Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Looking For Help

spac4c333

By spac4c333
in Doctors

Recommended Posts

spac4c333 Newbie
spac4c333
Posted

Hello, I am new to this forum but in desperate need of help. I have a 10 year old daughter who since 2004 has a stomach ache/ constipation. Back and forth to drs at onset had an endoscopy done he said nothing was wrong giver her pepsid. She had a c-t scan around the same time no outcome. Pains are getting worse I went to a new gastro he put her on a high fiber diet within 2 weeks she has losst most of her eye lashes. At his visit I had 2 years worth of blood work a lot of allergy tests, the nurse looked and asked if she had celiac. Not to my knowledge but thats why I am here. The dr was more concerned with the constipation and not the pains in her stomach. I want to get her tested for celiac and I cant find a dr with enough knowledge of Celiac. Had routine blood work last week they said all is normal. My child isn't normal their is a problem with her, she lays around because she has no energy she eats very often and she is not lazy so please dont get the wrong idea. SHe tries to play with her friends she tires easily. ANy help in the ny nj area i would appreciate it

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Welcome to the Board

If it were me, I would take her off gluten entirely and see if she has a positive dietary response. No doctor needed for that. Although, if you choose to pursue testing, in order for the test to be accurate (as they are not always reliable) she must continue to eat gluten.

Many people here are self-diagnosed and feel very comfortable with that choice.

Celiac disease has over 200 symptoms and your daughter certainly has several.

This site if full of wonderful information regarding celia. Learn as much as you can.

I hope you find a solution soon.

Guest j_mommy
Guest j_mommy
Posted

BE A PUSHY MOM!!!!! :) Tell the Dr what you want(her to be tested for Celiac) and if teh Dr won't do it, choose another. I have had these symptoms for 24 years....my Dr just brushed it off as family history and that it was normal for me. When my son was a year we both switched Dr's b/c that one wasn't listening. It was the best choice I have ever made. This dr immediatly had me tested for celiac when I brought up my "issues"and low and behold I was positive....after 24 yrs I now know what's wrong and can fix it! The best thing you can do is be proactive for you and your daughter. Dr's know alot but this disease is sooooo overlooked and forgotten about.

dionnek Enthusiast
dionnek
Posted

I went through 10 doctors before I foiund one who could figure out what was wrong with me (I had never heard of celiac disease - just got lucky that that was the first thing he tested!). Do a search on the internet for the right tests you need - I can't remember what the website is but the university of chicago has a great celiac website that has a listing of the proper tests. Of course, she has to be eating gluten for the tests to work.

ckmom Rookie
ckmom
Posted

Dionnek -

My 6 yr old daughter was recently dx. with celiac. We live in central NJ. We go to MMH (Morristown Memorial Hospital) The children's Goryeb center. The gastroenterologists there are great! I hope this helps and good luck!

spac4c333 Newbie
spac4c333
Posted
  • Author
Dionnek -

My 6 yr old daughter was recently dx. with celiac. We live in central NJ. We go to MMH (Morristown Memorial Hospital) The children's Goryeb center. The gastroenterologists there are great! I hope this helps and good luck!

Thank You so much I will look into them today

SunnyDyRain Enthusiast
SunnyDyRain
Posted

I had to tell my doctor "I want the celiac blood panel done." She told me that she didn't think my symtoms fit, but agreed to at least try. It came back with anti-bodies, and she told me it was a good call on my part.

I'd ask for the test, it's just a vial of blood. Could help her beyond belief!

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,280
    • Most Online (within 30 mins)
      7,748
    Celiac and Salty
    Newest Member
    Celiac and Salty
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • numike
      is my cleiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my cleiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
×
×
  • Create New...