Discussions By Condition: I cannot get a diagnosis.

Diarrhea, weight loss, no diagnosis

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Seeking Help
  • December 26, 2008
  • 08:21 AM

I am 31, female.

Last April, I got what I thought was food poisoning-- severe diarrhea, vomiting, stomach cramps. After a couple of weeks, I slowly improved...but was never quite "better." In July, the symptoms returned, worsened and stayed. I was also blacking out, getting dehydrated, feeling my heart "skip." In July, my regular MD ran blood tests & all came back normal. He thought he heard a heart murmur and ordered a echocardiogram, which was also normal. He sent me to a GI.

By this time, I was having watery diarrhea up to 10 times a day, some incontinence, and a nearly 30 lb weight loss (from 125 down to 98).

The GI suspected celiac or Crohn's disease and did a celiac panel, stool culture, small bowel follow-through x-ray, endoscopy, colonoscopy. Other than a hiatus hernia (probably caused by the vomiting) and some weird heart results when I was being monitored, everything was normal. He asked me to see an allergist, who did both scratch and blood tests for a bunch of foods. I tested mildly allergic to a few things, but as I was avoiding most of them at the time anyway, the allergist (& the GI) didn't think that was the cause.

I dropped down to 92 lbs and could only eat rice.

The GI sent me to a GI at the Mayo clinic. The Mayo doctor suspected a neuroendorcine tumor or a rare autoimmune disease affecting the small intestine (like eosinophilic gastroenteritis). He ordered blood tests (like those for VIP), 24 hour urine and CT Enterography. All came back normal.

However, I did test as hyperthyroid (in Oct...this was normal in July) so he sent me to the endocrinologist who did an iodine reuptake nuclear scan.

The endocrinologist thinks I have thyroiditis which was caused by the underlying big problem, but the hyperthyroidism seems to be resolving. (I don't have the antibodies associated with Graves disease.) She wants me to go back to the Mayo GI.

So...8 months after getting sick and a million tests (and a lot of money) later, I still have no idea what's wrong. Since I started taking Questran, the diarrhea has decreased. I still have some pain, nausea, fatigue and an extremely restricted diet. Also, as the Mayo GI commented, the Questran is just masking whatever is the ultimate cause. I've gained a little bit of weight-- up to 94 lbs. But...I just want to know what is wrong so that it can be treated and I can get better.

Symptoms I don't have: no joint pain or inflammation, no blood in the diarrhea, no heartburn.

Any thoughts? Thanks! :confused:

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7 Replies:

