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Q: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss. ( No Answer,   11 Comments )
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Subject: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
Category: Health > Conditions and Diseases
Asked by: richardj34-ga
List Price: $50.00
Posted: 01 Aug 2006 05:53 PDT
Expires: 31 Aug 2006 05:53 PDT
Question ID: 751419
For the past 7 years, I have had an undiagnosed digestion problem. Its
symptoms are nausea and vomiting.  I have seen countless doctors -
several gastroenterologists, infectious disease, neurologist,
allergist, nutritionists, hypotherapist, holistic doctors,
immunologist, cardiologist, ear/nose/throat, and chiropractors.  Each
doctor ran me through a full work-up of tests.  All tests came back
negative.  On one hand that is good, because they found nothing wrong.
On the other hand it is frustrating, because they did not find the
cause.  Bottom line is that each time I lose 15+ pounds and the
majority of my strength.  It is especially hard because I have a very
active lifestyle.  I play hockey, take karate, coach hockey, go to the
gym, and maintain a healthy family/social life.

My symptoms:  at first I belch a lot, get full only eating a little
amount of food, feel
nausea, get the watery mouth/throw up feeling.  Could be on/off for a
week or so, then
have 2/3 days of vomiting about 5-10 times a day, then about 2 weeks
of nausea.  During those 2 weeks, I randomly throw up about once every
other day.  I have no appetite and lose a lot of weight quickly.  Then
randomly, I begin to feel better.  My appetite slowly comes back and I
slowly start to gain my energy, strength, and weight.  At first they
thought it was SMA syndrome (eventually ruled out), then they thought
it was cycle vomiting (ruled out), then they thought it was the
gallbladder (removed, then got sick  again), then they thought it was
gastroparesis (ruled out due to gastric emptying test), ???.now they
do not know.  I need Dr. House (from the FOX TV series, or someone
similar who can help)!  Who can help????

I never have pain in my stomach, just nausea & vomiting.  
Meds tried: anti-emetics zofran, compazeine, phenergan and reglan.
Also, tried imitrex, motilium, propulsid and zelnorm.

I had my first episode in 3/1999 while in Cancun, Mexico for spring
break.  I got sick the 2nd day there, and didn?t leave the room from
the 3rd day to the last day of the trip.  I had other episodes in
11/99, 5/2000, 7/2003, 9/2003, 9/2004, 3/2005, 3/2006, and 7/2006.

I have also tried the holistic approach by taking whole food
supplements, different body system cleanses, etc.  I eat well.  I do
not eat fried foods; never eat fast foods, etc.  I do not eat cheese
nor drink milk (at advice of one of my holistic providers).

Each time the amylase & lipase tests are always normal.  
Stool tests are always normal (except 7/2006).  Parasites are always negative.

I have had a gambit of tests:  3/1999 ? 1-week hospital stay due to
nausea/vomiting.
11/1999 ? 1-week hospital stay due to nausea/vomiting.  Small bowel
test showed only slight dilation in small intestine, very little
reflux.  The obstruction series was normal.  CT scan ? slight
narrowing of duodenum, but doctor convinced that the symptoms aren?t
due to this.

5/2000 ? Two ER visits for IV fluids due to nausea/vomiting.
12/2000 ? gastric emptying test shows normal after 2 hours, but some
delay after 4 hours.
Small bowel transit was normal.  The actual gastrogram was normal. 
The small bowel motility showed retrograde MMC's with some
simultaneous MMC's overall felt to be consistent with a neuropathic
disorder of the GI tract.  I reviewed upper GI series, thought that
the site of narrowing was too proximal to be caused by SMA. * Possible
cyclic vomiting.

7/2003 ? ER visit due to nausea/vomiting.  Obstruction series - no
evidence of abnormal bowel distention. Nonspecific bowel gas pattern.

