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

Pediatric Gi In Cleveland


StephanieL

Recommended Posts

StephanieL Enthusiast

Says it all :)

We are Dr. shopping. Need to get out of CCF for several reasons.

Thanks!

  • 1 month later...

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



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

BUmp. We really need a new Dr. Anyone know where I can look to find one?

carlao Newbie

Hi Stephanie,

Here is a link to the pediatric gastroenterology department at UH:

Open Original Shared Link

I can not personally recommend any one of them, as we use Akron Children's. I would google their names and see what comes up.

Good luck!

StephanieL Enthusiast

I have tried that. I need to know that the Dr. understands the entire scope of Celiac as ours do not ( I had to dx my DS with hypothyroid as they weren't up to it to know the two often go together).

Thanks though.

mommida Enthusiast

Hi Stephanie,

I am from Michigan, so I don't understand CCF.

I would try to get my daughter into Cincinnati Children's Hospital. My daughter has probable Celiac, but most definately Eosinophilic Esophagitus. CCH is one of the leading hospitals for EE. EE has a connection to Celiac. There is a recent article from the Ottawa Sun (March 28,2012) about an allergy causing hormone discovery. It primarily relates to EE and asthma, but who can say if it doesn't have a connection to Celiac. It appears that if there is a malfunction with miR-375 (microRNA) which is regulated by a gene, IL-13, the IL-13 determines wether or not to give the individual "allergies".

Since Eosinophilic Esophagitus is mainly diagnosed through an upper endoscopy with biopsy, there has got to be some pediatric gastroenterologists at Cincinnati Children's Hospital Medical Center who know what they are doing. :)

I have considered driving there from Michigan. :rolleyes:

carlao Newbie

mommida -

CCF is Cleveland Clinic Foundation.

Stephanie -

I did see on US News Top Doctors that Atiye Aktay, MD from UH Rainbow specializes in feeding disorders, celiac, and capsule endoscopy. Maybe try a consult and see if you like her?

StephanieL Enthusiast

mommida -

CCF is Cleveland Clinic Foundation.

Stephanie -

I did see on US News Top Doctors that Atiye Aktay, MD from UH Rainbow specializes in feeding disorders, celiac, and capsule endoscopy. Maybe try a consult and see if you like her?

:huh: Been there (Dr. Aktay) done that won't go back ;) I think I may have found someone. I'll let you all know how it goes. Not that I have much faith at this point.


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



Celiac.com Sponsor (A8-M):



carlao Newbie

Good luck! Let us know how it goes.

JonnyD Rookie

Judy Splawski is really good. We used to take my oldest daughter to her and were always happy. She's very nice too.

I too stay away from the Cleveland Clinic. ;)

JonnyD

Disclaimer: Not sure if it matters but my oldest did not have celiac but we saw Dr Splawski for other GI issues.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748

    KTH
    Newest Member
    KTH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.