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roomorganizing

Member Since 17 Jan 2013
Offline Last Active Nov 14 2014 09:08 AM
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Posts I've Made

In Topic: Need Advice On Diagnosis

09 October 2014 - 11:01 AM

Kathryne, your dilemma made me think of this thread:   

 

http://www.celiac.co...ac-disease-now/

 

I've read on this forum and through other research that villous atrophy can be caused by other culprits, but with the symptoms you experience I would want to totally rule out the most obvious thing (gluten) first before moving on. I share your pain in getting a definitive diagnosis. You are young and having that knowledge could be very important for any potential future ailments, and certainly if you have or decide to have children. Be your own advocate, read all that you can, and insist on getting answers.....even if that means doing a gluten challenge :( . From what I understand, you are working with a very knowledgeable organization. Maybe it's not out of the question that your doc would give you that diagnosis if you asked specifically? I have been under the impression that villous atrophy means celiac, especially since blood testing can be so touchy. I know there are others here who have much more experience and can address this better. Hang in there kiddo!


In Topic: 14 Year Old Diagnosed By Growth Failure Help Please

25 September 2014 - 01:00 PM

My teen (14) son was diagnosed with growth failure due to celiac. He has gained 20 pounds 3 months on a gluten free diet but hasn't grown height wise yet.

For anyone diagnosed as an early teen can you tell us if it's normal to get a little chubby initially on a gluten free diet. He is unhappy to be short and now unhappy to feel like he is getting fat.

Thank you very much for your help. He'd like to know if anyone else experienced weight gain initially without a height increase.

 

KayJ, so sorry this response is late. My hope is that you revisit your posts to check on new replies.

 

Our oldest son was 16 when we got his diagnosis. As a child, he always measured in the 75-90% range for height and about the same for weight. As he got older, he began to measure out in the 50-75% range for height and 85-100% for weight. We didn't think much of it because our boys were always "husky" like their dad....taller with muscular build, powerful football thighs, heavier than most of their peers. As middle school came to a close, we realized that our son was growing VERY slowly compared to his brother who is 2 years younger and was already 2 inches taller. His freshman year of high school, we noticed that his voice was not changing, nor did we see any peach fuzz on his face. When he turned 16 during his sophomore year, I decided enough was enough. Still no squeaky voice, no peach fuzz, and a height of 5'3" at the doctor's office....that put him in the 10th percentile for height among his peers! I asked our GP to test him for growth hormone deficiency, testosterone levels, anything that might give us some answers. He did, and more. He told me about a speaker he had just gone to hear at our local hospital (Dr. Fasano) and that our son's lack of growth could be due to celiac disease and that he would like to run a celiac test. I had no clue what he was talking about, but didn't care what he tested for at that point if it might offer some clues. 

 

Our son's bloodwork came back with a high tTg which prompted our doc to order an endoscopy which came back positive with blunted villi. I spent hours on the computer reading, and specifically on this forum. I was fascinated! He never had the "classic" symptoms of digestive issues. In a year and a half after going gluten-free, our son grew from 5'3" to 5'9". Today, he is 20-years-old, stands just over 6' and is taller than his brother by an inch. As I have looked back over the years, I have recalled many things that I believe were caused by his celiac disease, such as a pretty severe tic that lasted for a couple weeks when he was five. He still carries a little extra weight, but he definitely slimmed out once he started growing. Try to be careful of the all the gluten-free goodies that are available these days and hopefully he will experience the same slimming as my son did.

 

Happy growing!!