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

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Hmart
      - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is this celiac?

      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 1...
    2. knitty kitty
      - knitty kitty replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

      @Trish G, I like dates, they have lots if fiber as well. But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small...
    3. knitty kitty
      - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines. Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured...
    4. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement. Thanks again
    5. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      If you were wondering why milk protein bothers you with Celiac Disease. Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,345
    • Most Online (within 30 mins)
      7,748
    rolland mcclay
    Newest Member
    rolland mcclay
    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

    • Hmart
      Is this celiac?

      By Hmart · Posted

      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      Fiber Supplement

      By knitty kitty · Posted

      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      ttg iga high (646 mg/dl) other results are normal

      By knitty kitty · Posted

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
×
×
  • 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.