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I posted two messages which I will summarize together. The original Questions were:
Can Celiac cause scar tissue in the large intestine or is this exclusive to Crohn's? I have a young cousin on my husband's side that is struggling for a diagnosis. She could have both I guess??
and
I know there are two doctors that are willing to speak to patients over the phone or via email. I think one is Dr. Fassano. Does anyone have contact information for an expert who is willing to give an opinion on test results?
and
Does anyone know of a good doctor in the NY area for a 13-year old who possibly has Crohn's and Celiac? 
and 
Can Celiac cause scar tissue that is visible by doing a colonoscopy?

Dr. Green was overwhelmingly recommended, so I will not repeat all of those messages. His contact information is: Dr. Peter Green-Columbia University-(212) 305-5590.

Here are the other responses:
Yes, she could have both as I do...I was diagnosed with Crohn's about 22 years ago and found out I had Celiac about 6 years ago....
My son has chromes and his is in the digestive track and small intestine and celiac and chromes are quite different.  I have celiac and he has chrons and he is in much worse condition than I am.  He's in the hospital at least once a year with severe bleeding from a perforation in intestines.

I would suggest you to go to this other exellent site:
http://forums.delphiforums.com/celiac/messages
There are good and knowledgeable people there to answer your questions. Moreover, I have voluntarily posted thousands of GF recipes.

Hi.  There's probably lots of things that can cause scar tissue, including parasites.  A vet once told me horses can have so much scar tissue from parasite damage that they have to be specially fed a super nutrient-rich diet just to survive. Don't see why it couldn't happen in humans. Yes, I have had parasites. Lots of them.  

Celiac is often mistaken for Chrone's, so the poor patient keeps on eating gluten and gets worse and worse.

Dr. Peter Green at Columbia (he is both a professor and practices at the hospital) is far and away the foremost expert in the NY area on CD. Call Columbia for a phone #, or see if he's listed on celiac.com's physician list. I believe he responds to phone and emails as well; he's really a very nice guy.

CD cannot be detected with a colonoscopy. As Dr. Joe Murray has said, "Doctors who look for celiac disease with a colonoscopy are looking in the wrong hole".

I am not a doctor and I don't play one on the Internet, but I have never read of celiac causing scar tissue that far down.

I highly recommend Dr. Joel Rosh at Atlantic Health Systems (north central NJ).  His number is 973-971-5676.  My kids just love him, and insist on my taking them back to NJ for their annual exam--they don't even want to think about seeing a new pediatric GI.  Good luck!

Just caught your email message before I deleted it!  There is a great message board that I found before my son was diagnosed with Celiac over 2 years ago. http://www.dragonpack.com/forums/ibdboard/  
There are people on this board with kids with Crohns, UC , Celiac , Eosinphilic Gasteritis among other things.  My son's symptoms presented like "classic crohns" but were actually Celiac.  You certainly can have both.  My son's teacher the year he was diagnosed has Celiac and Crohn's as does one of her children (adult).  There are people on there from the New York area as well who could help you out no doubt with doctor ideas.  This board continues to be a excellent source of information
for me.  Certainly worth posting a question there for help!

> She could have both I guess??
Yes. According to Dr. Murray it is not uncommon for someone to have both. Then the SCD diet will help no matter which it is.

I use a Dr. Matt McKinley. He seems to specialize in individuals with several conditions. I have celiac, ulcerative colitis and reflux. He  is located in New Hyde Park, Long Island Ny. He use to be head of gastro in North Shore Hosp in Manhasset. 

I am not sure I can help you but want to tell you that my 13 yr old daughter was recently diagnosed with celiac. She had a positive antiendomysial antibody and then had an endoscopy which was psoitive. These 2 tests together are conclusive.

Unfortunately I do not know about Crohn's disease but have been told that a colonoscopy is the definitive diagnosis for that.I do not believe you can diagnose celiac by colonoscopy--but with the endoscopy you can. 

