Jump to content

  • 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):

Celiac Center At Chop

Deana Huneke

Recommended Posts

Deana Huneke Newbie
Deana Huneke
Posted

Has anyone been to the Celiac Center at CHOP?

We live in Cincinnati and our daughter is cared for by the Center of Eosinophialic Disorders even though my daughter is not diagnosed with eosinophilia, she just seems to have all the same symptoms ie..failure to thrive, only about 10 total foods she eats, gi tube fed, nissen fundoplication, amino acid based formula. My daughter is anaphalaytic to dairy and latex and severely intolerant to wheat, soy, beef, cherries, barium, adhesives, and bee venom. Our Gi is great, but I do not think I am getting everything I can out of them from the celiac standpoint.

My parents live about an hour from CHOP and I am really wanting to have her evaluated in Philly. I am almost certain we can get a flight through AngelCare and would have no other out of pocket expense since I would stay with my parents.

I am just wondering, should I pursue this to see what CHOP evaluation and care plan would be, options available etc. or should I just continue to see our local GI and research on my own?

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

Celiac.com Sponsor (A8-M):


ryebaby0 Enthusiast
ryebaby0
Posted

I think if you are really curious about what CHOP would say, you should go. That being said, you may have to wait months to be seen, spend a lot of time having records copied (and you should send them to CHOP yourself)etc....it's not as simple as it seems in articles :) They are also likely to want to know, specifically, why you want a second opinion. Are you looking for better treatment? Different? A different diagnosis? Would you be willing to keep seeing doctors there, instead of Cinci? Will your insurance cover a second opinion? Does your current doctor need to sign off on it? (And will they take you BACK if you go there?)

Just some stuff to think about. We got a second from Johns Hopkins, but Pgh wasn't very happy about it at the time. Even so, I think it's worth the work and money and all that if you need/want the assurance that she's getting the best care, especially if her case is complicated. You never know what other doctors might think. CHOP is an outstanding facility.

Archived

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

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

  • Member Statistics

    • Total Members
      134,036
    • Most Online (within 30 mins)
      10,442
    NCGS Celia
    Newest Member
    NCGS Celia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Worsening vision 🕵🏽‍♀️

      By trents · Posted

      Vitamin A is important for vision health. But be careful in supplementing it as it can lead to toxicity. Research it and consult with your medical professional. I do not have a definite answer to your original question but I was pursuing the possible cause of nutritional deficiency. But your visual deterioration could be unrelated to your celiac disease so don't rule that out.
    • Name
      Worsening vision 🕵🏽‍♀️

      By Name · Posted

      Currently 19. Doctors think I was 1 year old when celiac started, but I wasn't diagnosed until 18, because they didn't do lab work on minors. I've been on a strict gluten-free diet for 14 months now. For example only certified gluten-free nuts and I've researched best brands a lot. I take B vitamins, vitamin D, vitamin C, Curcumin with black pepper, black sesame and green tea extract, magnesium, iron, and a little selenium and zinc, beef liver capsules. I recently had my vitamin and mineral levels retested and D is the only one I don't have enough of now. I had my eyes tested at 17 and they were good back then.
    • Scott Adams
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By Scott Adams · Posted

      Not everyone with dermatitis herpetiformis needs to avoid iodine. DH is caused by gluten exposure, but iodine can worsen or trigger flares in a subset of people, especially when the rash is active or not yet controlled by a strict gluten-free diet. Some people react to iodized salt, seaweed, shellfish, or iodine supplements, while others tolerate normal dietary iodine without problems. In most cases, iodine restriction is individualized and often temporary, not a lifelong rule for everyone.
    • trents
      Worsening vision 🕵🏽‍♀️

      By trents · Posted

      Questions: How old are you now? How long ago were you diagnosed as having celiac disease? Do you practice a strict gluten-free diet? Are you taking vitamin and mineral supplements to offset the nutrient malabsorption issues typical of celiac disease and if so, can you elaborate on what you are taking?
    • Name
      Worsening vision 🕵🏽‍♀️

      By Name · Posted

      My vision was good as a teen and now has gotten worse in the last year. Could that be caused by my celiac disease?🤓😎🥸👓🕶️
×
×
  • Create New...