9/2003 ? 4-day hospital stay due to nausea/vomiting. Obstruction
series - no evidence of abnormal bowel distention. Nonspecific bowel
gas pattern.  * No change since 7/3/03 series.

10/2003 ? Neurology  MRI of brain - no evidence of acute intracranial
abnormality. EMG of arms & legs - all muscles studied were normal. No
electrophysiologic evidence of polyneuropathy or another neuromuscular
disorder at this time.

10/2003 ? Infectious/Tropical Disease ? blood tests normal. Referred
to neurologist.

11/2003 ? GI (second opinion) - symptoms are not classic cyclic
vomiting.  Thinks it is a motility disorder of the small bowel, but
without any specific precipitating factors that he may be able to
avoid.  Suggests to repeat upper GI and small bowel follow through if
symptoms occur again.  Also, suggests possible clinical trial, if
available.

9/2004 ? 3-day hospital stay due to nausea/vomiting.  Small bowel
follow through - small amount of gastro esophageal reflux.  Otherwise,
unremarkable upper GI and small bowel examination.  Began to get
better, then severe pains in stomach.  First time I ever had pain with
the nausea/vomiting.  Tests showed gallbladder had become diseased. In
10/2004 - Laparoscopic gallbladder surgery

10/2004 ? Allergist - complete food allergy skin prick test - no
allergies/all negative.

10/2004 ? Immunology - No Hep b, No hep c, no autoimmune disorders.
Immune system is actually very strong, good antibody levels.

12/2004 ? Cardiology - Tilt Table Test was negative.  > test was to
check for pots syndrome - orthostatic insuff., autonomic cause for
nausea/vomiting.

3/2005 - Diarrhea for 4 days then nausea/vomiting for 5 days -
possible bad stomach flu, recd IV, good for 4 days then sick again for
a day, lost about 13 pounds.
> Endoscopy - normal except for very small (1 cm hiatal hernia) - not
cause of nausea/vomiting.  > Obstruction series - normal.      > EKG -
normal.

3/2006 ? I was ill n/v for 3- 4 days. Another 3 weeks of nausea and
wt. loss, suddenly better.  Gastric Emptying Test - normal - "you
probably don't have gastroparesis"



4/27/06 - Lactulose Breath Test was positive for bacteria overgrowth.
Blood test from Promethius labs ? showed a predisposition to lactose intolerance.

7/2006 ? sick again with same symptoms.  (Week of burbing a lot,
feeling full only after eating small amounts, 2 days of vomiting 10+
times/day, 3-4 weeks of nausea and randomly throwing up).

Stool test shows white blood cells.
Prescribed 10 days of antibiotic Xifaxan. ? didn?t seem to help

Tests scheduled:  	?Flex Sig? scheduled.
 			?Upper GI and Small Bowel Follow-Through? (last one 2004).  

Also, prescribed 10mg dosage of Imipramine - take before bed.

Clarification of Question by richardj34-ga on 01 Aug 2006 11:34 PDT
Thank you very much for your comments.  I have been keeping a journal
of the circumstances when I get sick such as foods, etc.  I do need to
take better notes though.  PS  I am a male. Thanks again!

Clarification of Question by richardj34-ga on 04 Aug 2006 09:56 PDT
7/11 - stool test shows white blood cells.  7/24 - test does not.
8/3 - upper gi and small bowel follow through - no crohns, no ulcers, 
just some slow motility in small bowel
Answer  
There is no answer at this time.

Comments  
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: ghost2006-ga on 01 Aug 2006 08:25 PDT
 
Dear richarj34.  How awful!  I am not, unfortunately, a doctor, or
have ever had experience with something like this (thank goodness!). 
Hope for you that you find a final answer here on GA.  In the
meantime, I have some thoughts about it, and I hope they may help a
bit.  I would think that this is clearly a repeating, not a cronic
situation.  I would therefore consider it likely that there is a
trigger of some sort, and since all tests have come out basically
negative, I would try, if you can, to identify the trigger.  This
trigger should be something that is seldom present in your life, So:

1) First: below, I am talking about several lists you will have to
make. Please look at them first, and then come back and read the rest
of this point.

