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Has Anyone Ever Been To The Celiac Center In Ny?

dreamindarlin

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dreamindarlin Rookie
dreamindarlin
Posted

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

Open Original Shared Link

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.

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momofboys05 Newbie
momofboys05
Posted

I am soo new to this its not funny. About a week ago my 7 yr old saw the gi and said she wanted to do a biospy on him because she believes that he has this disease. He is 34 lbs 43" and hasnt gained or grown in 2 months. He was 4'8" at birth, i didnt do anything that i shouldnt have done while pregant with him. Since he started kindergarten about 2 yrs ago he started having accidents, he wouldnt sit still in the class room, would hide under tables, walk out of the room, jump around like a frog, he would sneek into my kitchen at nite to sneak food after he would be put to bed for the nite. He wouldnt sleep till sometime after 1 am and be up by 6 am. He was lying all the time about everything. He got a knife that was in a box that was just on the entertainment center for show, we never opened it to show anyone or anything like that. One day he came out of his room and came into mine where i was doing laundry and said he cut his finger on his brothers toddlers bed, which at the time was metal. I felt all over the frame and didnt find anything, figured maybe he caught it just right. Then I walk out into the living room and notice a picture was missing from the entertainment center so i looked behind the couch where they liked to put things and noticed the box for the knife. I got scared because at that moment i knew someone had the knife. I had 3 kids all under the age of 5. The youngest being 2. I tryed to get him to tell me where the knife was so noone would get hurt. I found there thomas sofa all cut up. We ended up finding the knife inside the play couch. We tired for 2 hrs to get him to tell us where the knife was. He is doing alot better now, with the bahavoiral things but still having accidents in his pants. I dont know if any of this means anything to anyone but I just want to help my little boy. Its been a rough 2 yrs. Been fighting with his school because of the accidents. I would have to take him out of school bring him home, change him and clean him up and then take him back. Then they had him go in 2 hrs late to see if his accidents would stop at school. They didnt. They did over the summer till about thanksgiving time last year. So far this school year he's had noone at school but dozens at home. Please if anyone can help it would be apprecaited. Thank you.

dreamindarlin Rookie
dreamindarlin
Posted
  • Author
I am soo new to this its not funny. About a week ago my 7 yr old saw the gi and said she wanted to do a biospy on him because she believes that he has this disease. He is 34 lbs 43" and hasnt gained or grown in 2 months. He was 4'8" at birth, i didnt do anything that i shouldnt have done while pregant with him. Since he started kindergarten about 2 yrs ago he started having accidents, he wouldnt sit still in the class room, would hide under tables, walk out of the room, jump around like a frog, he would sneek into my kitchen at nite to sneak food after he would be put to bed for the nite. He wouldnt sleep till sometime after 1 am and be up by 6 am. He was lying all the time about everything. He got a knife that was in a box that was just on the entertainment center for show, we never opened it to show anyone or anything like that. One day he came out of his room and came into mine where i was doing laundry and said he cut his finger on his brothers toddlers bed, which at the time was metal. I felt all over the frame and didnt find anything, figured maybe he caught it just right. Then I walk out into the living room and notice a picture was missing from the entertainment center so i looked behind the couch where they liked to put things and noticed the box for the knife. I got scared because at that moment i knew someone had the knife. I had 3 kids all under the age of 5. The youngest being 2. I tryed to get him to tell me where the knife was so noone would get hurt. I found there thomas sofa all cut up. We ended up finding the knife inside the play couch. We tired for 2 hrs to get him to tell us where the knife was. He is doing alot better now, with the bahavoiral things but still having accidents in his pants. I dont know if any of this means anything to anyone but I just want to help my little boy. Its been a rough 2 yrs. Been fighting with his school because of the accidents. I would have to take him out of school bring him home, change him and clean him up and then take him back. Then they had him go in 2 hrs late to see if his accidents would stop at school. They didnt. They did over the summer till about thanksgiving time last year. So far this school year he's had noone at school but dozens at home. Please if anyone can help it would be apprecaited. Thank you.

My son was diagnosed with ODD (Oppisitional Defiance Disorder) about 2 years ago and were told he has some developmental delays. He is in 1st grade this year. My child lies alot and used to have tantrums where he would try and hurts his self. (Bang toys or anything on his head till it was bleeding) When he started Kindergarten he improved almost 100 percent. As far as the accidents my son still has them an average of 1-2 times a week. He doesn't realize he has to go until he feels it in his underwear. We are dealing with this as best as we can.......what else can you do?

Your son does sound VERY small 7 years old and 34 pounds? There is something going on. My suggestion is if you aren't getting anwers/test from his pediatrician...it is time to find a new doctor. Does he complain of stomach aches alot? Any rashes?

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hi, Dreamin Darlin and Mom of boys,

I just started a new thread

(Open Original Shared Link)

relating to what you've both written on this one. I think you might be on to something!

Hope we all find answers!

darlindeb25 Collaborator
darlindeb25
Posted

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.

momofboys05 Newbie
momofboys05
Posted
My son was diagnosed with ODD (Oppisitional Defiance Disorder) about 2 years ago and were told he has some developmental delays. He is in 1st grade this year. My child lies alot and used to have tantrums where he would try and hurts his self. (Bang toys or anything on his head till it was bleeding) When he started Kindergarten he improved almost 100 percent. As far as the accidents my son still has them an average of 1-2 times a week. He doesn't realize he has to go until he feels it in his underwear. We are dealing with this as best as we can.......what else can you do?

Your son does sound VERY small 7 years old and 34 pounds? There is something going on. My suggestion is if you aren't getting anwers/test from his pediatrician...it is time to find a new doctor. Does he complain of stomach aches alot? Any rashes?

He has not complained of stomach aches or rashes. The pedi that he has which is 2 different onces in the office that we go to are the only ones that have taken the time to listen to me. They are both females. The males doctors i have seen have blown me off and just told me to put him on the potty more often. Or they would give me medications that he didnt need so that he would poop,which just turned it into a big mess. Now we are having him see a gi pedi and after the 2nd time she saw him he hadnt grown any in 2 months, she was even more concerned then she was the first time she met him. She found out after the first apt and blood work she orded that he was anemic. She is no skirting around like the doctors my son has had in the past. I am wondering what oppisitional defiance disorder is.

dreamindarlin Rookie
dreamindarlin
Posted
  • Author
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!

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dreamindarlin Rookie
dreamindarlin
Posted
  • Author

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.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

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?

dreamindarlin Rookie
dreamindarlin
Posted
  • Author
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....?

RiceGuy Collaborator
RiceGuy
Posted

Many find that gluten-free is not enough. Please try dairy-free as well. There are a few main reasons why it is a necessary step for many. Both casein (the primary milk protein) and lactose can be troublesome, especially during healing.

Many on this board seem to like Enterolab for testing, so you might want to check into that.

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