Share Facebook
Crohn's Disease Forum » Your Story » Journey to Diagnosis - Any help understanding the info I have so far?


01-04-2013, 09:09 AM   #1
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
Journey to Diagnosis - Any help understanding the info I have so far?

Hi Everybody -- I've been reading around this forum for several weeks now and have really felt good about the amount of support that seems to be out there.

I could use a little bit of help, if you all wouldn't mind. It would be so much appreciated. I am currently undiagnosed, and perhaps my mind is my own worst enemy...

Here is my journey so far!

The way its gone for me, my symptoms started 11/26/12, with diarrhea, followed by constipation the next day, and then a return to normal the 3rd day. I remained "normal" for another 4-5 days before intestinal cramps came back, which led to more diarrhea and eventually morning nausea. Over a week or two I'd have morning nausea every morning, and gradually feel better into the evenings. I lost some weight as my PCP recommended a 24-hour fast followed by 24-hour BRAT diet, but that trend hasn't really continued. At this point I received my first test results back (blood/stool), which showed positive H pylori Ab through serology. I initially had some bloating and then later hunger shortly after eating, but that's really gone away as well. I don't seem to have any classic H pylori symptoms, and haven't ever been treated for it. I know a lot of people have it and its harmless, could it be I am one of those people where the test shows positive but its not doing anything to me?

Over the next few weeks I gradually got better, bowel movements slowly moved back towards normal (1 each morning), back pain came and went away after a few days (possibly mechanical?), and with only probiotics and a better diet I felt 95-100% for about 2 weeks. My assumption of what I had started to be potentially "Post-Infectious IBS".

I did see a GI back on 12/20/12, and mentioned that my uncle has Crohn's (don't know where its located). He ran an IBD Differentiation Panel, which is what has now got me really concerned. It came back yesterday with some results that I would really love your opinion on. Since I got the results I have gone way down hill, back to diarrhea and couldn't sleep last night, which may all very well be stress related. Here are the results (performed by Quest Diagnostics):

Test Value Reference
pANCA, cANCA, atypical pANCA: Negative Negative
Proteinase-3 Antibody: Negative Negative
ASCA IgG Ab: 24.3 H <20 Negative, 20-30 "Equivocal"
ASCA IgA Ab: 16.7 <20 Negative, 20-25 "Equivocal"
C-reactive Protein (CRP): 0.10 <0.80

So the only flag on there is for ASCA IgG, which is not positive but "equivocal". I've read that healthy family members of Crohn's patients can have elevated ASCA IgG 20% of the time (though, I am a 2nd degree family member, not sibling or child). The other part that's got me concerned is the ASCA IgA as I have seen other studies that say a reference range should be <10 for Negative. GI wants to follow up with Upper Endoscopy (presumably to look for H pylori damage) and colonscopy later this month, but I think I want a second opinion (I want a different GI doc anyway). I also read that Crohn's detected through ASCA+ is generally in the small intestine anyway, so maybe colonscopy wouldn't show anything? I could be wrong, maybe ASCA+ could be anywhere.

I'd really appreciate any thoughts, experiences of similar situation, etc. that you can provide!! Maybe you can take the info here and make something of it. I know you're not doctors, but I bet a lot of you are more knowledgeable about IBD than a lot of GIs!!

Have a wonderful day!!
01-04-2013, 09:44 AM   #2
AlliRuns
Forum Monitor
 
AlliRuns's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
My understanding of the IBD panel is that they are not completely reliable and shouldn't be the sole diagnostic tool. I had one done because I have perinanal disease with no other evidence of Crohn's, so my doc ordered the IBD panel to confirm that he was on the right track for diagnosis. Mine came back positive.

Have you have any other tests done? Colonoscopy, endoscopy, pill cam, etc?
01-04-2013, 10:00 AM   #3
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
Alli, thank you for your response!

I have heard a lot of numbers about sensitivity (low) and specificity (high) of this test, but I have heard conflicting definitions of sensitivity and specificity... what does this mean in concrete terms?

I believe (if I had to guess) that the disease is in my small intestine if anywhere, as I don't frequently have diarrhea, and don't have LLQ or LRQ pain to speak of; and I plan to mention this to GI next time I see him before undergoing the colonoscopy and EGD. I may see if I can push for pill cam or barium x-ray before doing everything else first... as those seem to be the best tests for revealing disease in small intestine, and would be able to potentially catch other areas anyway.
01-04-2013, 12:23 PM   #4
Clash
Forum Monitor
 
Clash's Avatar
My son first had an upper endoscopy and sigmoidoscopy(the sigmoidoscopy was a waste of time I feel) that was normal, he was then scheduled for a pill cam but the pain got so bad they brought him in for an MRI(I didn't know about MRE at the time) which showed thickening at the TI of the small bowel. The GI cancelled the pill cam and said now that they knew the inflammation was there the colonoscopy was the way to go because they could biopsy. He was officially dx'ed with CD 3 days after the colonoscopy when the biopsies came back.