1a)  Then: can you think back to each of the episodes, (starting with
the most recent), and identify if you were doing at the time (say
within the five days prior to your first symptom) that was unusual or
rare for you?  Such as:
    -  New drug(s) (over the counter, prescription, illegal, omeopatic, anything)
    -  New food or a change of diet
    -  New activity
    -  New stress, such as moving, byuing a car, getting married, etc.
 (I believe you are lucky that you are a man, I think if you were a
woman you likely would have been diagnosed with PMS or a mental
problems or "acute fatigue symtoms".  Forgive the little bit of
bitterness here.  On the other hand, apart from PMS, all of those
could possibly be valid in your case).
    -  Temperature extremes
    -  Extremes of any kind (physical or mental or spiritual)
    -  Etcetera for additions
    -  Consider subtractions, something you stopped doing (applies to
all of the above and the etceteras).
    -  Consider anything else that might have changed, even minimal

2)  Make a list, as complete as possible, of all the things you found
above for the latest episode.

2a) Note: I would suggest that you get well organized before starting
the lists, to be able to find thngs!  YOu could use Excel, Access, or
other PC tools (which could sort data alphabetically, by date, by
hour, by episode, etc).  Also, do the outmost to enter dates / time,
and leave a comment field for notes.  If not PC tools, you could get a
number of thick telephone agendas (with lots of pages for each letter)
and use one for each tye of list.  Do the same for each episode.

3)  See if any of what you listed had happened the previous time. 
List all of those, and then list everythig else that happened the
previous time, according to the list in number 1.

4)  Keep going back as far as you remember.

5)  See if you can find a pattern (good luck)!

6)  If not, start keeping a daily diary of everything that goes
through your mouth that you have not had for a while (mints at
restaurants, cigars, whatever, antiacids, drinks, etc). Make sure to
date (and name the day) and time of the happening

7) do the same (on separate sections of your diary) for anything unusual that:
    -  you touch or touches you (silk, flowers, wool, new clothings,
vynil - as in cars, people you meet seldom, etc.)
    -  goes through your nose (stinks, perfumes, peas, etc.)   
    -  happens to you.
    -  stresses you.

8)  If you keep this up, the last two weeks prior to the next episode
should be well documented.  Then look back to the past episodes and
see if you can find a trend.  Best of luck.

9) Just a layman series of possibilities that may not look immediately
appaerent.  You may want to check these out (if you have not done so
already):
    -  To my knowledge, research says that spoiled fish (and other
food) will cause intestinal problems a week or more (up to a month)
after ingestion.
    -  Food containing natural fibers (most fruits and vegetables,
beans of course, etc)
    -  If you do not have a listing of the allergens that your doctor
has tested, get it.  See what elso you shoud be tested for (such as
anything not on the list that you do, eat, touch, smell etc on an
unusual basis: check you lists)
    -  Drugs interact in a weird way, sometimes.  A few, give me leg
cramps at night (which stop once I quit the drug).  Some, that I
normally take together with others, if taken a couple of hours apart
cause me to get shortness of breath.  Others (including the vitamine
Niacine) give me weezing effects.  To figure out the associations I
have had to do just what I told you above.  Think back on what was new
/ changed at the time.
    -  Lastly, I did not see on your list of drugs taken any Gravol. 
I am sure you must have gotten it, together with a whole host of them
you did not mention.

Ina any case, hope this helps a bit.  Again, I wish you all the best
and a good answer.  Cheers

Ghost2006
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: probonopublico-ga on 01 Aug 2006 09:38 PDT
 
Like Ghost, I'm no doctor (and nor am I a ghost) but I have a friend
who suffered from severe migraines for 30 years before he read a
library book about allergies and discovered for himself that he was
allergic to yeast ...

