I think I have a gastrointestinal disorder that hasn't been named yet

Since September of 1999, I have had frequent stomach aches, nausea, constipation, periods of not being interested or able to eat anything, food sensitivities (milk, nuts, spices, fats), bloating in my abdomen, general abdominal pain, difficult to pass stools, flatulence, and a bad taste in my mouth accompanied by bad breath.  Also, I suffer from intermittent bouts of motion sickness to varying degrees.  My sleep patterns are also not normal as I suffer from reflux when I lie down.

I have seen nearly 10 different doctors and a gastroenterologist about my symptoms.  My diagnosis was initially anxiety and GERD.  Anti-anxiety drugs like Paxil, Celexa, and Zoloft have not seemed to help at all.  I have taken various antiacids such as Axid, Prevacid, Nexium, Prilosec, and Zantac with little to no help over time.  

Each and every day of my life consists of being wary of anything I eat as it may cause me to feel nauseous and have a stomach ache all day, even if I eat foods that should not cause a flare up.  

My symptoms are starting to affect my ability to attend church, family gatherings, travel, attend school and lead a normal life.  In fact, my fiance left me because he thought I was faking my illness so I would not have to work.  I can never guarantee that I will feel well, so I cannot plan much of anything in advance.  I take each day one day at a time, hour by hour.

Please note that I NEVER throw up.  I feel really bad, like I might vomit, but I never do.  I have not vomited since having a 24 hour stomach flu in July of 1999.  I have suffered with the symptoms listed above for nearly 4 years and am ready for someone out there to give me some real help and a real diagnosis.

Doctors in the past are much too eager to say that this is all in my head, I am simply anxious, deeal with it, it won't kill you so stop complaining, and that I have IBS and GERD.  I do not believe my diagnoses as NONE of my treatments have had long-term results.

Can anyone out there shed some light on what may be wrong with me?

I have never had a fecal test or colonoscopy.  Are there any tests I should insist that I have performed?  I feel like I have been largely ignored by the medical community.

Please, someone help me.  I want to be my old self again.  When I am ready to marry, I want to be able to feel good all day long and truly enjoy my wedding.  This is my ultimate goal.  I beg of you, help me please!

Thank you all so much.

[Kevin Pho, MD]

With these symptoms persisting for 4+ years, it would be reasonable at the very least to consider endoscopies.  Malabsorption, inflammatory bowel disease, dyspepsia, or gastroparesis all possibilities.  Irritable bowel disease also should be considered if the workup is negative.  

To start, I would agree with tests such as a colonoscopy, fecal fat tests, tests for celiac disease and an upper endoscopy.

Secondary tests to consider would be a gastric emptying study to evaluate for gastroparesis.  

If the tests are negative, then you may want to focus treatment on IBS.  If IBS is considered, you may want to consider some specific medications such as Lotronex or Zelnorm is right for you (Lotronex for diarrhea-predominant symptoms and Zelnorm for constipation-predominant symptoms).  

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.

Thanks,
Kevin, M.D.

[yoshi]

i have found out that when i am under prevacid/zantac/prilosev etc,my stomach does not have enough acid to digest food such as fat,cheese,milk,nuts,tomato sauce.
i will drink some cranberry juice to raise the acid level in my stomach.
trial and error,i learn to find out what works for me.
pineapple juice also raise the acid level.

[coolwimp]

Have you been tested for celiac disease?

[yoshi]

you did not mention testing for h pylori bacteria?/

[nadia]

I have alot of your symptoms and am also still undiagnosed after almost 3 years.  It has been discovered recently that I have a parasite and I am wondering if you ever looked into that.

