Chronic Diarrhea, No Diagnosis

[SamTheMan]

I've now had diahrrea (very frequent bowel movements, 4-8X day, often flaky dissolving upon entering the water, sometimes formed but loose, and ocasionally but not often watery) for 8 months and running.
I am really frustrated because I've had extensive GI tests which were negative:

1. colonoscopy with biopsies- negative (but exess bile found in stomach)
2. endoscopy-negative (but showed severe acid reflux/hiatus hernia)
3. small bowel ex-rays-negative
4. CBC- normal counts
5. HIV test- i had done early on and was told it was negative though this was before all these diahrreal symptoms happeneed (though i have NOT has sexual intercourse b4 or since, am not a drug user, have not had transfusions).

here are some things that DID show on my tests:
1. Sonogram showed-Gall stones
2. Hida Scan showed what my Dr. said was anonfunctional gall bladder
3. I tested ASCA positive for IGG (62) and IGC (58.1) -but what does this mean with all my negative biopsies??

I also took cholestyramine for the Bile found in my stomach which my dr said was from the GB problem. it did not help the diahrrea.
Early on i also tested positive for e. hystolitica which i later tested negative for after treating with metronidazole etc, yet the diahrrea persisted.
My intestinal biposies were all negative and my dr. said it likely wasnt crohn's because i has no elevated white blood cells in my stool and also my biopsies were negative.
At first my Dr. said i tested positive for celiac/sprue marker but then the biopsies (what he called the "gold standard") were negative for that. also a non-gluten 2 week diet didnt help me.

my continued diahrrea and recent symptoms continue to make me very worried about my situation and even HIV because u have had some difficulty breathing for the past 3-4 weeks and every time i type diahrrea into the internet HIV comes up as the main cause. but i really should not be a risk for this and I DID test negative! plus my lymphocite #s were normal according to my new GI and yet even he asked me if i had been getting mouth sores and/or rashes! (why would he ask this haveing seen all my tests?!)

so i dont know what to do. this just cant be IBS. its too consistent, always is diahrrea (not constipation), and i just know its not. can you help me? do you have any ideas? where do i go from here? does anything jump out at you from my tests as to what this might be?
Amazingly I have not been losing weight AT ALL. not a pound. nor do i have fevers (actually my fever is usually LOWER - like 97.5, is that meaningful?). my muscles esp in my upper arms are often sore. what should i do? repeat any of these tests? take another HIV?? some nights i do get sweats on my neck and back!
Please tell me what you make of all these tests and symptoms?
what should i do? what could this be?
PLease, please help.
Sam

[SamTheMan]

Sarikate,
   Do you by any chance live in NY? I'm womdering if you'd be willing to talk to me. your eperience and kindness has been so helpful to me i cannot even tell you what its like to speak to someonme who knows what i'm going through. i know im a stranger to you, but if you like we could email or IM so you can see I (if not my colon) is normal.
Your intuition (and perhaps medical background) are good--- my first GI thought it was the gall bladder because he explained that since it was nonfunctional, bile was escaping into the intestines and caused the diahrrea. however, he gave me meds for the bile (cholestrymine) which did not work and so he thought the diagnosis may not be right as that being the cause. i have had 3 opinions. one dr. just say "IBS" without even bearly looking at all my tests. the first one didnt diagnose anything because he was baffled. and now my 3rd dr. the most caring, said he couldnt understand how the other doctors could not pursue crohns after seeing a positive ASCA. so he gave me a capsule endoscopy of which i am still awaiting the results, but i suspect that they didnt see anything on it because the dr has had the results for days and hasnt called me to tell me what they are. i bet they found zip and i am back to square one. :-)
thanks for your input again and please let me know if you can chat...
sam

[sarikate]

Hey Sam, we Jews always seem to get the raw end of the deal, don't we? :) African-Americans have the same problem with sickle-cell anemia.  

I'll try to explain the osmotic gap as best I can...keep in mind it's still very confusing for this pre-med.  Basically, your doctor can tell whether you are absorbing electrolytes or not based on results from blood tests and subsequent stool tests.  If your doc finds an excessive amount of electrolytes in your stool, that means you are not absorbing them and the diarrhea is categorized as secretory - your osmotic gap will be quite small.  If your doc finds that your electrolyte levels are normal in the stool, your diarrhea is osmotic.  This is generally caused by carbohydrate malabsorption (such as lactose or sorbitol intolerance) or laxative abuse.  In this case your osmotic gap would be large.

