Thursday, March 5, 2015

Celiac and Children's Growth

I recently read an article about a study done in children with celiac disease. The researchers were able to track the children's growth (or lack thereof) and identify those who had celiac.

When I read this, I thought "of course growth is related to celiac." I've known this for years- Sunshine stopped growing for a couple years before we figured out that she also had celiac. Even after she started a gluten free diet she didn't start growing until after she'd done GAPS for awhile and healed some of the damage done to her intestines.

The study touts growth measurements as a non-invasive and inexpensive screening tool, which is great. The only issue I have with it is that it only works on kids with active celiac disease, not just the potential for celiac. This is a concern for us right now since River is getting older and will be in situations where we have to determine how he will eat (nursery at church and so on). Will he be gluten free just in case? Will we allow him to eat gluten and then just wait and see if he develops it (and the host of other problems that inevitably go with celiac)?

We've spent the last couple months trying to get the needed referrals and appointments to get a genetic test done to see if he has the markers for celiac. We finally got in, but the pediatric geneticist said the HLA marker test isn't very accurate and did a different test instead. Unfortunately, it's one that tests to see if you have full-blown celiac (the doctor didn't actually know much about celiac). Since River doesn't currently have celiac, the test didn't show anything. We were offered a referral to a pediatric gastroenterologist who actually treats a number of children with celiac (and therefor presumable knows what they're doing) We'll take him up on the referral in the hopes that the pediatric gastroenterologist has other ideas or is more supportive of the HLA marker test.

Why am I so hung up on the HLA marker test? The HLA marker test is a genetic test that shows if you have the markers for celiac disease. If you don't have the markers, you won't get celiac disease. If you do have the markers, there is a chance you could develop celiac at some point in your life. This may seem rather nebulous, but for Mr M and I, it means we could better determine what our children should eat.

If they don't have the markers, they could eat gluten when hanging out with daddy and not Sunshine and me. I'm past the point of caring if someone's eating a sandwich or something in front of me, but there's no need to rub it in Sunshine's face that she can't eat gluten, since she does still miss gluten.

If River or the baby have the markers, we would play it safe and not feed them gluten and when they get older, they can choose for themselves if they want to eat gluten. This would at least give them a good start on life with less chances of developing celiac as a child. I think it's safe to say that Sunshine has not enjoyed dealing with it, and I don't want our other kids to go through the same thing at a young age.

Sure we could just say we don't eat gluten, but people don't always understand just how important it is that they not feed gluten to our kiddos. I blame the fad-dieters and celebrities who have given gluten free people a bad rap. Having a medical reason to back things up underlines how serious we are and makes it more "official".

1 comment:

  1. My brothers sons only symptom for celiacs was that he wasn't growing. Did Sunshine ever have the test done to confirm hers? Just curious - I'm always filling out Family History forms at the Dr. office and am never quite sure what the official list of things I should check for my kids cousins.