Need feedback after many tests, please

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texasmama
New Member


Date Joined Jun 2008
Total Posts : 2
   Posted 7/26/2008 12:01 PM (GMT -7)   
Hi all!  I have been reading and researching while in the diagnostic process.  I am a 41 year old woman with four kids (ages 2 - 13) who is overall pretty healthy except for pernicious anemia (self injected B12 weekly for that) and neuropathy in my feet (mild to moderate pretty constant tingling in both feet).  My dad and grandmother have celiac disease (biopsy diagnosed) and my two youngest kids have gluten sensitivity/celiac disease (don't know which but we are all off of gluten). 
 
I have been undergoing testing for the past several months to try and determine the cause of my neuropathy.  I have a thorough GI doctor who has done a colonoscopy, upper endoscopy with biopsy, small bowel follow through and capsule endoscopy.  All of these tests showed no abnormalities at all.  Celiac disease has been ruled out, though I do better off gluten (no migraines or eczema any more since going gluten free) so I will remain gluten free.  My sedimentation rate was normal and all other bloodwork has been normal.  I have had extensive bloodwork done and all liver panels, CBC, hormones, thyroid, blood sugar, etc have been normal.  My blood sugar is great and I do not have diabetes or even prediabetes.  I have also had the Prometheus IBD Serology 7 testing, which indicated a pattern consistent with IBD and Crohn's Disease.  Here are my numbers from this testing (I have a copy of the results.):
 
ASCA IgA - 33.5 (normal is below 20)
ASCA IgG - 15.2 (normal is below 40)
Anti-OmpC IgA - 7.6  (normal is below 16.5)
Anti CBir1 - 21.1  (normal is below 21)
Autoantibody ELISA - below 12.1 (normal is below 12.1)
IFA Perinuclear pattern - not detected
DNAse Sensitivity - not detected
 
I would love to hear any feedback.  My doctor has told me that, although my bloodwork from Prometheus is very positive for having or developing Crohn's in the future, that he doesn't believe I have Crohn's.  He thinks I have IBS.  I don't have diarrhea very often, though I had it several times a month for several months.  I have not had it for 2 months.  I don't have any pain in my abdomen.  I ate a lot of popcorn once several months ago and had horrible pain and cramps for 10 hours and was up until 3 am until I finally had a little bit of diarrhea...but that is my only real Crohn's symptom.  Any thoughts?  Thanks so much,
 
Carol

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/26/2008 12:26 PM (GMT -7)   
I'm afraid it is pretty much a wait and see approach now, given all the testing you've been thru. Doggone Crohn's can be hard to Dx at times, especially if you have a mild, not particularly aggressive form.

You didn't mention an EMG w/NCS nor venous and arterial doppler ultrasound of your legs.

about the only thing left digestive wise would be the $149 fecal calprotectin test from Genova Diagnostics (requires the doctor order the kit first) and a nuclear WBC scan of the small intestine as far as Crohn's disease is concerned to the best of my knowledge. Neither can Dx Crohn's - but - both can and do detect inflammation in the small intestine and the WBC scan can indicate where.

IF reason to suspect Crohn's continues I'd opt for a CT Enterography once a year or every 2 years as the easiest on the patient method to detect likely Crohn's. Of course, CT scans do expose you to more radiation than xray .... and most of these tests are so darn dependent on the skill and experience of the radiologist, pathologist or scopist in recognizing early Crohn's indications. I've had locals miss it here and w/in a month Mayo Clinc radiologists find it w/the same test.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/26/2008 2:38 PM (GMT -7)   
Hi Welcome to Healing Well .I can say that a lot of us here have low B-12 and that can cause problems such as you mentioned. I did have IBS for 27 years and loads of D stools for many years. Some cramping and pain also . I would avoid popcorn as it might irritate yout bowels the way I look at it now since my crohn's diagnosis it is far better to avoid that which gives D. You might be starting out having problems so it will probably be a wait and see thing. Keep an eye on your B-12. Hope things improve for you. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/26/2008 3:06 PM (GMT -7)   
texasmama - I'm glad you joined us here! I have peripheral neuropathy. I have had every test including a skin punch biopsy that determined my neuropathy was small fiber type. My neuropathy is from my Crohn's disease. I have a couple questions for you.

What have your serum B12 levels been the last couple times they have tested it?
What type of neuropahty do you have? Has the neurologist determined if it is small fiber of large fiber?

As far as the Crohn's and the wait and see approach that C2 mentioned, I happen to agree. While your neuropathy could be tied to the possibility of Crohn's, there are many other possible causes. That is why I asked about the type you have.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


texasmama
New Member


Date Joined Jun 2008
Total Posts : 2
   Posted 7/26/2008 3:47 PM (GMT -7)   
Thank you so much for the replies so far. :) My serum B12 was in the 1600 range the last time it was recently tested so I don't believe my neuropathy is due to low B12. I have thusfar just been to the GI doc and have not been to a neurologist, though that is the next step. So I don't know what type of neuropathy I have, though from the reading I have done, I suspect small fiber from the reading I have done on it and I know that needs to be biopsied to be diagnosed. I'm sure many here can relate, but I am tired of testing and doctors and will take a little break right now before heading to a neurologist. I have been on this diagnostic roller coaster for some time now, about a year since my B12 hit rock bottom and I became very, very sick. Those symptoms are gone now, thankfully, due to the B12 injections.

What do the Prometheus test results mean, honestly? I understand my positive IgA result and the lab's interpretation but with totally normal medical testing, no evidence of small bowel damage and no real typical gastro symptoms, it seems that I don't fit the profile for Crohn's. My doctor said that this testing suggests that I have a high risk of developing Crohn's in the future due to these results. Since this one test is all we really have to go on, I am trying to understand how to interpret it. Any feedback on the Prometheus testing? Thanks again for any feedback. I want to understand as much as possible about all the testing that has been done. (It cost me an arm and a leg even with insurance, for one!)

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/26/2008 6:39 PM (GMT -7)   
That particular Prometheus test is "iffy" and just the best of a weak lot of tests that might or might not indicate Crohn's.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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