  • Any ideas??
    Seeking Help 12 Replies
    • December 27, 2008
    • 09:55 PM
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  • Any heart racing....differences in heart rate between standing and lying?
    pamelasmc 82 Replies
    • December 28, 2008
    • 03:57 AM
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  • I continue to be amazed why physicians suspect celiac sprue or crohn's disease in acute presentations. The onset in both cases is insidious in nature and the medical history typically smattered with clues. It was a smart move to test for vasoactive intestinal peptide and it would rule out MTC, wherein watery diarrhea is encountered in more than 30% of patients with this type of carcinoma. Paucicellular Lymphocytic Colitis would be among my choices to evaluate further. Can you tell me whether you had formerly, or presently, use NSAIDS with some degree of regularity? Either OTC or prescription. The Thyroiditis would also make me suspicious of PLC as well. Testing should be performed to clearly rule this out because symptoms can range from being very salient to patients being entirely asymptomatic. I'd be interested to know if subsequent lab tests of your thyroid return normal and whether any other symptoms begin to arise. Please keep us posted. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • December 28, 2008
    • 04:40 AM
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  • Dr. Cottle,Thank you for your reply and for sharing your ideas!Paucicellular Lymphocytic Colitis would be among my choices to evaluate further. Can you tell me whether you had formerly, or presently, use NSAIDS with some degree of regularity? Either OTC or prescription.I have only used OTC ibuprofen for menstrual cramps-- generally for 3-4 days per month. I don't use any other NSAIDs.I can't find much info about PLC online, but from what I can find, it looks like the way to diagnose it is to do a colonoscopy with biopsies from all areas of the colon...and then specifically look for microscopic colitis. Is that correct? I had a colonoscopy, but the only biopsies were from the rectum (because that was the only area that looked visibly inflamed). I'd be interested to know if subsequent lab tests of your thyroid return normal Me too! I'm scheduled to have thyroid levels checked again at the end of this week. I don't notice a significant change in how I'm feeling from when my thyroid levels were normal (July)...to abnormal (Oct)...to less abnormal (this month). Thanks again!
    Seeking Help 12 Replies
    • December 28, 2008
    • 07:15 AM
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  • Any heart racing....differences in heart rate between standing and lying?Some heart racing...but it's more like my heart "jumps." It's kind of hard to explain. I don't think there's a difference between standing and lying, but I do tend towards orthostatic hypotension.....and just hypotension, in general. When I was hooked up to the heart monitor for my endoscopy, the nurse commented that heart wave printout was odd. When I asked what that means, she said, "Well, it doesn't necessarily mean anything. It's just the type of printout we normally see after someone has had a heart attack."
    Seeking Help 12 Replies
    • December 28, 2008
    • 07:19 AM
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  • dear writer: i developed chronic diahhrea about five years ago. in three hours i was on the pot 18 times. sometimes, i used the little room 100 times in a day. liquid. explosive. uncontrollable. no warning -- 5-8 seconds maybe. you cant leave the house. cant go to private houses (too loud, too smelly, too embarassing). cant do anything. within a few months myriad iatragenic conditions DEVELOP. with speedy bowels, loose juice, YOU CANNOT ABSORB NUTRIENTS. PERIOD. DEFICIENCIES BECOME RAMPANT. NO NUTRIENTS CAUSE -- NO ENERGY!!! YOUR THYROID IS A VERY VERY VERY IMPORTANT MASTER ORGAN. IF IT IS MESSED UP, THE WHOLE SYSTEM IS MESSED UP. I DEVELOPED PAIN CONDITIONS. MY JOINTS, MY MUSCLES, HEADACHE, MY