[PAJ]

If you read the article below By Dr cranton you will discover that the symptoms you describe are classic Candida infection. Symptoms from other causes do overlap ,but it pays to check out yeast sooner rather than later. Your experiences with doctors are in line with thousands of others, too many have one eye open to the possibility of litigation  Treating an unrecognised condition is risky, it pays to pretend it

[joellen]

Your description sounds very much like the condition I suffer from called gastroparesis. It is a stomach motility disorder, in which the stomach does not properly digest food. Particularly difficult are items hard to digest, either because they are high in fiber or high in fat. You should absolutely ask you doctor about a test called a gastric emptying scan. It is a simple test. You eat a small meal, lay down on a table, and they take x rays while it passes through your stomach. A delay in stomach emptying would confirm the diagnosis. In the meantime, why don't you try limiting your intake of foods like red meat, raw vegetables and fruits, and concentrate on carbs that are easy to digest, such as potates, rice, pasta. Chicken and fish are more easily tolerated. Eat only what appeals to you. For a long time, toast was a mainstay. Also try something like Carnation Instant Breakfast, Slimfast (because they are easy to digest, low in fat), or possibly some Ensure. Liquids generally are easier to digest. Small meals, and light exercise, such as walking, also helps. Sleeping in an inclined position, such as a recliner or with a special wedge shaped pillow will also help the stomach to empty better. There are also medications that can help, but get the proper diagnosis first. I am convinced that many more people suffer from this than is thought, because the medical community is just not aware of it.  Your symptoms are identical to the ones I had, and I felt the same way, I knew SOMETHING was wrong, they just hadn't identified it yet. I did not vomit either, just always felt sick. Sleep was a problem, and it turned things upside down. It is NOT in your head, it's in your stomach!

[yoshi]

when it comes to liquid drinks,chocolate drinks are harder to digest.

[nadia]

I was wondering if anyone could recommend a good gastroenterologist who specializes in ERCP in BC, Canada..Thanks.

[Peragine1]

I have read your post and while I am afraid I do not have an answer for you, I would like to attempt to comfort you.  I too have spent years with a list of problems that have yet to be named.  I have had every test at least three times, have restricted my diet to the point of near starvation, and have tried every drug remotely related to any "disorder" i have been diagnosed with.  Basically, I don't know what to tell you, but I do sympathise and want to let you know there are other people out there suffering and confused.  I am a 28 year old woman whose life has unfortunately been taken over by a mysterious disorder.  I have had diarrhea for 5 years.  I have had my gallbladder removed, and have developed panic attacks in response to eating and constantly having to go to the bathroom.  Every test I have had remains "normal" yet I can no longer work, socialize or do anything besides force feed myslef to stay alive.  Many people think it is all in my head, although in therapy sessions, all i can think of to talk about is my chronic intestinal pain and fear of eating/diarrhea.
If you find any answers, let me know.  I don't buy the ibs reasoning, because I have done everything to alleviaate it and has not helped.

[MEJ]

I do not have an answer for you but can relate to your frustration. I to have been suffering from similar symptoms for the past 3 months.  After many doctors and many tests nothing is showing up. I feel as though I am in this alone. Many doctors treat me as though I am crazy and I had a close friend who suggested I get a hobby.  I have been comparing notes with others who have suffered with gall bladder disorders so that is what I am currently trying to rule out. My sister is a nurse and has had many patients recently with the same symptoms and have had their gall bladders removed.  I believe a hida scan was done and proved gall bladder failure.  Have you considered this?

[jt13]

Can't sympathize with you enough. I have been in the same boat ever since I had a hysterectomy in 1998. Have had colonoscopies, tests, etc...plus I'm on Prozac because I feel like a nut case. I had an 'accident' at work once, and it was absolutely the worst thing that ever happened to me. It became mental after a while, and I couldn't be around anyone, because I was afraid I'd 'get stuck' talking to them, and wouldn't be able to find a bathroom (I wouldn't even have to go, but just the thought could make me). I couldn't ride in a car. I couldn't even take short car trips with my husband, I was so afraid I'd have to be away from a bathroom. I had to leave job interviews in mid-sentence! Just leave!
I have to say the mental part is better, I think, but I have constipation/diarrhea syndrome all the time. I have to take Immodium and then it starts the cycle all over again. I don't have much pain, but once I have the diarrhea, I have to get to a bathroom NOW.
Sorry, but I know what you're going thru. Good luck.

