Extensive work-up, no answers

[sarikate]

I am a 26-year-old Jewish female who is headed off to medical school next year.  My doctors and I are stumped as to what may be causing these problems!

Symptoms experienced since January 2005:

35-pound weight loss
Frequent diarrhea (~60-75% of the time)
- Usually voluminous, watery, without blood
- Occasional mucous
- Can be up to 25x/day; usually between 3-10x/day
- Generally resolved with Lomotil, but some episodes haven’t responded
- Occasional normal BMs (semi-formed)
- No constipation
Occasional fevers (6-7 total; 3 over 101 degrees) with chills
One episode of mouth ulcers
Frequent abdominal pain (usually mid-abd. and RLQ); can be extremely debilitating
- Generally crampy pain
- Usually responds to dicyclomine (taken up to 4x/day)
- Occasional sharp, stabbing pains in URQ (below ribcage)
Nocturnal awakenings with pain and/or diarrhea (more than 5 times)
4-5 episodes of night sweats
Peripheral neuropathy
Acid reflux that generally resolves with Pepcid Complete
External bleeding hemorrhoids
Occasional nausea

History of travel to the following countries: Germany, Austria, Czech Republic, Slovakia, Netherlands, Hungary, Jordan (1996); Russia (1998); Ireland (2000); Tanzania and Kenya for semester abroad (2000) – and Ecuador, Peru, and Bolivia (2003)

Experienced episodes of severe, watery diarrhea (>30x/day) and abdominal, high fevers, and vomiting in Africa and was treated with metronidazole three times, as well as quinine (despite negative malaria blood smear)

Experienced episodes of severe diarrhea and abdominal pain (no fever) in South America for approximately three weeks, treated with metronidazole.  Also had red, linear rash on leg during that time.

Work-up:

Small bowel follow-through – indicated “prominent folds in descending duodenum with possible nodularity” - barium present in colon within 20 minutes
Colonoscopy with biopsies (negative)
EGD with biopsies (negative)
Capsule endoscopy (normal with “residual vegetable matter” obscuring small portions of intestine) - small bowel transit time of 5 hours, 30 minutes

Blood tests:

CBC (normal)
Sedimentation rate (normal)
Giardia antigen (negative)
Strongyloides antibody test (negative)
B-12/folate (normal)
BMP (normal)
HIV (negative)

Stool tests:

Fecal leukocytes – moderate leukocytosis
O&P (negative)
Cultures for bacterial infections (including Shigella, Campylobacter, Salmonella, Giardia, etc.) (negative)
Fecal fat (normal)

Diagnosis is elusive; first GI dx’ed IBS, second has not yet reached final diagnosis.  ID doc believes severe lactose intolerance or intestinal walls damaged from repeated parasitic infections while traveling.  I have been taking Lomotil and Bentyl with moderate effectiveness but continue to lose weight and have occasional fevers/night sweats.  My docs have thought about sending me to the Mayo Clinic...does this appear necessary?

[Kevin Pho, MD]

You have certainly had a comprehensive workup.  The prominent folds in the small bowel can be a presentation of Crohn's disease.  Although the capsule endoscopy was non-revealing, you can consider some antibody tests for further evaluation.  These can include the P-ANCA and ASCA antibody tests.

Another consideration can be celiac disease, which can be evaluated with an IgA endomysial antibody test.  

If the workup continues to be negative, then IBS can be considered.  You have already been taking antispasmodics like Bentyl.  A referral to a tertiary care facility like the Mayo can be helpful in consideration more specialized diagnoses.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
http://www.straightfromthedoc.com

[Inanga]

here's a possibility: celiac disease or non celiac gluten sensitivity. in celiac disease the GI linings are damaged which causes malabsorbtion and malnutrition -> wieght loss. IBS-like symptoms are also classic problems. It's worth considering - even if a biopsy to look for celiac damage is negative you might still have a sensitivity problem - get the doc's opinion and try a gluten/wheat/dairy free diet for a few weeks - it did wonders for me - O had mild IBS-like symptoms and respiritory mucous (bad post nasal drip) from food "allergies" and also I have discovered recently that bananas and melons give me problems (real allergies). all the best.

[sarikate]

Thanks for the comment, I was tested quite thoroughly for celiac disease with EGD biopsies, blood work, etc. and was told I do not have a gluten sensitivity...I suppose I could try the diet for a couple of weeks to see if it helps!  Also, I tried a 2-week lactose-free diet that did not seem to help the symptoms.  I am currently waiting for results from a 5-HIAA test for a carcinoid tumor.

[Biskie2]

Metronidazole may be to blame - were you replenishing your gut with good probiotics during or after taking the medicine? I had a reaction to the drug (i.e., diahrrea,etc.) and once it was out of my system, I was fine. Another thing is that your immune system may be overactive with all of the battles it has had to fight, you world traveler you! Good luck!