So I guess the order isn't imperative but each test has it's advantages and disadvantages. I hope you get some answers soon!
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
01-04-2013, 03:01 PM   #5
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
Thank you Clash! I will discuss potential MRI/MRE in addition to barium x-ray/pill cam/SBFT. Right now I'm scheduled for upper endoscopy & colonoscopy... I suppose upper endoscopy could check for disease activity in the first part of small intestine only, but I should probably mention that too.

p.s. I live in Georgia too, metro Atlanta. I'm fairly new here and did not like my first GI doc, if you live in the same area and you & your son like his GI doc could you send me a message? I would very much appreciate it!!
01-04-2013, 03:05 PM   #6
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
Hi. You ask some good questions. I am glad your doctor is planning on more testing. Usually the endoscopy and colonoscopies are done before a pillcam or MRE. They can get to the top and bottom part of your small instestine. I hope you start to feel better soon again.
__________________
Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
01-04-2013, 05:51 PM   #7
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
Thank you for your kind words Dannysmom!

Does anybody know more about the ASCA IgA, IgG? Or have personal experiences to share? I'm a fiend for whatever information I can get my hands on at the moment! :-p
01-04-2013, 06:10 PM   #8
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
My son's ASCA was similar to yours. His GI ordered the Prometheus IBD panel which covered additional antibody tests. His CBir1 was positive. We were told these markers alone will not give a diagnosis, but some doctors consider these evidence and we met others that think they are almost useless (at least the Prometheus ones).
01-04-2013, 06:44 PM   #9
khurram333
 
Join Date: Jul 2012
Location: providence, Rhode Island
Relax-ur numbers by no mean suggest IBD-let alone crohns. ASCA-IGG usually has higher titres in general population and it is relatively non-specific, it is mainly ASCA-IGA that matters. Regarding ur question on ASCA IGA titres-let me tell u- a negative is negative. Different labs use different elisa units as cut off value, but these are arbitrary numbers, actual cut off which is 0.2 spectrophoto adsorption is universally same. Quest diagnostics use INOVA which is highly sensitive technique, better than prometheus.

Now ur CRP is 0.1 mg/l. I have seen people with crohns with normal CRP, but never that low. As a matter of fact a big study in England concluded CRP LEVEL < 2.5MG/L IN PATIENT WHO IS NOT ON ANY TRETMENT, but has symptoms, is good enough to rule out crohns.

And lastly ur calprotectin is low, I dont know ur numbers, but if less than 15.6 mcg/g just forget the diagnosis of Ibd

Just for comparison, my CRP IS 5.2 MG/L
Calprotectin 158.1
ESR 22
mild anemia
Alot of kidney stones
Still my GI is not giving me diagnosis
01-04-2013, 06:52 PM   #10
Hobbes650
Forum Monitor
 
Hobbes650's Avatar
 
Join Date: Jun 2012
Location: Burlingame, California
My understanding of the IBD panel is that they are not completely reliable and shouldn't be the sole diagnostic tool. I had one done because I have perinanal disease with no other evidence of Crohn's, so my doc ordered the IBD panel to confirm that he was on the right track for diagnosis. Mine came back positive.

Have you have any other tests done? Colonoscopy, endoscopy, pill cam, etc?


Exactly. Inflammation from IBD may not show up on the blood work. Also, no such thing as coming up positive for IBD. Technically, the best anyone can ever say is it "looks like" because the cause is still unkown. But you can rule out other things which is what the tests attempt to do. Scopes or pill cam are the best tests one can have before getting diagnosed with IBD.
__________________
Hobbes650

Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
01-05-2013, 01:07 PM   #11
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
Thanks for the info y'all. I should specify that my CRP was 0.10mg/dL, so 1.0mg/L, still pretty low. I wonder if it can be that low if Crohns is in remission? I was reading something about it having a short life, and I wasn't really at my worst on the day I had the test done.

I have not had my calprotectin tested but I will ask for that, it seems to be a very good marker, from what I have found here and other studies.
01-07-2013, 03:53 PM   #12
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
Hi everybody, thought I'd provide an update.