When my doc did this study for me, he found a negligible osmotic gap.  Usually, secretory diarrhea is caused by bacterial or viral infections.  When you get "traveler's diarrhea," for instance, it is secretory.  You're not absorbing electrolytes.  However, chronic secretory diarrhea is a little more difficult to pinpoint.  There are many causes for it.  IBD can cause it, and so can IBS.  My doc has ruled out an infectious process and does not think it is IBS.  So now he's in the process of checking for the presence of a host of neuroendocrine tumors, a more rare cause of this kind of diarrhea.

In the meantime, I just make sure to drink plenty of fluids when I'm having a bad day.  I've ended up in the ER twice because I can't keep them in and become severely dehydrated; however, this is the exception, not the rule.  

Did you doc say anything about your gallbladder causing these problems?  Have you thought about a second opinion?

[SamTheMan]

shen,
appreciate the feedback and link, but my iron's normal....

[SHEN]

Have you been tested for iron deficency?
Check this link it maybe of interst to you

http://polish-jewish-heritage.org/Eng/July_04_Jerusalem_Post_online.htm#

[SamTheMan]

Sarikate,
   thanks so much for your comments, they are really appreciated. no blood in my stools and not much abdominal pain, though every few months (maybe 5 times year) i will get am AWFUL stomach ache hours after i eat. but this is so infrequent that i always thougt it was unrelated.
Medications- not really, i have tried pentasa (dont thnk it worked) and now am trying Xifaxan which some days i think helps and others not. Thanks for the comment on the temperature-- i was thinking that a consistentely low temp meant something about the immune system, but i didnt know what. i wonder if its significant that both you and i have low temps. it wasnt long ago that i  did avg a higher 98.6-type temp. i rarely reach that high now.
What is the osmotic gap? what does that mean, i enever even heard the term and non of my docs mentioned it. howveer the weird part is that im not losing ANY weight, so i doubt its from malabsorption. plus my GI actually told me after one of my vistits that my colon did not have absoprtion problems. does this mean he did that osomotic gap test?
i've never been lactose intolerant, though i do have many allergies, so thats intriguing....
i think i actually did have a cat SCN whicg showed now inflamation or was otherwise normal.
i did have those positive blood markers but for the reasons  i was saying above, my doc ruled out disease because of the negative biopsies. so im racking my brains as to what the positive ASCA could mean. and the posityive hida scan. it can drive u nuts!!!!

my diahrrea is not watery. not normally. it is often powedry which i find odd. but id ont feel like im losing fluids. partially bec of the weight maintenance.

thanks so much for your input, it means So mych to me. incidentaly, i am also jewish (but male) and around your age. i have read these GI diseases are more prominent among ashkenazi jews.......

sam

[sarikate]

Sam,
Chronic diarrhea is one of the most difficult things to pinpoint a cause for (and I know that personally!).  Do you have any abdominal pain?  Any blood in your stools?  Are you taking any medications at the moment?  Your temperature of 97.5 is normal; anything from 97-99.5 is considered normal, and can fluctuate during the day.  I usually hover around 97.5 as well.  If they try to calculate an osmotic gap from stool and blood samples, it can help in differentiating whether your diarrhea is caused by malabsorption due to a certain food (such as lactose intolerance) or not.  

But you had positive blood tests for Crohn's.  Dr. Pho should be able to tell you how sensitive and specific those tests are.  I wonder whether your gallbladder might the root of, or part of, the problem.  They might do a CT scan so they can visualize your abdomen to see if there are structural abnormalities.  

In the meantime, try taking an Imodium every morning to see if that helps the diarrhea, and if it doesn't, ask for Lomotil - this works best for me.  If it's watery diarrhea, make sure you're drinking enough fluids, but make sure they are not too sugary, since sugar can exacerbate diarrhea.  Gatorade diluted with water is a good bet, or Pedialyte from the drugstore.  

I totally sympathize with you!  Keep us updated.