Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

First Check-Up Since Going Gluten Free

cdmom1

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748
    Chels22
    Newest Member
    Chels22
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...