Been feeling overall better the last few days, but still rough as a rusty nail in the morning. Got my GI appointment moved up a few days as well!

I also went back and looked at previous test results (about 1 month ago now) and noticed I had been tested negative for any fecal leukocytes. From what I can tell this is somewhat related to fecal lactoferrin levels, but I can't tell if the tests are fairly interchangeable, or have the same predictive powers, etc? Was wondering if anyone had insight on correlation between fecal leukocytes and fecal lactoferrin levels?
01-07-2013, 09:20 PM   #13
dannysmom
Forum Monitor
 
Join Date: Oct 2010
Location: NY

My Support Groups:
More good questions. I also think the fecal calprotectin, leukocytes & lactoferrin may be similar. I am glad you are feeling a little better and hope you continue to improve.
01-07-2013, 09:56 PM   #14
khurram333
 
Join Date: Jul 2012
Location: providence, Rhode Island
Fecal leucocyes are 27-58% sensitive for colitis(depending on what study u look at). Lactoferrin and calprotectin are both products of Neutrophils. Absence of leucoytes is definitely a good sign, but does not correlate well with calprotectin. I think it is also true for lactoferrin. In your case, I think u can ask ur physician for calprotectin (at least three tests at few weeks apart). If all of them negative, just enjoy ur life and concentrate on ibs
01-10-2013, 12:56 PM   #15
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
Great news! I got my colonoscopy moved up to next Thursday, which is only 3 days after my office visit to have some blood and stool tests and discuss cscope prep! The last week has been pretty stressful just waiting and worrying...but I'm happy to say I'm feeling close to getting an answer! (maybe...I also worry that they'll find nothing wrong)

Looking forward to posting back in a week - in a much better place than I'm in now.

Thank you to everybody for their support.
01-17-2013, 02:36 PM   #16
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
It's been a week - and I can honestly say I'm in a much better place, at least mentally. I had the blood work done last week and results should be in tomorrow, and had colonoscopy/EGD today with no abnormal findings, I should expect biopsy report in 2 weeks. Good news so far, I suppose.
01-18-2013, 09:03 AM   #17
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
Hi - I'm glad to hear things are going well.

This might sound like an odd question, but are you hoping for a Crohn's diagnosis? It actually seems to be really common for people to want tests to come back positive (I know I did when I was in the process of being diagnosed) because they've accepted they feel ill and want to know why.

If your symptoms aren't bad, then negative tests are usually what you want to end up with. But if you know you're going to carry on feeling bad, you want a diagnosis so you understand what's happening and treatment can hopefully start.

The scopes and biopsies should provide you with more information and it sounds like you will be getting some more answers soon.

How are your physical symptoms? Whatever you end up being diagnosed with (or even if you don't get a concrete diagnosis just yet), make sure your doctors have a plan to help as much as they can with keeping you feeling as well as possible.
01-18-2013, 05:48 PM   #18
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
My physical symptoms are usually pretty rough in morning (several BMs, fatigue, cramps, sometimes nausea) and more manageable in the evenings. Have lost about 15lbs in 2 months. My uncle also has Crohn's so I felt it was a real possibility.

I re-read the report from my scopes yesterday. Says there was signs of gastritis and was biopsied. Seems to go with my recent finding of H pylori.

I got my Prometheus sgi results back today. It said "pattern not consistent with IBD". I have all 4 of the genetic markers though. I don't know if that is supposed to confirm I'm related to my uncle or I'm at high risk of developing Crohn's later. My anti-CBir4 was also at 82.3 with a reference of <78.4.

Ho hum...I guess I just want peace of mind.
02-04-2013, 06:48 AM   #19
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
I received my results from the biopsies last Thursday - and doctor says it does not look like Crohns... He did find gastritis and gave me Nexium, but no evidence of h pylori which I originally tested positive for. I guess gastritis can lead to stomach cramps and whacky bm's?

Coupled with the negative Prometheus sgi, negative blood work for inflammation and mineral deficiencies, negative stool sample, and a fair resolution of symptoms (except I shouldn't have had those hot wings during the Super Bowl last night...) I guess it's really not crohns? I guess I have to feel satisfied that its not, maybe it's IBS. The only thing that hasn't really been checked out is my small intestine...

Don't know really...would you be satisfied? What would you do next? I remember Dusty once said dont stop til they prove its not crohns.

Ps if its really not crohns I hope I don't get kicked out of here - I really quite like the people I've met and think I can offer good advice to others still! I feel like I've gotten my phd in ibd's the last few months...