SKIN, ELECTRIC SHOCK-LIKE PAIN RIPPLED THRU MY SKIN, SKIN ON MY FACE/HEAD FELT LIKE ID BEEN SCALDED. I WAS WEAK, EXHAUSTED, DEPRESSED, AND BECAME HOPELESS. YESS, I SAW DOCTORS: ENDOCRINOLOGISTS. REUMATOLOGISTS, CHINESE-MED DOCTOR, GASTROINTESTINISTS, AND PSYCHOLOGISTS. THE DIA AND ALL THESE SYMPTOMS CONTINUED FOR FOUR 1/2 YEARS. YESSSSS I HAD TESTS. BLOOD, ENDOCRIN, HEART, X-RAYS, ULTRA-SOUNDS, A TOTAL-BODY-X-RAY, MERCURY/LEAD/OTHER HEAVY METAL TESTS. THE DIE IS UNDER CONTROL NOW, ALTHO I WAS DIAGNOSED WITH COLOGENOUS-COLITIS. DIE WAS DUE TO THICKENING OF THE WALL OF THE COLON, COULDNT REABSORB THE WATER, SO IT WAS SHOOTING OUT OF ME CONSTANTLY -- UNCONTROLLABLY. THE FANNY DR SAID THAT IS WHAT CAUSED THE DIE. I SAY "WRONG." THE CHRONIC DIE CAUSED THE THICKENED COLON WALLS. NOT ONE DOCTOR SUGGESTED TESTING MY NUTRIENT ABSORPTION == WHATS GETTING INTO MY BODY?? I WASNT DEFICIENT IN ONE THING, ---, BUT DEFICIENT IN EVERYTHING. MY BODY WOULD NO LONGER ABSORB NUTRIENTS. COULDNT. DOCTORS DO GET TIRED OF YOU. THEY FEEL LOUSY THAT THEY CANT FIX YOU. IF THEY CANT CUT IT OUT, OR GIVE YOU A PILL TO CURE YOU, THEY HAVENT MUCH LEFT IN THEIR BASKET OF TRICKS. MY PAIN IS GONE. THE DIE IS NOT AN ISSUE NOW. WHAT DID I DO??? READ A LOT. I RESEARCHED A LOT. AND I STEPPED OUT OF THE BOX. 1) GOT RID OF CORN WHEAT SOY AND ALL WHITE PROCESSED FOOD. PURCHASED ONLY ORGANIC. ORGANIC, ORGANIC, ORGANIC. I VISITED A REPUTABLE HEALTH FOOD STORE AND PURCHASED BODY CLEANSER. YOU KNOW, TO GET RID OF TOXINS, METALS, CHEMICALS, WHATEVER. I PURCHASED LIQUID CAPSULE ORGANIC MULTIVITS. LIQUID ORGANIC CAPSULE MINERALS. ORGANIC ENZYMES. ORGANIC DIGESTIVE ENZYMES. LOTS OF ORGANIC BROWN RICE. WHOLE ORGANIC MILK. AND I WENT TO THE CHINESE DOCTOR (25YRS OF PRACTICE IN CHINA). SHE SUBSCRIBED HERBS,,,,PACKAGED THEM UP,,,,SOLD THEM TO ME. SHE GAVE ME ACCUPUNCTURE SEVERAL TIMES A WEEK. SHE TOLD ME I WAS CHEMICALLY POISONED. TOXIC. YOU SEE, I HAD ALWAYS DRANK AT LEAST 10 - 14 CANS OF DIET COLA EVERY DAY....SWEETENED WITH ASPARTAME (THE BLUE SUGAR). AND I ELIMINATED MSG TOTALLY. MSG AND ASPARTAME.......LOOK THEM UP. THEY ARE IN EVERYTHING ... AND WHEN WE EAT THEM THEY BECOME "EXCITO-TOXINS" IN OUR BODY. AND DEPENDING ON HOW MUCH WE EAT, WE BECOME TOXIC. YOUR BRAIN DOESNT WORK RIGHT, YOUR ORGANS, YOUR INTERNALS, YOUR BLOOD, AND YOUR GASTRIC SYSTEM. GO TO earthclinic.com. RESEARCH. I SENT HAAIR SAMPLES TO LABS FOR ANALYSIS. I HAD NO NUTRIENTS, AND, I WAS TOXIC. PESTICIDES, HERBICIDES, PLASTICS, FIRE RETARDANT, BENZENE, AND ON AND ON. I PURCHASED A SOLO-FLEX VIBRATION PLATFORM ($400).....IT REDUCED THE PAIN BY 50%. I STARTED ON ARMOUR NATURAL THYROID, REDUCED MUCH DIE. VEGGIES, FRUIT, JUICE, GREEN LEAFIE, SEAFOOD, CHICKEN,... EAST-INDIAN PHYSICIANS WHO KNOW AYERVEDIC MEDICINE. CHINESE PHYSICIANS WHO KNOW CHINESE MEDICINE. GOOD LUCK TO YOU. I HAD DRAWN VERY NEAR TO SUICIDE, I HOPE YOU ARE STRONG...MAKE A PLAN,,,, AND FORCE YOURSELF TO CURE YOURSELF. SADLY, OUR ALLOPATHIC MEDICINE HERE IN THE US CANT FIX US IF WE'VE BEEN POISONED.
    loulou 3 Replies
    • December 28, 2008
    • 10:31 AM
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  • Update:I saw my local GI today. My throid levels, which had been improving, are back to indicating the far hyper end of hyperthyroidism. I'm not sure yet what they're going to do about that. (I think the Mayo endocrinologist is going to decide if I need anti-thyroid medication.) I brought up the lymphocytic colitis idea, but the GI just kind of dismissed it. He said that he does think that I have a systemic autoimmune disease, but he is unsure what it is and that we may need to just wait. He ordered a 72 hour fecal fat/weight test, which I think is to test for malabsorption. He also wants me to return to the GI at the Mayo Clinic.I have gained some weight (though still not up to 100 lbs), but I'm finding these answers less than satisfying. Though I realize, there may not be clear answers at this time.
    Seeking Help 12 Replies
    • January 13, 2009
    • 06:11 AM
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