[astros18]

There are many types of parasites in this world and some that do not show up in typical tests here in USA. Medical protocal is usually ineffective for parasites. Sounds like to me a good colon cleanse and strong probiotic will help you feel better. Good luck.

[sarikate]

I think my colon is cleansed naturally every 4-5 days or so, when I end up having 30 bouts of diarrhea!  I have been taking acidophilus and eating yogurt with active cultures for quite a while now...I've tried Benefiber powder (worst idea so far - I was in agony for two days afterwards!), peppermint oil capsules, ginger tea, etc.  Seven months later and 35 pounds lighter, I'm nearly to the end of my rope!

[Biskie2]

Have you been checked for C-Diff?  See website: http://www.cdc.gov/ncidod/hip/gastro/ClostridiumDifficileGEN.htm

[sarikate]

Yup, at least three times - all negative for C. diff.

[Biskie2]

Try eliminating all milk, cheese, dairy products - read all labels carefully. I am lactose intolerant too and the slightest thing with milk, cheese, etc. makes me go 10-15x day. Try this in conjunction with the Immodium /Lomotil - (you may want to increase the dosage of that) and see how you feel - give it about 4-5 days. That's how long it takes to recover (for me, at least).

[sarikate]

I got a call from my GI today, who informed me that I have a very low osmotic gap, indicating secretory diarrhea...thus it cannot be attributed to lactose intolerance or any other food intolerance.  Now he wants to test me for a host of tumors.  This is crazy.

[diamond79]

Have you had an ultrasound done for your gallbladder to check for stones or inflammation since you mention RUQ pain? Or Hida Scan?
Gallbladder problems can cause nausea, diarrhea, RUQ pain and alot of other symptoms.

[Biskie2]

The osmotic gap you have may also be from decreased blood flow or inflammation - I hope no tumors are found.  Have you used laxatives in the past year?  I also know that malabsorption could be a cause...let us know what you found out after they explore it further. Good luck.

[sarikate]

Biskie, malabsorption is a cause of osmotic diarrhea.  Secretory diarrhea, in which there is a very low osmotic gap, is different in that it is not related to any malabsorption syndrome.  Osmotic diarrhea, in which there is a very high osmotic gap, can be caused by laxative use or malabsorption from foods.  At least when they discover which type of diarrhea you have, it eliminates certain possibilities...so at least now I know I can eat ice cream and it won't change the way my body feels!  Still, I'd rather be lactose intolerant than tumor-riddled!  I'll let you know how it turns out.  Thanks for all the comments/suggestions everyone!

[astros18]

I had diarreah for over a month with no end in sight.It wasn't until I did a colon cleanse that it finally stopped. I know people think because they constantly go to the bathroom that their colon must be clean,but having chronic diarreah is a symptom of a very toxic colon.Whatever you find and try I hope it works out for you. I know how horrible it is to feel so badly and basically unable to do much because you need to know where the first available toilet is.

[Biskie2]

If what Dr. Pho says is correct, that the folds can be a presentation of Crohn's, then that may explain all the loose bowels, sweats, chills, etc. I have Crohn's and take Immuran for an overactive immune system, occasionally Lomotil, and it has worked pretty good for about 6 years now. When was your colonoscopy performed - how long ago? Do you live closer to Mayo or the Cleveland Clinic? Both are good, but Uof Chicago is very well known for Crohn's and complications of it, etc.

[SHEN]

You have spent alot of time looking for a link for physical causes. Are you open to looking at that these symptoms are classical  signs of fear and anxiety.

You are going off to Med school, how is this affecting you?

Step back as an observer with a netural stance and see what is going on in the 360 degree circle.

[sarikate]

Shen,
There is a very negligible chance that one can lose 35 pounds, have recurrent fevers, watery diarrhea 30x/day, and an elevated white blood cell count as a result of a bit of anxiety.  Some of the other symptoms alone can certainly be caused by stress.  I thank you for your input, but have ruled out that option, as have my doctors.

[SHEN]

For general information.

Weight loss and diarrhea have to be looked at from a time perspective.

Lower level Anxiety or stress induced weightloss is usually less and is spread over a longer period of time than an active disease.

You started your bout Jan 2005 to present. That about 30 weeks.
The result is an average of 1 pound per week. This is more gradual than not.

Weight loss from not absorbing food or water is much more if you are having diarrhea every day.

Water weighs almost 8 lbs per gallon.

You also did not mention dehydration as a steady occurrence. Which may indicate only small amounts of water are being lost per episode.

Also there are many studies out there that show stress causes lower immune function and so it is common for infection to be present with stress.

