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

Transitioning To An Adult Gi


ryebaby0

Recommended Posts

ryebaby0 Enthusiast

My son was dx almost 10 years ago, and has been under the care of the same group (and basically the same doctor) at Children's Pittsburgh all that time. He has an additional dx that necessitates immunosuppressive meds and monitoring. Anyway, son wants to stop driving 6.5 hrs round trip for the checkups twice a year (it will be particularly hard to schedule now that he is in college) and I get that eventually we'll need to find an adult GI, anyway.

Asked the peds GI and he really only wanted to recommend another Pgh doc, which hardly solves the problems. So how do I find another doctor? I've looked at the major practices in my area, and none have anyone who specifically is interested in celiac. We are not far from Hershey, but he was seen there at the very beginning and we are profoundly not-impressed with their care. Can you interview doctors? Schedule a visit to see what they know? The peds gi is a momma's security blanket and I'm hanging onnnnnnnnn :)

  • 4 weeks later...

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



Celiac.com Sponsor (A8-M):



mamaupupup Contributor

:) I would do the same as you do :)

Try calling the Celiac Disease Foundation for a referral! Yes, interview doctors! I even offer to pay out of pocket just because I want really good care...

It's exciting that he is taking his medical care seriously, so that is great news!

Good luck!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,567
    • Most Online (within 30 mins)
      7,748

    Silver82
    Newest Member
    Silver82
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your genetic test results confirm that you carry the highest-risk markers for celiac disease, specifically the HLA-DQ2 haplotype (while being negative for HLA-DQ8). The fact that both HLA-DQA1*05 and HLA-DQB1*0201 appear twice means you inherited identical copies from each parent, making you homozygous for these genes. This double dose of the DQ2.5 haplotype is significant because it indicates an even stronger genetic predisposition to celiac disease compared to those who only inherit one copy. Research suggests that people with this homozygous pattern may have a higher likelihood of developing the disease, potentially more severe immune responses to gluten, and a stronger association with dermatitis herpetiformis (which aligns with your diagnosis). While this genetic profile doesn’t guarantee worse symptoms, it does reinforce why strict gluten avoidance is critical for you. Since you’re already diagnosed, the main takeaway is that your results explain your biological susceptibility—no further genetic counseling is needed unless you have family planning questions. The repeating variants simply mean both parents passed you the same high-risk alleles, which is why your body reacts so strongly to gluten. Ultimately, your diagnosis and management remain the same, but this insight helps underscore the importance of lifelong dietary diligence.
    • Scott Adams
      It sounds like you and your daughter are navigating celiac disease with a lot of care and dedication, and it’s wonderful that you’re prioritizing her health and growth during this critical time. Since her antibody levels and growth have plateaued, tightening up her diet by avoiding eating out (except at dedicated gluten-free places) is a smart move—even if it’s challenging socially. Many parents of celiac kids report significant growth spurts once gluten exposure is minimized, so there’s hope she’ll catch up if her levels improve. As for the future, while her growth window closing may reduce some risks, celiac is lifelong, and staying as strict as possible will likely always be best to avoid long-term complications, even if occasional cautious outings become manageable later. Navigating this with a teenager is tough, especially with spontaneous social events. For unplanned outings, keeping safe snacks (like GF protein bars, nuts, or fruit) in her bag or your car can help. To boost nutrition, try sneaking in variety where you can—like lentil or chickpea pasta instead of rice pasta, or adding veggies and proteins to her favorite dishes. Involving her in meal planning might help with pickiness, and connecting with other celiac families or support groups could provide social strategies and emotional support. It’s exhausting, but you’re doing an amazing job—your efforts now will set her up for a healthier future. Hang in there!
    • Scott Adams
      This is good news--I hope we can get this done on a national level!
    • Scott Adams
      I use a blender and have made various juice recipes over the years. 
    • captaincrab55
      Pharmacies personnel need training to prevent cross contamination.     
×
×
  • Create New...