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mom2

Member Since 05 Apr 2012
Offline Last Active Private
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Posts I've Made

In Topic: 6 Month Follow-Up After Celiac Diagnosis - Still Poor Growth

08 November 2012 - 04:40 PM

Thyroid is what I was going to suggest checking also. It is not a complicated test, just a little blood for the lab. Autoimmune diseases tend to like each other, so people can have more than one. Hashimoto's thyroiditis is an autoimmune disease that celiacs can get and women get it more than men. You can get Hashimoto's at any age, even as children. The test is for thyroid antibodies, not thyroid hormone levels. Although both should be done. Has she had any throat irritation or swelling? That is one possible indicator of thyroid problems.

I will mention Hashimoto's specifically at her next follow-up. She doesn't seem to have any throat issues that I can tell, but if it's an easy test, it's worth checking just in case...
Thanks!

In Topic: 6 Month Follow-Up After Celiac Diagnosis - Still Poor Growth

08 November 2012 - 04:31 PM

I wanted to let you know that we are in the same boat! My son has been seeing a pediatric endocrinologist due to growth issues since March. My husband and I are not tall, but the concern with my son was that he was no longer following his growth curve. He dropped off the charts after about 4 years of age when he had consistently been in the 15-25 percentile range. At 8.5 years old he is the smallest in his class by far and others constantly mistake him for a 6 year old (which makes me so sad). He was diagnosed with celiac in August via bloodwork and biopsy and we have had him on a strict gluten free diet since then. We had a visit with the endocrinologist just last week and he grew 1/4" in three months so we were disappointed as was his endocrinologist. We do not have a follow up with our pediatric gastroenterologist until February to retest his TTG levels so we are in a holding pattern unsure of what to do.

When he was tested for celiac his endocrinologist also tested for diabetes and also checked his thyroid and growth hormone levels. The test for diabetes and thyroid were normal and the growth hormone levels were normal but on the lower side of normal. The endo now wants to perform a more invasive but more accurate test of his growth hormone levels. My husband and I feel like we are stuck in reverse because we want him to grow but don't know how long it might take if his only issue is celiac. On the other hand, if he has growth hormone deficiency as well we don't want to waste any more time so we decided to schedule the new test.

I feel badly for him because he is only eight and has had more testing and medical issues than I have had in 37 years.

Sorry for the long ramble, but I wanted to let you know that you are not alone. Sometimes I feel that we are alone in this and I just wish my kid would grow like all the other kids without having to jump through hoops!


Thanks for sharing your son's history. It's comforting to know others are in a similar situation. I was, and still am, hoping that this Celiac diagnosis would lead to a pick up in growth. We haven't been referred to an endocrinologist yet. It seems like every other possibility needs to be ruled out before a growth hormone issue will be diagnosed, so I would imagine that would take a while to determine. How high was your son's TTG at diagnosis? Perhaps your son and my daughter both just need more time to heal. For now, I'm just trying to ensure she's eating plenty of food, high in good fats. If that doesn't do the trick in another 6 months, I'm sure will be referred for more testing.
Thanks!

In Topic: 6 Month Follow-Up After Celiac Diagnosis - Still Poor Growth

06 November 2012 - 01:06 PM

Just want to make sure you have had her thyroid tested. It goes hand in hand with celiac sometimes. My dd was short at 7 and we discovered that she had hypothyroidism. She started the meds and grew 2 inches in 6 months. The doctor said that height not weight is an indicator in children. 4 years later same dd was diagnosed with celiac. Just wanted to throw that out there.


Thanks for mentioning that. The GI did say that it could be her thyroid, but that he would have expected her to be just short (not both short and underweight). Not sure why that would be? She's 4 1/2 and still hasn't made it to 30 lbs yet. Hopefully soon though. She's just tiny overall. I'm pretty sure he will check her thyroid if she hasn't started catching up in another 6 months. I'll make a note to ask about it too.

Thanks!

In Topic: 6 Month Follow-Up After Celiac Diagnosis - Still Poor Growth

04 November 2012 - 08:19 PM

Thank you both for your replies. My daughter does look healthier overall (better color, a little more fleshy) even though she's tiny. Hopefully a growth spurt is just around the corner. I think I will wait and see what happens over the next few months, but I will bring up the Casein allergy at her next appointment just in case. She doesn't seem to have the typical Casein allergy symptoms, so hopefully she has outgrown it. I think avoiding milk would be a lot harder than gluten.
Thanks again.

In Topic: My Daughter's Scope Was This Morning

14 May 2012 - 08:22 PM

The GI who did my almost-4 y/o daughter's scope also said everything "looked normal" during the scope, but the biopsy confirmed she was positive for Celiac (she also had a pretty high positive blood result). We were told to call in 2 weeks for the biopsy results, which is how long we had to wait. I'm sure they had the results earlier, but I decided to wait the full 2 weeks to call as instructed. That was a long 2 weeks. We've been gluten-free since we found out at the beginning of May. It's been a little challenging so far, but I'm learning a lot. Try to keep busy until you get the results. I composed a list of about 10 questions I was planning to ask the GI if the biopsy came back negative. I just wanted to make sure I was prepared for that (sometimes it's hard to remember what you want to ask, so it's good to have things written down). Hope the wait isn't too long for you...