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First Check-Up Since Going Gluten Free

cdmom1

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cdmom1 Rookie
cdmom1
Posted

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.

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ravenwoodglass Mentor
ravenwoodglass
Posted

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. Community Regular
T.H.
Posted

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.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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