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dreamindarlin

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

In Topic: Celiac With Crohns Ileio Colitis

09 October 2008 - 05:41 AM

I am new to this forum and hope to get some helpful advice from all you. My 17 yr.old son(2 weeks shy of 18) has just been diagnosed with celiac and Crohns ileio colitis. We received his diagnosis quickly after a complete GI scope.
The GI doctor appears to be on the ball, having concluded the diagnosis, however, my hesitation is when he told us to look it up at WebMD and ask him any questions. While the diagnosis most likely is correct, I am left wondering if we should find another doctor to review the tests to either exclude or include any further findings. Also, my son is continuing to lose weight( most likely his anemia), while other symptoms have been improving. The doctor didn't suggest a nutritionist, is this a good idea?



My son is only 6 and he was diagnosed as well by an endoscopy......However all of his blood test/markers have been negative for celiac. We have been on the gluten free diet for over a month now and he is no better......he is still having bloody diarehea, losing weight, severe stomach pain. His doctor told me he was "shocked" that his biopsy came back positive for Celiac's and lets try the diet to see how things go. He also said it could be some other things but he didn't want to "overwhelm" me right now. He is up at night with pain and I called and he goes in a few minutes back to the doctor. I am anxious to see what his new blood work shows and the bone scan results. I think he will order more test but who knows? We have a appt in NY at the Celiac Center on Nov. 6 for a second opinion but it will be such an expensive trip I don't see us making it there now. I will probably get him an appt at a big city (closest one is about 2 hours from me.)
I would suggest a 2nd opinion. I've read and read books and internet articles. A positive biopsy is conclusive of Celiacs Disease IF the blood test backs it up and the diet is working. However having a biopsy that suggests Celiacs there are also other causes that can mimic that on the scope. Hope this helps.....

In Topic: Has Anyone Ever Been To The Celiac Center In Ny?

27 September 2008 - 06:39 AM

Sorry if I missed the answer to this: did he have ANY positive blood test results for antibodies to gluten? (Did they DO a celiac panel?) And did he improve on the gluten-free diet?

I would think that the only situation where you need to question the diagnosis is if he has unresolved symptoms As you read, there ARE other causes besides celiac for a positive biopsy--but if he's improving on the diet, that reinforces the diagnosis, doesn't it?


He tested negative for all 3 blood markers on two different occasions. He is better than he was in the hospital but if it was a bug he would be right? He still complains of stomach pains and we have been doing a strict gluten free diet since the 16th. So he is the same as before he went into the hospital. He does have a new symptom........hip pain? He says his legs hurt. But he points to his hip....?

In Topic: Has Anyone Ever Been To The Celiac Center In Ny?

27 September 2008 - 05:54 AM

I wanted to add that we don't have alot of money........we are barely scraping by. My husband says we owe it to our son. This is a life changing-life long illness and we just need to be sure.

I've read and read and so many have been to doctor after doctor with problems unil they were diagnosed with Celiac's. This is not the case with us. I took my son to doctor and was told he had a virus or early appendicitis and to watch him. When he threw up blood I took him to the ER and after a CAT scan diagnosed him with intussesseption. We spoke briefly to a surgeon and they admitted him. His fever and diareahea and vomiting blood lasted over a week. We came home had a follow up appt and they said the biopsy was positive for Celiacs.

Before the hospital stay he was pretty healthy. Stomach aches from time to time like all children but that was it. Which is why we want a 2nd opinion. I'm wondering if there are others that have been misdiagnosed? If after the 2nd opinion they say he still has it.......then I will accept that. It's hard when he asks me for something and I have to tell him no. He's only 6 and just doesn't understand, he thinks mommy is being mean.

In Topic: Has Anyone Ever Been To The Celiac Center In Ny?

27 September 2008 - 05:28 AM

I haven't been to Columbia, yet I know many who have been there. In my support group, we have several members who have been to Dr. Green. I also have talked with Dr. Green on many occasions.

I can tell you, they do not accept too many insurance's and the first visit with him is $500. Most say he is worth every penny, yet some of us do not have that many pennies. It also can take months to get an appt with him.

Where do you live? Are you somewhere on Long Island? There is a pediatric gastro at Stony Brook who many seem to like.


Wow! I was told Dr. Green only sees adults....we have an appt. with Dr. Kazlow at the Celiac Center. And I've spoken with them on several occasions. We are so lucky that they accept our insurance so we have to pay a 50 dollar copay. We live in the middle of nowhere lol. Asheville, NC. We have a total of 2 pediatric gastro doctors and they are in the same practice together. The nearest big city is Charlotte NC and there is no celiac center there. I've read articles by Dr. Green and he knows his stuff!

In Topic: Odd (oppositional Defiance Disorder)

26 September 2008 - 03:56 PM

Well my son was diagnosed about 2 years ago. I'm not sure if it is related to Celiac's or not. We are still unsure if our son even has Celiac's. But I'm intrested to see what others have to say.....