Hope you find your answer to good health soon, Good Luck

[sarikate]

Shen,
There is always a mind-body connection in any illness.  Having done neurosurgery research for years, I understand how somatic symptoms can arise from increased neurotransmitter release or a host of second-messenger systems during periods of stress that lead to altered sensation/perception or physiological changes in the body.  So technically there is a neurological component to any illness.  Sure, people are more susceptible to upper respiratory infections or other minor infections when they are stressed.  People are prone to get stomachaches and headaches when they are stressed.  And some people lose weight when they are stressed because they are not eating as much.  But I would argue that a 20% reduction in body weight (which actually occurred over a period of 4 months) without any change in diet, in conjunction with unexplained fevers, night sweats, nocturnal diarrhea and pain, leukocytosis, severe dehydration (a point I did not mention in my original post, but has warranted two ER visits and morphine to stop the diarrhea) and bowel wall thickening is alarming; I am an otherwise quite healthy, very athletic young woman.  I am all about treating a person wholely, not just covering up symptoms with drugs, and trying alternative therapies.  I also don't like over-using our medical system, despite having insurance, because it raises healthcare costs overall and I am an avid proponent of making sure healthcare is affordable for everyone.  And trust me, I definitely thought it was stress-related at first, which is why I waited two months to see someone about it.  But, I'm doing what I need to do at this moment.  I thank you for your points, they are duly noted.  Cheers!

[SHEN]

In regard to your weight loss.
You say you are athletic and have had no change in diet.
One part of your weight loss could be from using up and or  losing more calories than before you were sick.
Between the diarrha, possible lost sleep from your nightime issues and the energy consumed to fight your sickness you are running lean. Try to add fuel to your diet, you are in Battle mode!!!

Have you researched all the meds you took in foreign places for possible quality issues or substitutions. Toxins could be present. Look for latent effects,years may have to pass. Check for effects caused by taking combinations of meds.

Any genetic predisposition to toxicity from metals, chemicals or meds you many have been exposed to or in your present enviroment.

Don't lose heart check under every rock...

[astros18]

I must say I agree with Shen that there is some environmental cause here. The doctors have run all the tests and cannot come up with anything conclusive. I don't mean to be smart and I am not being ugly when I say that you are not a normal healthy young lady anymore. I know you know how serious this is since you are doing everything medically possible to get better. I encourage you to read the book, Patient, Heal Thyself by Dr. Jordan Rubin, founder of Garden of Life. It is the story of how he healed himself from many digestive disorders including Crohn's disease. I wish you good health.

[SamTheMan]

Saritake,
   I feel for you as i have had an eerily similar history and work up as you. (see my post dated 7/27). i never heard of osmotic/secretory diahrrea. as the dr. mentioned, it seems like an IBD blood workup is the major thing missing from your history. theres only one lab in the country- prometheus, that performs the depth of tests for all IBD disease that can diagbnose or rule out what you may have. i personally have not gotten approved for the prometheus tests from my Health insurancem but i have had ASCA, ANCA and gall bladder tests. you really need to have your ASCA and ANKA checked. if the

[SamTheMan]

sorry this got cut off before..

Saritake,
   I feel for you as i have had an eerily similar history and work up as you. (see my post dated 7/27). i never heard of osmotic/secretory diahrrea. as the dr. mentioned, it seems like an IBD blood workup is the major thing missing from your history. theres only one lab in the country- prometheus, that performs the depth of tests for all IBD disease that can diagbnose or rule out what you may have. i personally have not gotten approved for the prometheus tests from my Health insurancem but i have had ASCA, ANCA and gall bladder tests. you really need to have your ASCA and ANKA checked. if these are positive, you may have crohn's or UC or even both. these diseases can take a LONG time to diagnose (my dr. says avg of 2.6 yrs!) and biopsies are not always reliable.....
good luck and if you have reciprocal advice for me (im damned depressed about this too!) i'd love to hear that too.
best,
sam

[kendagoo2]

You sound just like me!  I am an American currently living in Bolivia, and in May I was hospitalized for severe diarrhea/cramping/dehydration.  The bacterial culture came back negative, as did the parasite/amaeba test.  I did have blood in my stool, and my white blood cells were very high.  It took longer than normal for the cipro to take effect, but finally it did and for 20 days I was fine.  Then the diarrhea/night sweats came back and it felt like my insides were alive.  I had and endoscopy which showed mild gastritis (h-pylori negative) and my colonoscopy was clear.  For a week after the colonoscopy my stools were wierd - very infected looking and lighter than normal, plus soft.  Then, suddenly, I was fine.  Last week the night sweats came back as did the diarrhea and 'alive' feeling in my insides.  I go tonight to find out my test results, which I am sure will show that once again I do not have a bacterial infection.  The only thing I can think this sounds like is Crohn's, and that is very depressing.  I hope we both get some answers soon.

