illness, emotionally stressed, and physically active.  Coping with Celiac covers all three.  Thiamine stored inside cells can become depleted within three days to three weeks.  Symptoms can change depending on how much thiamine is absorbed from your diet.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain activity, so symptoms can wax and wane mysteriously.  The brain just thinking can use as much thiamine as leg muscles use running a marathon.  Mitochondria become sick and die without sufficient Thiamine.     Doctors aren't required to take many nutrition courses in their training period.  (Twenty hours of nutrition education out of seven years at medical schools funded by pharmaceutical companies.  Vitamins cannot be patented, so doctors cannot make money by prescribing vitamins like they make money by prescribing pharmaceutical drugs.).    I started feeling better within a very short period of time after taking Benfotiamine and a B Complex.  I also took magnesium, because thiamine and magnesium make life sustaining enzymes together.   Giving the body the vitamins and minerals it needs to function will increase your health.
×
×
  • Create New...