Could Celiac Disease Be the Reason My Daughter is Not Growing?

We’ve been told since my daughter was little, that she was “small” (she’s 8 1/2 years old now). Since my grandmother was 4 feet, 11 inches and both my mother and my husband’s mother are both 5 feet, 2 inches — we weren’t too surprised. We were asked repeatedly over the years by our pediatricians if we wanted to do the growth hormone and we declined.

 

Both my husband and I were in agreement, we didn’t want to put her through shots.

If she was going to be height-challenged, we’d make sure she had fabulous heels and knew how to speak up for herself.

But something showed up on her 8 year checkup that threw us for a loop. She had bloodwork done and her doctor called me after he got the results. My daughter was deficient in her IGA Antibody (I hope I am saying that correctly). Which meant she could have Celiac Disease and that’s why she hasn’t been growing like she should. Which was mind-blowing, because we had always just assumed she was going to be short because of genetics. She’s always been on the low end of the growth chart for height and weight, but she dipped even lower this year. The doctor also said most likely she’d be 4 feet, 11 inches. Usually during her checkups, her height was predicted at 5 feet  or 5 feet, 1 inch. Her doctor asked us to take her to a pediatric gastroenterologist.

So, we went to see a pediatric gastroenterologist. He said the only way to definitely find out if she had celiac was to do an Endoscopy. Celiac Disease in kids does affect growth. According to WebMD, “an Endoscopy is a nonsurgical procedure used to examine a person’s digestive tract. Using an endoscope, a flexible tube with a light and camera attached to it, your doctor can view pictures of your digestive tract on a color TV monitor. ”

I had an Endoscopy three years ago, and it turned out I had 5 ulcers. But not Celiac. My husband’s grandmother has Celiac and her sister had it also (who passed away more than 20 years ago).

I really didn’t want to put my daughter through an Endocopy, but if that was the reason why she really isn’t growing as she normally should….
I agreed to the Endoscopy and then I realized that I really would feel more comfortable if I saw a pediatric endocrinologist first. Most likely we were going to have to do this anyway and I really wanted to make sure we were doing the right thing for her.
So we saw a pediatric endocrinologist (who was actually in the same office as our pediatric gastroenterologist). She seconded the Endoscopy and if my daughter had Celiac, we’d follow a gluten free diet. If she didn’t have Celiac, we would have to monitor her growth and talk about options. As far as I know, the only option would be the growth hormone, which we didn’t want. But if it was Celiac, going gluten free may make her grow. Our final task that day was to get a bone x-ray to see the age of her bones.
I still wasn’t sure what to do. What if I put her though the Endoscopy and she didn’t have Celiac? What if she did. I have followed a gluten free diet, so I know it’s not the hardest thing, though I know that some people can’t tolerate gluten in personal care products either.
We finally decided to go through with it and then see what the result was.

My daughter wasn’t scared about the Endoscopy. I told her about it, since I had one 3 years ago. She was scared about getting a shot or a needle. I tried to reassure her, but she kept getting upset.

On May 4th, we headed to Cohen’s Children’s Hospital early. She knew that the needle was coming and she got very upset when we were waiting for things to start.
And yes, she actually hid behind the chair. And it wasn’t funny at the time, but it was her way of protecting herself. A lovely nurse (I think her name was Karen) came in and was terrific. Her young daughter had been through the same exact thing. It made my daughter calmer to hear Karen talk. However, when it came time to put the IV in, my tiny 43 lb 8. 5 year old freaked out and took 3 nurses, plus me, to hold her down. Tears were streaming down both our faces, but she had to get that needle in.

Funny thing, once it was in, she realized that it didn’t hurt. That she was okay. And suddenly, she wasn’t afraid anymore.

She chatted up the nurses and doctor and had a grand old time. I was amazed with her attitude change.
I was ushered out to the room as the medicine in her IV started taking effect and she started falling asleep. Around 10-15 minutes later, she was done and wheeled out. It was really scary to see her unconscious and while I did debate posting this pic, I’m doing so if your child is going to have an Endoscopy, you can see how they may look. You can see the rash on her face from the anaethesia.
It took her around 40 mintues to wake up. I tried waking her up, but I couldn’t. That was really scary. I was sitting with her and stroking her face and hair. And yes, I was upset, but she was okay and the doctor and nurses were around and amazing.

We left the hospital soon after and she was totally fine. Completely opposite of how wiped out I was after my Endoscopy in 2013. We left for Disney World the next day. You would never know she had the proceedure.

The Result:
The test came back negative for Celiac disease! While I’m thrilled that she doesn’t have it, I am upset we had to put her though an Endoscopy. But then again, we now know that she doesn’t have it and while we would have happily changed her diet to a gluten free diet, we don’t have to do it now. Turns out her bone age is 7 years, 10 months.

We have to go back to the Pediatric Endocrinologist in 6 months and we’ll see what her growth is. Most likely we won’t put her on the growth hormone, but I want to know the pros and cons first.

So, if this was your child, would you do the growth hormone? Or did you do the growth hormone for your child?