Jump to content

  • 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

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants
      10

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      Re: Michelin star. To give an example, the Ritz Hotel in London has two Michelin stars. Here's another article about Michelin stars - from our own archive.
    2. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Insomnia help

      Very helpful @knitty kitty. Thank you. I am trying to remember what vitamin so alarmed my GP and I have a feeling it was A or E. I remember reading the pills contained well over the 100 per cent RDA of whatever the vitamin was. One thing I'd love to ask you that has always intrigued me. One day when my anxiety was completely through the roof...
    3. cristiana
      - cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants
      10

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      @trents Good question. We are strict at home, although I have to admit I've eating the odd chocolate at Christmas that turned out to have been made in a shared facility. But that is very unusual for me, and I had my last blood test before Christmas anyway. Therefore I have concluded that eating out must be the issue. But I'll let you know in September...
    4. melthebell
      - melthebell replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all. Will also run the HLA typing - I have the swabs ready to go.
    5. trents
      - trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,498
    • Most Online (within 30 mins)
      7,748
    genliu
    Newest Member
    genliu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • cristiana
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By cristiana · Posted

      Re: Michelin star.  To give an example, the Ritz Hotel in London has two Michelin stars.   Here's another article about Michelin stars - from our own archive.  
    • cristiana
      Insomnia help

      By cristiana · Posted

      Very helpful @knitty kitty.  Thank you.  I am trying to remember what vitamin so alarmed my GP and I have a feeling it was A or E.  I remember reading the pills contained well over the 100 per cent RDA of whatever the vitamin was. One thing I'd love to ask you that has always intrigued me.  One day when my anxiety was completely through the roof.  I 'felt the fear and did it anyway' - a phrase other anxiety sufferers may be aware of, which I found a powerful tool in my recovery -  and visited a friend's house, even though I felt so wretched.  For some reason I craved milk and drank two whole pints of milk in quick succession while I was with her - to this day I can't think why, because I don't usually drink milk 'neat' - I like it in tea or coffee, or hot chocolate.  But I distinctly remember within a couple of hours feeling absolutely fine again for quite a while.  I've often wondered was it down to this milk, which I've since understood contains quite decent levels of B12.  Would that have really worked so fast?    
    • cristiana
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By cristiana · Posted

      @trents  Good question.  We are strict at home, although I have to admit I've eating the odd chocolate at Christmas that turned out to have been made in a shared facility.  But that  is very unusual for me, and I had my last blood test before Christmas anyway.  Therefore I have concluded that eating out must be the issue.  But I'll let you know in September when I have my next blood tests done.  😊  
    • melthebell
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By melthebell · Posted

      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all.  Will also run the HLA typing - I have the swabs ready to go.
    • trents
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By trents · Posted

      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.