[yoshi]

my mother has cervical cancer 7 years ago and suffers from constant diarhea (diarrhea) since her treatment.
of course getting old is another problem-incontinence .
i just completed 14 days of PREV PAC and the antibiotics screwed up the flora in my body and i end up going to the bathroom many times a day.
then i went to the store and bot some good yogurt,not the **** dannon has with fruit or chocolate at the botttom,but good ones you find in health food section of the supermarket or in a health food store and the diarhea (diarrhea) stopped.
if may just be a matter of watching what you can eat and what you cannot eat and restore the flora in your body.
surgery,use of antibiotics etc can upset the body to cause yeast overgrowth or c diff to overgrow.

[vankay]

Hi everyone...

Nadia, I was wondering if you had similar symptoms for three years.   Then is it possible that a parasite would have caused your problem.  

But then again, can parasite live in the human body for years??

[nausea24/7]

Yes, parasites can live in the body for years.A tapeworm can live for up to 20 years in a human body. Also, our body depends on 'good bacteria'.

[NoGallBladder]

Hi peragine1, I had my GB out in 2000.  While I have no diarrhea, I do have emotional upset.  After doing much reading, I have found that the gut is not wired for pain but sends a message to the brain which alters emotion.  That's the signal that something is wrong w/ ones body.  The theory that my Dr proposed is that continuous and excess bile acids irritate the colon and trip the sensors there which annoys the brain.  My Dr. thinks that taking something called questran will help - it binds up and nuetralizes excess bile acid.    
I have yet to try it, I need to talk to the Dr again about it.


I feel stressed all the time - not like this before my GB was taken out. I have insomnia, bloated feeling, vague abdominal pain and  occasional mind-fog.  I'm trying hard to regain my health.

Has anyone else tried Questran?


all the best.

[NoGallBladder]

Hi peragine1, I had my GB out in 2000.  While I have no diarrhea, I do have emotional upset.  After doing much reading, I have found that the gut is not wired for pain but sends a message to the brain which alters emotion.  That's the signal that something is wrong w/ ones body.  The theory that my Dr proposed is that continuous and excess bile acids irritate the colon and trip the sensors there which annoys the brain.  My Dr. thinks that taking something called questran will help - it binds up and nuetralizes excess bile acid.    
I have yet to try it, I need to talk to the Dr again about it.


I feel stressed all the time - not like this before my GB was taken out. I have insomnia, bloated feeling, vague abdominal pain and  occasional mind-fog.  I'm trying hard to regain my health.

Has anyone else tried Questran?


all the best.

[jsauer]

I completely understand how much it can alter your life having a problem such as this. I have had numerous health problems over the past 4yrs or so. One such problem began with h-pylori bacterial infection. I had to be treated 4x before I finally rid myself of that.
The only problem was the persistance of the symptoms after the treatments. These problems were debilitating. You have to completely alter your life style to live around your problem. I had heard the 3 magic letters (IBS) from numerous doctors and kind of took that as a "not sure". I have had about every GI test there is. Nothing.
After getting nowhere I began checking into boards such as this and heard of something called glyconutritionals. I tried it and within 2 weeks my symptoms had subsided. I was absolutely shocked! My wife was also completely amazed at the results(your disease not only affects you). After years of pain, diarrhea, stomach cramps, Dr visits, tests, more tests, ER visits, everything was back to normal. I had not had a normal solid bowel movement in literally 3 months. Now I have nothing but normal for over 2 months now. I told my Dr of the success I was having with them and she said if it works keep on them. I am still going to follow up with my usual colonoscopies and I'm anxious to see if anything different will arise.
If your interested in checking out the technicals: www.glycoscience.com  
For general info: www.glycoinformation.com
For the product: www.crnutras.com
I can not express to you the effect these glyconutritionals (Optimal health system)has made on my life. I'm not afraid to leave the house anymore! I can even attend family functions again.
Hope this may help you in someway. You are not alone in your feelings. Stay strong and don't stop looking for your answers. It does get very frustrating at times!