Why don't you call Dr. Peter Green at Columbia University.  His number is (212)  305 5590?  He is a gastroenterologist who has just opened a celiac  center in NYC  Most of his patients are adults, but he started seeing my son when he was 14.  I don't know if he will give his opinion over the phone, but he is extremely knowledgeable about celiac.  I don't know if he is equally familiar with Crohn's. He can be tough to reach on the phone, but I think it's worth a shot.

My daughter has Crohn's disease; after 2 years, we learned she is also gluten intolerant (i.e. she is anti-gliadin IgG positive, anti-gliadin IgA negative, but very sensitive to small amounts of gluten --> causes diarrhea).

I am not a doctor (but I am an RN turned programmer) - from my reading, Crohn's causes severe inflamation of the deeper layers of tissue of the small intestine (but can occur anywhere in the GI tract from mouth to anus). If untreated or severe, the inflammation can progress to "scar tissue" - usually referred in the literature as 'strictures' - inflammation that is irreversible.  In contrast, celiac disease typically causes damage to the villi - the little wave like edge of the intestine (on the inner diameter).

My daughter was diagnosed by an Upper GI series with a small bowel follow through.  She swallowed barium and they watched over the next 2 hours via flouroscope til it reached the ileum (third part of the small intestine). I was able to easily see how thick the intestine wall was (and how tiny the interior diameter was).

The support group for Crohn's disease and Ulcerative Colitis is the Crohn's & Colitis Foundation of America.  Their website is  www.ccfa.org.   The last time I looked, they had a physician look-up feature by state that shows docs who are members of their organization.  They are based in New York City and I'm sure there a many fine physicians there.  Personally, I would look for one associated with a medical school (NYU, Montefiore, etc etc) - if she is young - look for a pediatric gastroenterologist at a Children's Hospital.  They will be much more likely to have had significant experience with Crohn's (it is more rare than Celiac) and with cases that may have features of both diseases.

I have read maybe 2 abstracts on PubMed (Nat'l Library of Medicine website) mentioning Crohn's & Celiac in the same pt.  I think also that Crohn's can cause oozing sores in the small intestine - a more severe 'leaky gut'.  Our
peds GI doc thought that might be why my daughter was anti-gliadin IgG positive.  The IgG part means exposure of the blood to the protein in wheat, rather than just contact with the intestinal tissue itself.  The gliadin leaked into the blood stream, the body recognizes it as 'foreign' and makes antibodies, then the next time there's an exposure (over time) -a reaction to flush the 'foreign' thing away (a.k.a. diarrhea).
My daughter had daily diarrhea for 2 years after diagnosis with Crohn's in spite of being on Prednisone and Imuran (a powerful anti-inflamatory drug used to prevent rejection of transplants).  After she went gf, the diarrhea stopped in  3 weeks.  To this day, when she gets painless diarrhea, I suspect gluten exposure (her Crohn's diarrhea is associated with pain near her belly button).

Living with unrecognized celiac disease leaves a person open to the development of other autoimmune conditions, and the longer a person is eating gluten, the more numerous and the more severe these conditions are likely to be. Check out the medical files in www.celiac.com. 

Your cousin could very well have both conditions. Many doctors stop looking for more problems once they think they have one "diagnosis." Wrong. Many disorders not only coexist, but lead to each other. After I was diagnosed with an extremely rare autoimmune GI disorder (eosinophilic gastroenteritis), my GI would not authorize the blood work that could have confirmed or left open the additional diagnosis of celiac disease, which could have well been the pre-disposing original condition, now that I know more about things. 
I hope your cousin gets a decent investigation of her problems, and that her doctors do not conclude that confirmation of one problem eliminates all others.

When diagnosis is uncertain with local dr.  I reccomend www.finerhealth  or otherwise known as Entero-Lab.  Dr. Kenneth Fine is, in my opinion, the leader in the country in diagnosis because he bypasses all the uncertainties of endoscopies, blood tests and biopsies. 

Many thanks to everyone who responded and also to those who took the time to share their stories. I really appreciate all the help.

Best wishes to all,
Ginger 

YOU CAN HELP RAISE AWARENESS
Ginger McCann
The Gluten Free Exchange
P. O. Box 5046
Clover, SC 29710
803-631-1519
www.gfexchange.com
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