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Celiac Disease And Growth Hormone Deficiency
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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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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!

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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.

http://www.buzzy4shots.com/

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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!

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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!!!

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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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    • Hi Michael, That's quite a spike in blood pressure!  I haven't tested that myself and don't want to if it means I have to eat gluten.  Blood pressure testing to identify food reactions is something that has come up before.  It sounds like it might be possible but I don't know how much study has been done on it.  Probably not much since it is such a simple, straight forward idea. Welcome to the forum!
    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
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