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Lupus or Crohn's , Crohn's or Lupus?

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Posted 4/14/2008 5:38 PM (GMT 0)
I just received in the mail today correspondence from the new Johns Hopkins Dr. I am curious to see if anyone here has any idea of her possible thought process.

She states in her letter that she received pathology results showing cecum with active chronic colitis without displasia or granuloma. The specimen from the IC valve shows focal active crytitis without granuloma. The colonic mucosa reveals mild crypt distortion , depletion of goblet cells, acute crytitis. There is diffuse inflammatory infiltrae consisting of lymphocytes, plasma cells, macrophages, and eosinophils in the lamina propria. Again no dysplasia no granulomas.

She states she discussed this with her GI fellow and was told that the pathology is not diagnostic of CD but suggests IBD. She would want to confirm via small bowel series ( which I had done an showed nothing ) . They feel the pathology suggests IBD but not clearly CD.

My Gi Dr ( not from the Lupus center ) clearly defined I do not meet any of the criteria of UC. What would the Lupus Dr. be looking for if not IBD? When I told her I had a Dx of IBD she was not content to believe me and requested proof of biopsy. Even with that proof she seems to have a hunch of her own. I looked up Lupus in the gut and it is represented by vascular disease of which none was seen in the pathology report. What am I missing? What else can go wrong in the gut as related to Lupus? Anyone here sick of trying to be their own physician? I am clearly growing weary. I have painful urination yet again and more WBC and RBC  and proteinuria that comes and goes at will. The BUN and CBC came back normal. That would show kidney disease is there were any. I also do not have high blood pressure which is an indicator of kidney disease.

Posted 4/14/2008 7:57 PM (GMT 0)
Maybe collagenous colitis or lymphocytic colitis?
Posted 4/14/2008 8:15 PM (GMT 0)
Thanks writer!!!! going to go explore that online
Posted 4/14/2008 8:23 PM (GMT 0)
The symptoms of collagenous colitis and lymphocytic colitis are the same—chronic, watery, non-bloody diarrhea. Abdominal pain or cramps may also be present. People with collagenous colitis and lymphocytic colitis may suffer from ongoing diarrhea while others have times when they are symptom free

I found this on the CC foundation . I do not fit this profile. I had severe lower right quadrant pain with 75 lb weightloss and months of constipation. The stools showed marked inflammatory response but thank you very much!

I didnt know there were 2 other forms of IBD so that was very knowledgable info!

Posted 4/14/2008 9:26 PM (GMT 0)
I know what you mean about being one's own physician...

Significant weight loss can be caused by thyroid issues e.g. Grave's Disease... this can happen to people with Lupus, maybe that is worth checking on if it hasn't been yet?

Regarding GI issues I will just throw out there: eosinophilic colitis; intestinal endometriosis; or an intestinal pathogen such as actinomycosis, brucellosis, intestinal tuberculosis, disseminated histoplasmosis etc. Some bacterial pathogens in particular will seek out the ileocecal junction and if you are immunosuppressed as treatment for lupus this could be a possibility.

Also will just throw out there I have Crohn's at the terminal ileum but the worst LRQ pain I personally experienced was from a large ovarian cyst...went on for two months till it finally ruptured... Now THAT hurt. If you've already had an abdominal/pelvic CT or ultrasound that would have ruled out this possibility.

Posted 4/14/2008 11:56 PM (GMT 0)
Thanks Illini I am looking it up.
Posted 4/15/2008 2:20 AM (GMT 0)
Does anyone here have Lupus and CD and if you do, how the heck were they able to properly diagnose the Lupus aside from the butterfly rash on the face. Some lupus patients don't have this rash and the symptoms as far as joint pain, fatigue & fever run hand in had with CD.
Posted 4/15/2008 2:25 AM (GMT 0)
yep, started with the remicade thing, but this kind of joint pain I could not walk. To bear any weight on my feet was something terrible. I honestly thought I had refractured my feet, but they were not unstable.
Posted 4/15/2008 2:33 AM (GMT 0)
Hey Navy...been awhile seen I've heard you around. I didn't realize you had Lupus too! I understand the weight bearing thing. I'm beginning to wonder if I have any cartilidge left in my right knee. I've had an adhesion in my left shoulder already. Bad burning muscle pain in my neck. SI pain that runs down my legs and achy, stiff, painful hands...especially the last two digits in both hands. Had alot more migraines lately too. Up for my 1st Rhuemy visit in May any suggestions?
Posted 4/15/2008 2:48 AM (GMT 0)
get the ana test done, mine was high and I just flat out hurt to move sounds like what you are going thru too...
Posted 4/15/2008 10:56 AM (GMT 0)
Hi Chaya,
I would recommened getting a second opionion it nevers hurts.

teddybear
Posted 4/15/2008 11:27 AM (GMT 0)
Chaya,

You might consider looking into Celiac Disease or Gluten Sensitive Enteropathy. Lymphocytes and Eosinophils are the predominant inflammatory infiltrates in these conditions. An easy test can be found by searching "Enterolab" - I'm a satisfied customer, no financial interest in this company.

Infectious etiologies are also a possibility, as posted above. And you might consider looking into Lyme Disease - it can affect the gut and look exactly like IBD. And Lyme can cause Gastroparesis, bladder symptoms, elevated ANA, elevated ESR, etc. There's a pretty good Lyme forum here at HealingWell with a lot of good info and smart people. Here are some website links to get you started:

What does Lyme Disease has to do with Digestion?
http://www.revolutionhealth.com/blogs/trentnicholsmd/what-does-lyme-diseas-4297

The ABC's of Lyme Disease, page 2, "Gastrointestinal Lyme"
http://www.lymediseaseassociation.org/ABCsLYME.pdf

Crohn's, Colitis, and Lyme Disease
http://www.canlyme.com/crohn's.html

The Physician as a Patient: Lyme Disease, Ehrlichiosis, and Babesiosis
http://www.ilads.org/sherr2.html

International Lyme And Associated Diseases Society
http://www.ilads.org/

Lyme Misdiagnosed as Lupus
http://www.geocities.com/HotSprings/Retreat/1593/lupus-patients.txt

Lyme Info - lots of links and information here
http://www.lymeinfo.net/

Yes, I'm the same "Razzle" from DP, LOL. Take care,
Posted 4/15/2008 12:37 PM (GMT 0)

Razzle,

    Joan and I joke about the Lyme's deal daily at this point in time. Its like disease of the day! They have tested me enough for it. Seems like first line test. The Lupus question was on the horizon looooong before IBD even became a though process. I was tested for Celiac disease and I do not show any gluten sensitivity. That was a question well expored from the days of DP. I suppose I am curious to see how Lupus can mimic IBD and have received alot of info on HW the last 24 hours. Since the biopsies do not show any vascular type disease I would have to say I am content with the IBD Dx as it stands today rather than it being Lupus related although maybe the infectious route has some merit. I dont think its a simple answer no matter how its looked at . Some of this stuff seems to require time and eventually the body will give up its secret.

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