Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Picking A Pediatric Gi Doctor
0

1 post in this topic

Hi - My daughter has had Celiac disease symptoms for 2 years (she is 8). She has a very high transglutaminase level (89) and a normal Endomysial test. Her biopsies came back negative two years ago. I have written the message board about the difference between the EMA and TtG tests. Thanks for the response.

Paige has also shown signs of almost reflux type gas, I can't tell if this is related or not to her other stomach symptoms. Recent bloodtests still show the TtG very high but the EMA remains normal. I have to go back to the doctor on Wednesday to discuss results and next steps. We may go in for another biopsy but I think since her EMA is still showing normal we may get negative biopsies again. Protocol with the Cleveland Clinic is a positive biopsy, but my question is at what cost? She is not gaining weight and is slightly off her growth curve now.

When do I say enough and get another opinion? I am just about there right now. I plan on pushing the doctor for a gluten challenge regardless of another scope or not. What other signs could there be that may throw our indication one way or another, her IGA's are high but that is not a good indicator. My push to the doctor is that if the TtG test is sooo sensitive isn't it better to start treatment before there is damage to the vili?

I fear the doctor is protocol oriented, if so who can you turn to find a good pediatric GI. (I am sure the one I have is a great GI but this has been 2 years now). We are located in Cleveland Ohio.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,144
    • Total Posts
      919,567
  • Topics

  • Posts

    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
    • Many things can damage the small intestine besides celiac disease: http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ Happily, I can share that I became a Great-Aunt this week for the first time  to a charming little boy. Sadly, my lovely 19 year old niece was diagnosed yesterday with Crohn's.  She had so many symptoms of celiac disease, I was sure she had it.  Actually, I was hoping that she'd have it, because Crohn's can be much worse.  At least there is a "cure" or known trigger for it -- gluten!   Anyway, your daughter might be suffering from something other than celiac disease.  It is possible.  It could be a food intolerance (e.g. milk).  My niece has suffered for years with periodic episodes of abdominal pain, vomiting, etc.  She doesn't have all the "classic" Crohn's Disease symptoms either, yet a recent pill cam revealed a lot!  Her endoscopy was normal.  Celiac panel normal.  Gallbladder scan normal (non-functioning gallbladder is a family curse).  My heart goes out to her, but at least we know what we are dealing with.  Will she ever get celiac disease?  It could happen. Keep advocating, Mom.  That's what I kept telling my SIL.  I also provided my SIL  a family health history tree that each GI was happy to receive.  Unfortunately, no one has had Crohn's in the family.  But, at least it allowed him to test my nieces gallbladder and for celiac disease (a full panel,  mind you).   It would not hurt to get a second opinion.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,176
    • Most Online
      1,763

    Newest Member
    Red Butt in hemet
    Joined