[sarikate]

Oh man, I totally feel your pain!  I've thought for a while that my repeated parasite infections could have messed me up for life even if I don't currently have a parasite...have you been treated with metronidazole (Flagyl)?  

I love Bolivia, even though I got sick as a dog there!  I'd love to e-mail/chat with you, maybe we could be detectives together.

[kendagoo2]

Hi Sarikate!
I finally received some good news - my fecal sample showed 'abundant e-coli', so now I on an antibiotic once again.  Hopefully my gut will get back to normal, but after three months of re-curring problems I am starting to wonder.
Let me know what they find out with you! I can't imagine that I've been infected with e-coli three times in the past three months, but that is hopefully all it is.

[sarikate]

Well, the doc did order an abdominal ultrasound after I told him about the URQ pain that's been bothering me.  Sure enough, I have gallstones.  He doesn't seem to think that is related to all of my other symptoms...but that GB is coming out, probably next week.

[astros18]

I'm glad you feel you have found at least one solution to your problems, but I have to say that taking out the gallbladder causes many problems of its own. I encourage you to read the MANY posts on this forum regarding gallbladder removal and continued problems. Once your gallbladder is removed you should start taking a hi lipase digestive enzyme. Good luck to you. I hope it helps.

[sarikate]

Keeping my gallbladder in is causing very intense pain and nausea, at least it has been for the past three weeks.  The literature indicates that most people don't have significant problems following gallbladder removal, although I've read about increased diarrhea.  I'm taking the enzyme you mentioned already, as a matter of fact, as well as a good probiotic.

[hunt3105]

I had Giardia at the start of the year. It took a few weeks before it as properly diognosed, then I was prescribed "flagyl"(NOT SURE IF THATS CORRECT).
My problem is that my bowel habits have never gone back to normal. I find I have very loose motions and very mucusy/stringy.
It sounds discusting I know, but I am curious to know is this normal. Since having the Giardia I have suffered with anxiety to.

[astros18]

Many medical protocals are inefficient at ridding the body of parasites. Doctors will tell you that. I found Garden of Life Fungal Defense the best thing for fungal infections and parasites. It is a 2 week program, follow the directions. It can cause some mild detox symptoms such as headache, nausea, and tiredness. I would also consider having a set of colonics done once my detox was over. I would also follow up the detox with 3-6 months on a strong probiotic to replenish the beneficial flora in your intestines that the flagyl probably killed off. Drink LOTS of pure water and make sure your bowels move frequently(at least 1-4 times per day). Hope you feel better.

[kendagoo2]

Hi - I posted earlier that I finally found out I had e-coli, but after a week of antibiotic treatment, I am still not back to normal. (I was hospitalized in May for an intestinal infection of unknown origin) I live in Bolivia and now plan to go to the states for further testing. Intestinal infections are very common among the Americans here, but I and a few others are unable to get back to normal.  Has anyone heard of 'post-infectious IBS'?  It is a newly diagnosed form of IBS that shows up after a severe intestinal infection among a small number of people.  It is not psychosematic, but rather is a real entity that causes slight (but visible) inflammation in the intestines.  Maybe that is what some of us are dealing with?

[teresa1971]

Hi there, I have just been diagnosed with post infectious IBS, my symptoms and work up have been as follows...

Acute onset gastrointestinal symptoms three weeks after returning from vietnam.(nausea, vomiting, mucousy diarrhoea - no fever, no blood in stools)

Treated with Flagyl and Ciprofloxacin for one week.
Decrease in mucousy diarrhoea and vomiting, but ongoing nausea, appetite loss and soft weird looking and smelling stools with inceased frequency.

One week of no drug treatment - no change in symptoms

A further week of treatment with tinidazole - no change in symptoms.

Blood work, abdominal ultrasound, stool samples all clear (aside from sub clinical hyperthyroisism)

Endoscopy showed esophagitis, colonoscopy showed inflamed bowel (rectum only - not colon or terminal ileum)

GI is making an 'educated guess' that it is PI IBS and not any other illness/ syndrome.

Have begun treatment with

Salazopyrin (for bowel inflammation)
Nexium (to reduce stomach acid)
Clarithromycin (to treat SUSPECTED bacteria C. Jejuni)

Have been on this treatment for five days and am not yet noticing significant improvement. (Still have persistent nausea and decreased appetite, soft stools)

I am most concerned about the persistent nausea and appetite loss, as these don't seem to be common symptoms in IBS. In addition to this, some of the more common symptoms such as abdo cramping etc. are virtually absent in me???

Anyway, though you might find this info useful!

cheers