Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • 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

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired. I haven’t been to an allergist in a few years, I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young...
    2. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply
    3. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways. I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux. Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following...
    4. trents
      - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
    5. Scott Adams
      - Scott Adams replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Yes, some people with celiac disease do seem to deal with frequent infections, especially if they have ongoing inflammation, nutrient deficiencies, asthma/allergies, or another immune issue going on. Low vitamin D can also affect immune function, so it would be reasonable to ask your doctor to recheck vitamin D, iron/ferritin, B12, folate, zinc, and possibly...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,124
    • Most Online (within 30 mins)
      10,442
    HelloFlowersGoodbyeFlour
    Newest Member
    HelloFlowersGoodbyeFlour
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
    • Scott Adams
      Anyone else get a lot of upper respiratory infections?

      By Scott Adams · Posted

      Yes, some people with celiac disease do seem to deal with frequent infections, especially if they have ongoing inflammation, nutrient deficiencies, asthma/allergies, or another immune issue going on. Low vitamin D can also affect immune function, so it would be reasonable to ask your doctor to recheck vitamin D, iron/ferritin, B12, folate, zinc, and possibly general immune markers if this keeps happening. Also, people with celiac disease can have reduced spleen function, or hyposplenism, which is one reason some celiac organizations recommend pneumococcal vaccination or making sure you are up to date on pneumonia-related vaccines. Since you are getting bronchitis, pneumonia, and frequent colds in your late 20s, I would not just brush it off, especially if symptoms are lingering after a week and a half. It may or may not be directly from celiac, but repeated respiratory infections are worth documenting and discussing with your doctor, and possibly with an allergist/immunologist or pulmonologist.
×
×
  • Create New...