6 Month Follow-Up After Celiac Diagnosis - Still Poor Growth

[mom2]

My 4 year old daughter received a positive Celiac diagnosis 6 months ago (via TTG blood test and scope/biopsy). We originally went to the Pediatrician because of her severe behavioural and sensitivity issues (she was constantly screaming & unhappy, always tired, needed to be carried, and very small for her age). She originally received two TTG tests (results of 108 and 79).

The past 6 months we have made every effort to ensure she has been on a healthy gluten-free diet. We have found the gluten-free diet is actually great and we don't miss gluten at all. She has been wonderful at explaining she is gluten-free to her friends and teachers at preschool and has made me so proud.

We went for her 6 month follow-up appointment with her pediatric GI last week and were so thrilled to see her TTG results are now within the normal range (11). Other positive changes: she is much happier (still has some tantrums/tactile sensitivity issues, but far fewer and much easier to manage), she is much more active (can run, jump and has much more energy), and she has one bowel movement a day instead of 3-4 (we actually didn't realize this was an issue for her until after she went gluten-free).

The only downside is she hasn't grown as much as we (and the pediatric GI) were hoping. She is still very tiny. Because her family members are average to tall in height (ranging from 50-85 percentile), her pediatric GI thinks her being around the 5th percentile for height doesn't quite fit. He suggested she just might need more time to catch up on her growth as her GI system is healing. He wants us to come back in another 6 months to check her growth and blood work again. He is expecting to see an improvement in her height & weight.

I know many parents here have noticed significant growth improvements within the first few months though. Has anyone experienced growth improvements that took closer to a year?

After I left his office, I got to thinking about an allergy test she had when she was around 1 years old. Because she was so small and always sick at that time, her doctor referred her to an allergist. The allergist said she tested positive (by skin prick) to Casein (milk protein allergy) and that she should be taken off milk. Our family doctor, as well as a pediatrician at our Children's hospital, reviewed the results and told us that it wasn't an unusual thing and that many babies/toddlers are allergic to milk, but outgrow it. Therefore we didn't need to take her off milk (and she still has milk). She doesn't really seem to have any allergy symptoms aside from the fact that she always seems to have a dry, stuffy nose. Anyway, even though it was over 3 years ago, I think I will mention this Casein allergy test result to her GI in case it is still an issue for her and might be affecting her growth? I don't know much about allergies, but she doesn't have any face rashes or bowel issues now, so I'm guessing she might have outgrown it??

Sorry for the long post. Let me know if you have any thoughts on taking longer to grow and/or Casein allergies...

Thank you!

[my3monkees]

I can't say my dd had a huge growth spurt after diagnosis, but she was older 11. Even now at 15 she is very thin. But even without a huge change in size, she was healthier. Before diagnoses she actually looked sickly, toothpick arms and bloated stomach. Looked like those pictures of malnourished children. Which actually she was, come to think of it! LOL Her height and weight didn't change dramatically. But her overall appearence improved drastically, more proportioned. While she is still thin, she is a healthy thin, not sickly and skinny. Hopefully that makes sense. Regarding the casein. We figured out when she was an infant that she had dairy issues. I couldn't have any dairy the entire time I nursed her. Otherwise she had horrible gas issues, and eczema. She did seem to somewhat outgrow it for several years. Then for awhile she could handle lactose free dairy. But now she can't handle any dairy in any form. HTH

[kareng]

My kids don't have Celiac but they grew in spurts. Maybe its not her time for a "spurt"? I would get worried that one hadn't grown for 6 months. Just bought them the same size shoes and a pair of boots. A month later the pants were all too short and the new shoes & boots too small. My boys' feet always grew first then a month or 6 weeks laterm the rest of them grew.

I don't know that a milk allegy would affect her growth. You might need to research it a bit. Becareful, there are some wierd sites with people pretending the are real MDs.

Maybe contact the Celiac ct at the Univ of Chicago. the head is a pediatric GI doc.

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[mom2]

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.

[1974girl]

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.

[mom2]

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!

[rami]

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!

[GFinDC]

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.

[mom2]

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!

[mom2]

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!