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Avatar universal

Suffering from unknown illness - Please help!

I am 19 yrs old, and I have been to several doctors, including two gastroenterologists and even a gynecologist.  Every time I eat, I have severe abdominal cramping and bloating, and sometimes it is a sharp, stabbing pain that comes and goes.  I have been to the emergency room several times, and this has been going on for 5 years.  I eat healthy nutritious foods and do not have an unhealthy diet, and I can't seem to pinpoint it on a specific food.  I have GERD and acid reflux, and am currently taking medication for that.  I also have ovarian cysts, and the pain does seem to be worse during my menstrual cycle - which is why I have been to a gynecologist.  I don't know if the two are connected or not.  I have been dealing with this pain every day, some days a lot worse than others.  I am often nauseated, and I can no longer run cross country and track because the pain is so severe.  I have had x-rays, CAT scans, a colonoscopy, an endoscopy, blood tests, ultrasounds, upper-GI tests, basically everything!  And since doctors see me as a lost cause, I'm left to finding out what's wrong with me by myself, hence the reason I am in college to work in the health field.  Any advice or knowledge would be greatly appreciated!    
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Avatar universal
I am sorry to come up with my parasites again...I had constant nausea, sporadic vomiting, severe bloating (looked like 9 months pregnant) and a hot, stabbing pain left of the belly button, which got worse over day and during my period. I lost weight even though I ate lots, and I got the vitamin B12 deficiency anaemia even though I ate tons of meat. I was tired 24/7, very thirsty and had weird noises in my belly. For 15 months.
I went through all the tests, as you did.
The final diagnose? A parasite called enterobius vermicularis, or pinworm/threadworm. very common in kids, but not so much in adults. Nasty.
The test for that is either the scotch tape test, or a homemade test where you eat at least 1/2 tsp cayenne pepper for three days. On the third day or the fourth you should be able to see parasites, if you have them.
If so, get deworm meds, take it for 3 rounds, each 21 days apart, eat high fiber, very low starch and sugar. Good luck!
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Avatar universal
An upper-GI would most likely pick up on SMA.  Also, SMA almost always has severe weight loss as one of the main symptoms.  I don't think this is what you have.
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Avatar universal
I hate to tell you this but I strongly think you have this. http://www.youtube.com/watch?v=qAX-sZKgU-E
I remembered seeing all of these symptoms in a video I was looking at, and I just searched for it again. Watch part 1, 2, and 3 if there is a part 3. This is a very dangerous condition. Please watch it!

I sincerely think this is the problem. Much of the time this is misdiagnosed. Please watch. I'm begging you.
Helpful - 0
Avatar universal
The medicine that you are on can decrease absorption so if you are having issues with fatigue you should have blood tests to check your levels of various things including checking for anemia.  If you are having problems with bowel movements you can talk to your doctor about doing a low fiber diet and for constipation trying a laxative (like miralax) or something natural (like prune juice).  Blood tests can check for gluten intolerance but they aren't as accurate as a biopsy of the small intestine checking for celiac disease or eliminating 100% of all gluten from your diet for 2 months.  Most doctors will never check for lactose intolerance, it is better to just try eliminating 100% of all lactose from your diet for 2 weeks to see if it helps.  Slightly elevated alipase and amylase levels are most likely not something to worry about or be concerned about.
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Avatar universal
Also - I forgot to mention.  I have had tests come back saying that my amylase and lipase levels were slightly elevated.  I got a CAT scan of my pancreas etc., but after finding nothing the doctor shrugged it off, and basically said I must have IBS, but never really diagnosed me.  Should this be a concern?
Helpful - 0
Avatar universal
Apparently I've been tested for gluten intolerance from blood tests?  And I'm not sure about lactose intolerance, but I feel that my doctors would have checked that first before making me go through extreme tests, but who knows.  I have tried to keep a food diary, but literally nothing specific ever comes up.  I can eat something one day and not have abdominal pain, and then when I eat the same thing a different day, I can barely walk because the pain is so bad.  I have had tests with results showing that I had an ovarian cyst, but it popped because there was only ovarian cyst fluid, so I don't know if I have them all the time.  I have been on birth control pills because apparently they help keep cysts from forming.   Thanks for your help, and I hope you find out the cause of your gastritis too!
Helpful - 0
Avatar universal
I am always tired, and no matter how much sleep I get I am still tired.  I can barely stay awake for five hours, and I need to take naps everyday to function normally - and then I learned in my nutrition class that the medicine I'm on decreases absorption of Vitamin B, etc. but I am not sure if it's related.  I was just curious considering I don't ever have trouble falling asleep, and I don't believe I have sleep issues or anything - just abnormally more tired than everyone else I know.  I also don't want to end up with osteoporosis when I'm older because of not absorbing calcium correctly.  Also, I tend to have problems with bowel movements, etc.  So instead of a high fiber diet, what should I do to help constipation?
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Avatar universal
I went though many years of misdiagnoses and spent hours researching things on the internet and reading my mom's medical textbooks (she is a doctor), which was how I learned everything.  A diet low in fiber can't "cause" constipation, but a diet high in fiber can help constipation.  Fiber adds more "bulk" to your stool which can help with constipation.  However, fiber can be a nightmare for someone suffering with gastroparesis.  Prevacid, and other PPI's, can cause various problems with absorption.  You could try a H2 blocker instead of a PPI to see if you get enough relief from your GERD symptoms from that.  Are you having problems with low calcium or low B12?
Helpful - 0
Avatar universal
Well I sympathise with you as I have very painful gastritis and I don,t know the cause. I also have reflux and a hiatus hernia.  You can eat your food ok which is good.  Pain isn,t and I know about that.  Have you had any tests for gluten intolerance or lactose intolerance?  It may be something like that.  I would eat a low fat diet too and cut out some foods you feel worse on.  The doctors tell you to keep a diary of what upsets  your digestive system of what you eat.  I would get checked for all probabilities even parasites or leaky gut syndrome.  It should surface eventually whats wrong.  I had to see a hormone specialist,an endocrinologist as my prolactin level was high. I wonder if my hormones affect my stomach.  Ask about those ovarian cysts too if they should be removed.  I think they can give you indigestion but you will have to look that up.  Best wishes
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Avatar universal
I'm surprised you're only 19.  Just wondering, but how do you know all of this information?  I have a few other questions to ask too.  I was told that a diet low in fiber can cause other problems such as constipation, etc.  Also, since I have GERD and I am taking Prevacid, I heard the medication decreases the absorption of calcium and vitamin B12.  Any advice on how to fix these issues?  Thank you!  
Helpful - 0
Avatar universal
If you are not diabetic, doctors often overlook gastroparesis and it goes misdiagnosed for years.  I am also 19 with gastroparesis.  High-fiber diets usually help constipation whereas low-fiber diets are helpful for gastroparesis.
Helpful - 0
Avatar universal
Thank you for you help!  I have never heard of gastroparesis before, but it makes sense considering I can be full for hours and even until the next day sometimes.  I definitely do notice that small meals throughout the day helps too.  I'm surprised none of my doctors ever mentioned this, one even said to have a high-fiber diet so I tried that before, but never a low-fiber diet.
Helpful - 0
Avatar universal
Welcome to the gastroenterology community!  You could have gastroparesis which is slow emptying of the stomach.  I would recommend talking to your doctor about a gastric emptying scan.  In the meantime you can try a low-fiber, low-fat diet, and many small meals throughout the day to see if that helps.
Helpful - 0
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