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Celiac Disease And Growth Hormone Deficiency

rami

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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!

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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.

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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!

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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