Question for tewcute

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jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/13/2010 6:41 AM (GMT -7)   
I was reading a thread where you mentioned an immuno assay and immunofluorescence test. Can you tell me more about these tests? Were they for crohn's specifically? Were the blood tests or tests on your bipsy? Thanks!
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 4/13/2010 6:48 AM (GMT -7)   
My GI ordered them for me when I was at the hospital having my colonoscopy. Apparently when he did the procedure he saw inflammation and felt it was crohns but wanted to be 100% sure. When the nurse came to draw the blood and I asked her why she told me this would confirm for him if I had crohns. My assumption was there is something specific in this test that would conclusively tell him if it was crohns. When I went back to see the GI he looked over my biopsy from the colonoscopy and the barium swallow and then the blood work and said, yes it is definitely crohns. I had never heard of this blood test for that but I talked to my GP and another dr I know about it and they both said yes those tests could be used for crohns diagnosis. They were very expensive so insurance would be helpful. The two blood tests came to 1300.00. hope this helps!
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/13/2010 6:51 AM (GMT -7)   
I wonder if you had what they call IBD serology at Prometheus Labs. I had those and mine was positive for Crohn's. It hasn't shown up in my biopsy yet, so they won't say I have it. However, when they saw my test was positive, they ordered CT scans of my entire GI tract. The CT Scans always seem to show inflammation regardless of what they scopes and biopsies say. I hope you feel better soon. Sounds like you've had a rough time of it lately.
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 4/13/2010 7:03 AM (GMT -7)   
Thank you jeanneac! I try to keep it in perspective because there are lots of crohnnies out there that have it way worse than me. Right now I am able to control my symptoms with the entocort and hopefully being on it for awhile will help kick me out of this flare and then my maintenance meds will do their job. Mainly it has been stress worrying about different things that have come up. My sister who is a nurse practitioner calls me lovingly a walking medical freak of nature!! smile I have had many false positive tests aad I really think it is all due to the crohns. I think I dealt with the dx of crohns so well because I had already been thru rounds of testing for a false positive HIV test (which they now think was because of the crohns). Thank goodness for DNA tests for that because that was what showed as negative for me. And as my infectious disease dr told me..if it ain't in your DNA, it ain't there!! It is amazing the things the inflammatory diseases can affect! Hope everything goes well for you. This board has been such a great place for me because of caring people like you!
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/13/2010 8:29 AM (GMT -7)   
OMG, a false positive HIV test. That must have scared the crap out of you until you found out it was a true false positive! Goodness! Do you have any other health issues like RA or lupus??? Lupus is famous for causing false positive tests (especially syphilis.) These diseases are fairly common in people with crohn's.
Yea, I have a friend who tells me I need a body transplant. On the prometheus test, my ASCA antibodies were positive, so my rheumatologist did some more testing on me for other auto immune diseases again. I also have a strange under the skin rash and joint pain/fatigue. The skin biopsy said it was morphea which is scleroderma of the skin. So, I am a bit of a mess too! I am anxious to see how the tests come out this time.
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 4/13/2010 8:43 AM (GMT -7)   
It was quite a stressful month for me as they ran all of the followup tests. I would go thru periods of telling myself it will be ok, then I would just fall apart. I can't even tell you why I decided to be tested for STDS. My gyn always asks on his questionnare if you want i and something just pushed me to do it. I ultimately had 4 elisas(the inital blood test), 3 western blots which all came back indeterminate and then 2 negative DNA tests. I was sent to the infectious disease dr because even though I was false positive there was obviously something going on. He explained that the inital blood test dos not actually look for HIV. It looks for antibodies your body is producing to fight it. The bad part of that test is that it can get the antibodies confused with autoimmune diseases. My dr suspected it was false positive from the beginning because I was clean for every other STD which is unusual with HIV. Also, my white blood cell count was high, not depressed as woud be the case with HIV. He did a test for RA factor which was negative and he did a DNA test for Lupus. That came back negative also. Actually that dr was the one that suggested I follow up with a GI based on my symptoms. But of course I thought I knew better and did not. I was just so happy not to have HIV and I felt fine so I did not follow up with anyone. I won't make that mistake again!!!smile  I did not think anything could scare me as much as the HIV but I will tell you the protein in my urine was right up there. So when my gi called and said everything looked ok, but follow upwith you GP I got on the phone immediately to make an appt. It just boggles my mind all the things you get with crohns as if the crohns is not enough!!!! I was told with my barium swallow I have acid reflux (mild) as well as sacroelitis. Luckily that  has not flared up to often.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/13/2010 8:50 AM (GMT -7)   
Oh my, what a story! It's a long wait for those test results too. You must have been so scared!!! Sounds like you had a good doc to explain it all to you.
My first hubby had hepatitis C and we both had the same doc so she called me in and said I had to be tested for Hep C and HIV because they run together. It was a long time ago and I was scared sh--less for 2 weeks waiting for the results. Luckily, they both came back negative. I wanted to choke him for putting me through that. I just knew with my luck they would both be positive, but they weren't. His HIV was also negative thank God. The things some people do to themselves and their loved ones. But, that's another story.
Hang in there tewcute! Wishing you good health! This forum gives me so much peace, especially from all the nice folks on here that support each other.
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 4/14/2010 7:34 AM (GMT -7)   
thank you so much! And I am so glad your hepatitis came out ok. I know the feeling of thinking someone could have given you something. If I had had HIV I know it would have come from my first boyfriend. I have only had 2 long term realtionships (currently in the second one now) so I knew the odds of HIV were low. But I also knew it only takes one time. I am glad everything worked out for you. Lord knows we have enough on our plate to deal with!smilewinkgrin
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


will001
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/19/2012 12:00 AM (GMT -7)   
hi tewcute i have been reading you post on crohn's and i have a ? for you since i am having a big problem with some test. here is my ? in july 2011 i started having pain in my pelvis and lower abs . i was told i had prostate problem just by doing a rectal exam. i then in aug 2011 started feeling i mild burning and pain in my right side of my stomach. i was then given a ct which showed a ingunial hernia. in dec 2011 i went to the e.r bad stomach pain . blood work was done i was then told i came out hiv + on an elisa and wb. which has turned my world upside down . i went to see a infectious d doctor they did a cd4 and rna test which showed my cd4 counts are 716 and i have undetecable virus load. im also like u were worried and seriously ? the hiv test . i just went to see a gi which did a endoscopy and took some biopsy's of my stomach. i saw u posted that you had multiple hiv test and then they did another. im trying to make sense of my problem because honestly i have had no risks of contracting hiv . i have never done drugs or had sexual intercourse with any other woman but my wife which thankgod came out negative. only problem i have and continue to have is with my stomach and that's with the feeling of inflamation on my right side upper and lower. no lose bowel movements fevers etc . this is weird whats going on with me. who was your ifd doctor in what state thks.
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