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Celiac Center At Chop

Deana Huneke

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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?

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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.

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
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    • Wheatwacked
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      By trents · Posted

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      By cristiana · Posted

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