Is this really what I have?

[gincy]

For the past 6 months I have had "attacks" about 2 times per week.  I had all the normal tests - colonoscopy, stool test, blood work, etc.  Since everything came back normal, the GI doc said I have IBS and prescribed robinul forte.  I still have attacks - although not as severe since the medication.  I have been doing alot of research on IBS and I just don't think this is what I have.  My symptoms start with a tingling in my lips and itching of my palms and bottom of my feet.  Then I get a localized pain (dull ache about 7 on 10 scale)right below my ribs in the center of my abdomen.  Moves on to diarhea (diarrhea) - some cramping, not all that severe, but the localized pain intensifys and then I get so faint I have to lay down wherever I am.  I also sweat from my head and neck so that my hair is soaked after these attacks.  I do not lose consciousness, but become out of it and unable to speak during these sessions.  It lasts approx 45 minutes to 1 hour.  Afterwards, I am so weak all I can do is sleep.  A couple of times I have broken out in hives on my head, face and arms during these attacks.

Since IBS is a diagnosis of exclusion is my doctor missing something?  I feel like he is lumping me into a group based on some of my symptoms - but I can't find any documentation anywhere that describes all of my symptons as being a result of IBS.  

This is ruining my life - yesterday I ended up on the floor of a bathroom in a stable in a park in Bronx, New York cause I had attack while driving to CT for a business meeting.....gross!

Do you have any advise on what could be doing this or is it really consistent with IBS?

[Kevin Pho, MD]

If you have had normal endoscopies, CT scans, ultrasound, then it is less likely that the more common disorders (i.e. dyspepsia, ulcers, GERD, gallbladder disease) are present.  IBS can certainly be possible, since there is no "definitive" test for this.

Another consideration would be a more uncommon disease, like carcinoid syndrome.  Symptoms such as sweating, flushing as well as a fall in blood pressure (leading to weakness) are present after eating.  Diarrhea occurs in 80 percent of patients with this disease, typically watery and non-bloody.  

Most reasonable initial test would be measuring urinary excretion of 5-HIAA, the end product of serotonin metabolism.  This option 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.
Medical Weblog:
kevinmd_b

[yoshi]

you need a different doctor.
have you been overseas??

[Biskie2]

It sounds like you are having an intense allergic reaction to something, espcially with the itching on lips and palms, and hives - have you recently started eating something differently or notice AFTER you eat something that this happens?

[yellowrose]

hi i have IBS have had it for 20 years never have i had what your going through. unless you have a different kind of IBS i would be looking into another Dr. hang in there and try not to stress to much what ever you have will be worse with added stress.

[gincy]

I was in Cancun in Feb - this all started in March - the Doc tested me for parasites, etc.  but the test was negative.

Thanks to all for your comments and kind words - I am definitely going to seek a second opinion!

[yoshi]

not parasite,more likely bacteria .
what did you eat/drink??

[gincy]

I stayed in the main hotels for the majority of the trip -only ate generic food and drank from bottles only.

On last day there I lost my mind and went to a small cantina and ate what I swear was burro - when we returned I had GI upset and the doc prescribed a broad antibiotic - it resolved.  Then, a month later, these attacks began.

I was checked for bacterial infection as well as parasites - everything negative.  He even checked for c-dif just in case the antibiotic caused the problem....

[Biskie2]

You may want to check the archives from 6/17 and 6/18, 2003 about diarrhea (sp) and hives from this website.....it seems that I have also read somewhere under the diarrhea forum about somebody else getting these symptoms..... Good luck with this!

[yoshi]

Can you contact someone in Cancun-either the hotel front desk or local pharmacy and ask them what these symptoms are all about??
i would think they may have seen cases like this before.

[kwag]

This definitely sounds allergic in nature.  You could just try an elimination diet to see.  The foods that are most likely to cause this are wheat(gluten), dairy, nuts, eggs, soy.  Just totally eliminate these for at least one month.  Eat only plain meats that you cook and drink good spring water and eat vergetables plain.  It's worth a try to see.  After a month, see if you are better.  You can then add one of the possible allergens at a time.  For instance, drink a couple glasses of milk at one time and several times in one day and see if that is it.  Next try the wheat and so on.  I'll guess that it is the wheat.  Anyhow, it is worth a try.  Best to ya

[Suziepie20]

You are more than likely gluten intolerant!!  My daughter suffered the same fate as you have.  Please get your igg/iga gliadin antibody checked.

[tuxie]

Except for the tingling of the lips and feet, I had the EXACT same attacks you described just last month.  Once I had an attack at my son's kindy orientation and had to run to the bathroom because I was sweating profusely and feeling crampy.  I started sweating to the point where my clothes were wet and my hair was wet and I had some diarhea (diarrhea) and vomiting and more diarrhea and then I just about collapsed on the floor and could not move.  I thought I would die if I moved.  The pain was right where you described.  After 10 minutes, I was able to get up.  I had another attack a week later minus the vomiting and after sonograms and HIDA scans, which both came back normal, the decision was made to remove my gall bladder.  Turns out my gall bladder was badly inflamed and scarred, and in the 4 weeks since it was taken out, I have not had ONE stomach ache or attack.  In fact, I feel great.

So definitely check in to the gall bladder possible causing the attacks.