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dreamindarlin

Member Since 16 Sep 2008
Offline Last Active Oct 18 2008 06:14 AM
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Topics I've Started

Concerned About Upcoming Dr. Visit Help!

02 October 2008 - 12:18 PM

Hi,

Many of you know we have scheduled an appt for our son in NY on Nov. 6th at the Celiac Center for a 2nd opinion. I just got off the phone with a nurse from there and she said to stop the diet? She said he has to eat a normal diet for at least 2-3 weeks before he comes.

Now I'm concerned what if he gets really sick? We arent 100 percent sure if he has this disease.....all blood tests and repeated blood test say no but the biopsy said yes. However since he got out of the hospital and started the diet he is still having bloody diareahea and stomach aches. I'm terrified that will get worse and he will end up back in the hospital.

On the other hand I guess it will tell us if the diet is helping at all or not?

I'm just not sure what to do???

Has Anyone Ever Been To The Celiac Center In Ny?

26 September 2008 - 10:29 AM

We have been following the gluten free diet since the 16th. Boy it has been tough!! I have done more research and reading in the past couple weeks than I think I have done in my life!

Did you know there are other problems that will mimic a positive biopsy other than celiac's disease? Bacterial Infections, Helicobacter pylori infection, lymphoma, autoimmune enteropathy. However if you have classic celiac type symptoms, a positive specific antibody (anti endomysial or transglutaminase antibody) and a positive response to a gluten free than celiac is the likely cause. The likelihood is further increased if you carry one or both of the two major genes DQ2 and or DQ8. You can read more at

http://Spammers Use ...x...y&id=315570

We are seeking a second opinion because my son doesn't have the typical symptoms nor does he have any blood markers or the gene.

Sooooo was wondering if anyone has been to this place in NY? They have an awesome website and great reviews.

I Just Thought About This?

20 September 2008 - 09:06 PM

Any ideas for Halloween? What's the best way to go trick or treating? I've been looking at candy and trying to find out which ones are gluten free. But kids get such a variety on Halloween....I'm kinda stumped on what to do.

Beef Stew Okay?

20 September 2008 - 12:52 PM

I was browsing through Hormel's website and Dinty Moore Beef Stew is listed as Gluten Free.......just wanted to make sure????

New Here....just Found Out Today...

16 September 2008 - 03:01 PM

:( Until today I had never heard of this disease. I think I'm still in shock from the doctors appt today. Here is a little background.

About 2-3 weeks ago I took my 6 year old son to his peds dr. He had a fever, vomiting, stomach pain, and diarehea (sp?) Doctor sent us home and said it was a virus or early appendicitis. That was on a Friday. On Monday he was so sick and threw up blood. I took him to the ER. They did a CAT scan and told me he had intussesption (One part of his colon was basically slipping into another) They admitted him and he spent 4 days there. They did an endoscopy and the doctor told me it was normal except for some inflammation and they took some biopsies. He seemed to be doing better we came home and saw the doctor today. My son's biopsy came back positive for Celiacs disease. BUT,
his blood test were negative for it. The did more blood work today and are looking at 3 different markers. In the meantime he is to start the gluten free diet and the will recheck his blood in a month. He also scheduled him for a bone density scan this Friday.

I have been reading and reading trying to learn all I can about this. I keep crying about it........what about his bday cake? No cookies, no pasta, pizza. Seems like everything is a no no. The doctor also told me Celiacs causes brittle and weak bones thus the reason for the denisty test and can cause him to lose teeth?

My husband is all for a 2nd opinion and there are no other specialist around here. But I am willing to drive.
Sorry to make this so long Im so scared and needed to vent. Any advice or info you have I would appreciate.

Thank you