First Check-Up Since Going Gluten Free

[cdmom1]

So my son had his first follow-up exam. He is still 46 pounds, same as he was back in February. Gluten free since July, no gain. He grew 3 centimeters since May, which is about 1 inch in 6 months. The doctor seemed to think this was good progress, where my husband and I felt completely discouraged. He went on to explain that it could take up to 2 years to see changes! We took 8 viles of blood, and truly hope to see some change in the levels. We asked (again) if there could be a relation to celiac disease and GH deficiency. He says there really is no link, but our endo Dr. still wants to wait until he is a year gluten free. I can't see why we should wait to pursue the testing if there is no correlation between the two.But, whatever.

I really wish we had some significant progress. It would make this alot easier to accept. My son is starting to question why we made all these changes if he never felt bad in the first place. It is hard to explain to an 8 year old that even though he feels perfectly fine, there is damage to him that he can't see. It is not concrete and hard for him to grasp. It is tough for him every week when teammates bring donuts and cookies to share after a game and he has to say no every time. I have offered to bring things in case someone brings treats he can't have. He tells me no, don't worry about it. But, when I see him in the locker room just looking around at the other kids, it breaks my heart.

[ravenwoodglass]

Bring those treats even though he is saying not to. I think your doctor has the right idea in waiting on the growth hormone inquiry. There is a good chance he will catch up it can just take some time. If you haven't seen any growth after a year gluten-free then do consult about the issue of giving him the hormone.

[T.H.]

re: GH and celiac disease, celiac.com had some research they'd mentioned on this topic a while back - there's a link to it here:

GH deficiency

I can't recall all the details, but I thought that they HAD found a link. I could be wrong - but it's all there.

So sorry it's so hard! We're in a similar spot. We had 4 family members diagnosed positive, and my 8 year old son was negative. With so many in the family, though, we all went gluten free. And going gluten free, we noticed some emotional/mental problems improved significantly for our son. We decided to keep him gluten-free too. However, he doesn't notice the differences, so to him, it feels like we are making him go gluten free for nothing.

Very hard.

After a year, we did a gluten challenge for a week, and there was actually a noticeable physical change for him. Since then, that's helped him realize that yes, it causes problems, and it has been a bit better. Don't know that this will help, but for both my kids (neither of which had noticeable symptoms) they both now have physical symptoms after being gluten-free for a while. Perhaps that will occur with your little one so that he will have something concrete to hold on to.