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

By StephanieL
in Doctors

Recommended Posts

StephanieL Enthusiast
StephanieL
Posted

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
StephanieL
Posted
  • Author

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

carlao Newbie
carlao
Posted

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
StephanieL
Posted
  • Author

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
mommida
Posted

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
carlao
Posted

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
StephanieL
Posted
  • Author

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
carlao
Posted

Good luck! Let us know how it goes.

JonnyD Rookie
JonnyD
Posted

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.

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


  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748
    PatBurnham
    Newest Member
    PatBurnham
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.