And this was after visiting loads of doctors, specialists, clinics,
etc. - somewhat similar to your experience.

I note that you've already had 'complete food allergy skin prick test - no
allergies/all negative' but were these really 'complete'?

I suggest that allergy testing normally covers the most common
suspects but that it is hardly likely (perhaps impossible?) to cover
all.

I therefore echo Ghost's advice that you should keep a detailed list
of stuff you eat; places you go; animals you meet ...

There has to be a trigger!

And the next time you succumb (if there is a next time) analyse your
list and see what you did prior to the attack ...

Good Luck & Even Better Health!

Bryan
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: kriswrite-ga on 01 Aug 2006 10:22 PDT
 
If you are female, note any link to your cycle. Hormones can certainly
make you quite nauseated and apt to vomit.

Kriswrite
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: sonoritygenius-ga on 01 Aug 2006 19:25 PDT
 
try to exercise vigorously.. buy energy drinks and dont eat solid
foods for a day or 2 to see if symptoms alleviate..

I wonder if its a stomach tumor..
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: pugwashjw65-ga on 01 Aug 2006 22:03 PDT
 
Have your doctor do a test for CYTOMEGALOVIRUS. Its called a
'serology' test. The doctors do not worry all that much about it
because nearly everybody HAS it. But for a small number of people, it
can be devastating. It is also portentially harmful to pregnent women,
like German Measles.
Also have a look at your diet. Cut out completely WHEAT products, and
replace them with products made from SPELT FLOUR. Spelt is an ancient
form of grain, but is better absorbed. A family member went from 60
kgs. [not heavy] down to 35 kgs. before it was discovered about the
bad effect of wheat. She is now back up to 56kg. Hope this helps.
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: health777-ga on 13 Aug 2006 15:07 PDT
 
You might try Telemedecine as indicated in medicalcountries.org.
Physicians, in other countries, cost as little as 1/20th of the U.S.
equivalent experts.
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: linezolid-ga on 30 Aug 2006 02:42 PDT
 
Has anyone mentioned the term "porphyria" to you?  This group of
diseases are inherited (or acquired) disorders of metabolism that can
lead to cyclic problems such as you mentioned.  Your symptoms are by
no means classic, but could represent acute intermittant porphyria. 
Since the pophyrias are relatively rare, many doctors will not
consider them.  Fortunately, the diagnosis can be made fairly easily:
urine porphyrins and porphobilinogen (which can be elevated even
between attacks) must be sent.

Good luck to you.
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: kikitina78-ga on 11 Sep 2006 14:07 PDT
 
I have been having similar problems with digestion also.  I have been
to numerous doctors and had every test imaginable and been to
specialists.  My mom says I have been vomitting since I was a baby. 
My vomitting goes in spurts.  It really started for me when I was
about 7.  I vomitted only after eating and not every time.  I felt
like eating small meals too.  Usually after I threw up I would feel
like eating.  I had upper GI then and they couldn't tell me what was
wrong.

Then it started again in 5th grade.  I had the same teacher as I had
in 2nd grade so they thought I was worried about something.  It went
on through part of the summer and then stopped.  Then in 8th grade the
same thing happened.  I miss lots of school and dropped down to about
80 pounds.  I could stick my whole fist in my collar bone.  Then I
went to a gastroenteroligist.  I had a scope done and I had ulcers in
my stomach.  He diagnosed me with eosinophilic gastroenteritis.  This
is basically I am allergic to certain foods.  It made sense at the
time, because when I would eat peanut butter then I would throw up
about an hour later.  I would continue to have stomachaches, but
usually could tell when I shouldn't eat certain types of foods.  They
didn't always make me sick just sometimes.

Then when I was in college I had choked on a pill and had to have a
scope done.  I found out I had scar tissue on my esophogus sphincter
muscle and that my stomach looked like an 80 year old woman's
stomache. I had holes all over in my stomach (ulcers). I have been on
priloseic or nexium since I was 21.  It has seemed to help me and I
basically quit throwing up.

