Testing for Crohn's. Is there currently a genetic test for Crohn's?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 10/12/2007 6:13 PM (GMT -7)   
I was told three years ago that I had Crohn's. After clinical trials and every medication prescribed for
this disease I became so sick that I ended up in the hospital in July with a very sick colon and had my colon
removed. At that time I was told I had colitis. I now have an ileostomy and was told the pathology test on my
colon are inconclusive and reconstructive surgery would not be advised unless we can prove I don't have
crohn's. Is there a genetic test for crohn's? Has anyone had it done? Thanks, Fruitcake

kickboxer
Regular Member


Date Joined Sep 2007
Total Posts : 123
   Posted 10/12/2007 7:18 PM (GMT -7)   
i was told about a bloodtest a few days ago by somebody on this board, which is apparently 80-92% accurate in determining whether someone has chron's or colitis. I am thinking of trying it. Check out www.prometheuslabs.com, click on products and services then click diagnostics and then click IBD serology. It asks you if you are a physician or something, just click yes and then you can view a brochure which gives you information on the test. I believe it costs 445$. but for me, it's worth it to have the comfor tin knowing which of the two i have as i am sort inbetween the both right now, the g.i is saying he "thinks" i have chron's-colitis. Well i'd like a more definite answer. Hope this helps
VSL#3
Progressive - Calcium and Magnesium supplement
FibreSmart - fibre supplement
New Chapter Organics - Unbound Energy, Multivitamins


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2831
   Posted 10/13/2007 3:37 PM (GMT -7)   
I have indeterminate colitis and am extremely interested in this test too. My case leans towards UC and in that event I am very much a candidate for a j-pouch, but I'd like more certaintly. The downside is that 80-90% is far from 100% so one is still left wondering.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/14/2007 10:05 AM (GMT -7)   
I am no expert but I was mostly diagnosed by this promesthus test w/ Crohns. My markers were over 300% positive. My doctor may be wrong because I know this test is often debated, but I was told one is a lot more likely to have a false negative then they are to have a false positive. So, if you had a negative you could keep looking but if you had a positive you could be fairly certain.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/14/2007 10:09 AM (GMT -7)   
Also, if you click that you are a patient you still get a lot of information about the tests, just in easier to understand langauge I would guess. I havent gone on the "physicians only" page but the patient page still told me a lot.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 10/15/2007 9:57 AM (GMT -7)   
Thank you to everyone. I did have the promesthus test three years ago and that was one of the
markers my doc. used to diagnose crohn's I also had ulcers in my mouth and throat which you
get with crohn's not with colitis. I had a C.T. scan in june and it did not show crohn's. A week later
I had a colonoscopy and I woke up and was told I could not go home. the doc. could not complete
my colonoscopy. I was told I needed to have my colon removed and was admitted to the hospital.
After the results of my blood test came back I was told I had no protien in my blood or the ability
to make red blood cells , my white cells were crazy. I had been taking humira once a week for three
months and it had not worked. I had to have a pic-line installed and got fed through that for three weeks
untill the surgens decided I was strong enough for surgery.All this time I am being told I have colitis not
crohn's and after the surgery I am told the test they did on the colon are inconclusive and now I need
something better than 90% to have a succesful j-pouch. How did I get so sick? My GI wanted to believe
humira was working because he had a stake in the research. He dismissed my blood work and did not
believe I was getting worse. He increased the humira to once a week. I ended up in the ER and than he
decided to listen to me. I trust the surgens more and now I just want an answer so I can get my
j-pouch and get on with my life. Having an ileostomy is fine for now and it saved my life but I want more.

Bulldog Fan
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/15/2007 10:30 AM (GMT -7)   
Fruitcake - You have definitely been through so much more than me. However, I can understand your frustration. I went to the doctor in 2005 b/c I had blood and mucus in my stool. They performed a colonoscopy and found an infected area on my colon. After the biopsy results came back, the GI told me to finish the month of Colosal and I'd be finished. WELL. about 3 weeks ago, I began to bleed from my bottom and had diarrhea. Upon doing a flexoscopy, he said I had significantly progressed. The ulcerations were all the to my rectum and uniform. He thought it was UC. I had the Prometheus 7 test done and it came back Crohn's. Now that I know the areas it can affect, I know I even have it in the back of my throat. I am set to have a oral barium test done on Nov. 9 to see what damage there may be to my small intestine.

I am so frustrated that this was not caught in 2005. Why do they seem to lean toward the lesser and not go all out to find out what is wrong?!?
Bulldog Fan


Bulldog Fan
New Member


Date Joined Oct 2007
Total Posts : 15
   Posted 10/15/2007 10:37 AM (GMT -7)   
Fruitcake - You have definitely been through so much more than me. However, I can understand your frustration. I went to the doctor in 2005 b/c I had blood and mucus in my stool. They performed a colonoscopy and found an infected area on my colon. After the biopsy results came back, the GI told me to finish the month of Colosal and I'd be finished. WELL. about 3 weeks ago, I began to bleed from my bottom and had diarrhea. Upon doing a flexoscopy, he said I had significantly progressed. The ulcerations were all the to my rectum and uniform. He thought it was UC. I had the Prometheus 7 test done and it came back Crohn's. Now that I know the areas it can affect, I know I even have it in the back of my throat. I am set to have a oral barium test done on Nov. 9 to see what damage there may be to my small intestine.

I am so frustrated that this was not caught in 2005. Why do they seem to lean toward the lesser and not go all out to find out what is wrong?!?
Bulldog Fan


Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 10/15/2007 11:53 AM (GMT -7)   
Bulldog Fan,
There is a doctor who wrote a book about how doctors diagnose patients. He said they take the first words
that explain your symptons and they instantly fixate on that. I think testing for stuff is decided by what kind
of insurance you have. It also depends on what kind of facility your doctor is affilated with. My doctor is head
of the department at a university medical school. His focus is on research and he works with drug companies
on clinical trials. I discovered drug companies support research and maybe they inflate results of clinical
trials. I had a colonoscopy done three years ago and had three different opinons on the results. I think it is
good to get a second opinon. when I started having ulcers in the mouth and throat my primary care doctor
cultured them and they came back negative for herpes or infection. GI says oh, thats crohn's. now he says
I didn't have crohn's. I had oral barium done and no signs of crohn's. bulldogs, mississippi state?
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 9:55 PM (GMT -7)
There are a total of 2,735,735 posts in 301,325 threads.
View Active Threads


Who's Online
This forum has 151428 registered members. Please welcome our newest member, livefreeinhealth.
267 Guest(s), 7 Registered Member(s) are currently online.  Details
Mews2much, Job_the_Phoenix, TitusNana, joavila92, Octorobo, Broncofan18, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer