Looking For Help

[spac4c333]

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

[Lisa]

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]

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]

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]

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]

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]

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!