When I was 23 I started getting allergy shots again.  I was working in
a school with no air conditioning, so I had sneezing fits all the
time.  I have gone to 3 allergists and they say I don't have
eosinophilic gastroenteritis.  They also tell me food allergy tests
are inaccurate.

Then last year my new insurance wouldn't pay for my priloseic so I had
another scope done.  I had ulcers at this time but not the bacteria
that causes it.  They still couldn't tell me what was wrong with me,
but increased the priloseic to twice a day.  I wasn't even throwing up
or had any signs of ulcers.  When my stomach hurts it is high just
below my breast bone.

I just moved to OK and now have been getting the stomachaches again. 
I have been on allergy shots for about 5 years.  I have been sick
these past few weeks with stomachaches and bad gas.  I haven't thrown
up, but I'm on the verge.  I think it's because I have been outside
for doing yard work.  Yesterday, I took a nexium in the morning and
then did yard work all day.  In the evening I took a benedryl and then
right before bed I took a zantac.

I think my stomach problems are different then yours, but I wanted you
to know someone else is out there who hasn't been diagnosed.  I guess
I'm going on 21 years with stomachaches.  At least I've been able to
control the vomitting for the past 6 or 7 years.
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight l
From: rhino334-ga on 17 Sep 2006 14:38 PDT
 
I am sorry to hear about your sufferings. I am a medical biochemistry
student with no formal training asyet but i have been around a medical
laboratory and seen the range of tests that can be done for allergies
to food items as well as other allergens like dust and pollen. You say
you have had a 'skin prick test' and came up clear but there are many
other tests based on a sample of blood taken that can be done. All the
tests look at the ige levels in your blood in relation to a specific
allergen. I have seen a list of about 60 different potential allergens
that could be tested for so it could be hard to find but worth it in
the end. Your doctor should be able to arrange these tests at an
outpatients clinic. Good luck!

Regards
Rhino334
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight l
From: agoencz-ga on 10 Oct 2006 18:05 PDT
 
This is a bit late of a reply, but I had about the exact same
symptoms.  Went through a wealth of tests (including skin-test for
allergies).  No one could figure out what was wrong. Finally went to a
gastro-enterologist... a REALLY good one.  He made me keep a food log
(which I was also terrible at).  Then he did a different sort of test
for food allergies.  Not a skin test, but involving a blood sample.

Sure enough it came back that I was allergic to Sesame Seeds.  Years
later the same problems started popping up with more frequency...
re-ran tests and sure enough I was allergic to Milk protein.

I avoid both of those like the plague and I'm generally symptom free
except for a few mistakes here and there.  I would really try to keep
up the food journal and then before you have an episode closely
examine it.  See if there is any pattern at all and if all else fails
try to get tested for the products you ate that wouldn't be covered in
a random blood allergy test.

Also, I ran into quite a few doctors (after the testing and
confirmation) that were VERY skeptical of my food allergies.  One went
so far as to order me to take a test where I had to DRINK A GLASS OF
MILK to prove that I had an allergy.   I got HORRIBLY ill, informed
the doctor and never saw him again.

It is true that food allergy tests are spotty.  Although, they rarely
give false positives.  If you test positive to a food allergy it's
almost a sure thing that you're allergic.

I completely feel your insanity.  There is nothing worse than being a
prisoner of your stomach.  I remember for a while I'd refuse to go
out, on trips, long car rides... just because I never knew when my
stomach was going to act up.

I wish you the best of luck.
Subject: Re: still undiagnosed digestive problem after 7 years-nausea, vomiting, weight loss.
From: richardj34-ga on 30 Oct 2006 12:56 PST
 
thank you all for your time in responding and offering help.
I now keep a journal and will attempt to get more allergy tests.

thanks again and God bless!

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