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Looking For Pediactic Dr Specializing In celiac disease In Southest Florida

celiackid?

By celiackid?
in Doctors

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celiackid? Newbie
celiackid?
Posted

Hi

Anyone know a ped doctor in SE Florida? My daughter, now 2 1/2, was dx with possible celiac disease a year ago. She had major stomach issues when she turned 1. After her being treated for severe constipation for several months, she had blood in her stool, rash around her mouth and refused to eat. :unsure: After this the dr finally gave her blood test. She was tested for everything. The tests showed her in the mid range for celiac disease so we were told by her ped to go on a gluten-free diet and retest. After 6 mo we retested and blood work was not that impressive for celiac disease. Went to ped GI who advised to get a biopsy or keep her on gluten-free diet. We are very concerned about putting her "under" for the biopsy :( . As of late she is back to belly problems and were told to put her on laxitives, mineral oil and metamusil.... AGAIN. I think this is a lot for a 2 yr old!!

We are hoping to find dr that has knowledge of celiac disease.....

Any info would be greatly appreciated!!!!! :)

Thx

Kerry

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mart Contributor
mart
Posted

Kerry, whereabouts do you live? We live in Miami, and our son sees a pediatric GI at Miami Children's Hospital. His number, if you're interested is 305-661-6111.

P.S. Don't worry about putting your baby "under" for a biopsy. Believe it or not, that's the easiest part. The preparation, however, two days prior can be pretty hard for a little one. They can only eat popsicles and clear liquids and have to have their bowels washed out by drinking a couple of different types of laxatives. Anyway, at the procedure, they give the baby some oral medicine that will make him groggy. After that, they don't feel a thing. The procedure is quick too, and you'll be glad you did it.

Hope all goes well. Good luck, and hope they baby gets to feeling better.

celiackid? Newbie
celiackid?
Posted
  • Author

Thx! We are in Palm Beach County but are always traveling to Miami to see family so its an easy trip for us. Thanks for the phone number.

We are very torn in regards to the biopsy -- my husband REFUSES. Figured we would see a specialist first to get an idea how to proceed.

Thanks for the info.

aikiducky Apprentice
aikiducky
Posted
The tests showed her in the mid range for celiac disease so we were told by her ped to go on a gluten-free diet and retest. After 6 mo we retested and blood work was not that impressive for celiac disease.

Your doctor seems to be confused. After six months on a gluten free diet, blood work SHOULD be negative. That's exactly what is supposed to happen! And if your daughter is still on a gluten free diet, her biopsy should also be negative. It would definitely be a good idea to talk with a doctor who knows more about celiac disease!

Pauliina

celiackid? Newbie
celiackid?
Posted
  • Author

The drs confusion is making me crazy! We are trying to find a dr that has knowledge of celiac disease and go from there -- find a dr is the problem.

Thanks for your input!

cherylk Newbie
cherylk
Posted
Thx! We are in Palm Beach County but are always traveling to Miami to see family so its an easy trip for us. Thanks for the phone number.

We are very torn in regards to the biopsy -- my husband REFUSES. Figured we would see a specialist first to get an idea how to proceed.

Thanks for the info.

Go to enterolab.com and order a stool and gene panel test for your daughter. I got the run-around from doctors for months. Enterolab diagnosed my daughter and it is done in the comfort of your own home. It is great for little ones. My daughter actually got a giggle out of going pooh in a bucket. And as I heard about the biopsy, the doctor could actually take a sample from a section that is not damaged and you will end up with a negative biopsy. Educate yourself on cross-contamination too. I wish you and your daughter the best.

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