Last edited by Lustforlife; 02-04-2013 at 07:10 AM.
02-04-2013, 08:13 AM   #20
Sybil Vane
Forum Monitor
 
Sybil Vane's Avatar
 
Join Date: Nov 2011
Location: Virginia

My Support Groups:
Has your GI brought up IBS and some things that could help with your symptoms? Bentyl really helps with stomach cramps and spasms and I believe that's given to folks with IBS. There are other anti-spasmodics as well. I would definitely ask him what he suggests to help with your symptoms because IBS isn't fun.
__________________
My real name is Christina and I write about my personal experiences fighting and surviving Crohn's disease on The Diarrhea Diaries at LivingSick.com.

If you're on Facebook, please join me for daily silliness, inspiration, and IBD in the news at http://www.facebook.com/TheCrohnsDiaries.



"Cats: Because sometimes they really help you."
02-04-2013, 09:00 AM   #21
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
I received my results from the biopsies last Thursday - and doctor says it does not look like Crohns... He did find gastritis and gave me Nexium, but no evidence of h pylori which I originally tested positive for. I guess gastritis can lead to stomach cramps and whacky bm's?

Coupled with the negative Prometheus sgi, negative blood work for inflammation and mineral deficiencies, negative stool sample, and a fair resolution of symptoms (except I shouldn't have had those hot wings during the Super Bowl last night...) I guess it's really not crohns? I guess I have to feel satisfied that its not, maybe it's IBS. The only thing that hasn't really been checked out is my small intestine...

Don't know really...would you be satisfied? What would you do next? I remember Dusty once said dont stop til they prove its not crohns.

Ps if its really not crohns I hope I don't get kicked out of here - I really quite like the people I've met and think I can offer good advice to others still! I feel like I've gotten my phd in ibd's the last few months...
When I had an upper endoscopy they told they found gastritis caused by reflux, and inflammtion in my eosophagus from reflux too. I did a bit of reading about it and don't remember gastritis being a cause of diarrhoea. It's more likely to cause stomach pain like indigestion or heartburn, or those symptoms can be caused by the reflux that leads to the inflammation in the first place.

I think Crohn's can be limited to the small intestine in some cases.

I'm sure you won't get kicked out for not having Crohn's. I seem to end up talking about my other health problems as much as Crohn's on here, and whatever it is that's wrong with you you'll still need a place to talk about dealing with chronic illness and you'll be able to help other people here by sharing your own experiences of tests, symptoms and treatment of digestive problems. Maybe you could find an IBS forum as well? Perhaps people on an IBS forum would be able to answer some of the questions you have now?

I'm not sure if you've mentioned this earlier in the thread, but how was the gastritis diagnosed? Wouldn't you need an endoscopy to do that, which would mean they've already seen your small bowel? Or was a scope done that didn't go further than your stomach?
02-05-2013, 07:30 PM   #22
Smax
 
Join Date: Jan 2013
Lustforlife, I'm curious do you have any pain when you press down on your stomach in particular areas?
I'm asking because I'm also in the undiagnosed category and suspecting crohn's but awaiting further testing.
02-05-2013, 08:57 PM   #23
Lustforlife
Senior Member
 
Lustforlife's Avatar
 
Join Date: Dec 2012
Location: Georgia
Right now no, but when I have had pain its mostly LLQ, and occasionally LRQ but much duller. While having pain is very common in Crohns (see my poll "what symptoms are common for you?"), having Crohn's isn't very common with pain, if that makes sense. As for IBS vs IBD, the pain can be very similar.
05-11-2013, 11:17 AM   #24
charlottevet
 
charlottevet's Avatar
 
Join Date: Apr 2013
Location: Preston, United Kingdom

My Support Groups:
Alli, thank you for your response!

I have heard a lot of numbers about sensitivity (low) and specificity (high) of this test, but I have heard conflicting definitions of sensitivity and specificity... what does this mean in concrete terms?

I believe (if I had to guess) that the disease is in my small intestine if anywhere, as I don't frequently have diarrhea, and don't have LLQ or LRQ pain to speak of; and I plan to mention this to GI next time I see him before undergoing the colonoscopy and EGD. I may see if I can push for pill cam or barium x-ray before doing everything else first... as those seem to be the best tests for revealing disease in small intestine, and would be able to potentially catch other areas anyway.
sensitivity = number of people with the disease that tested positive
specificity= number of people without the disease that tested negative
Reply

Crohn's Disease Forum » Your Story » Journey to Diagnosis - Any help understanding the info I have so far?
Thread Tools


All times are GMT -5. The time now is 12:34 AM.
Copyright 2006-2017 Crohnsforum.com