Discussions By Condition: I cannot get a diagnosis.

Severe and Unpredictable Abdominal Pain

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: kdb2007kdb
  • March 11, 2008
  • 00:04 AM

My husband has been to several doctors and none of them care to investigate his symptoms deep enough. Any help would be appreciated.

Oct 2006 - He wakes up at about 2 in the morning with severe abdominal pain. He is only 27 and is in good shape, always concerned with diet and exercise. I rush him to the hospital. I think he is having a heart attack. He is actually crippled from pain and screaming. When I hit bumps on the drive, it appears to rip through his body.
Emergency room runs all tests. Blood ok, but urine shows a slight elevation of keytones. They were not concerned about it. He does eat a high protein low carb diet. We assumed (for that reason) that kidney stones were the obvious answer. None showed up on xrays or ct scan.
Pain dulled and after 2-3 days it was totally gone.

Spring 2007 - Scan with dye and barium drink performed. No diverticulitis. Nothing unusual.

Sept. 2007. Same old story. Wakes up with extreme pain, not predictable with diet. Go to emergency room. Same tests. No abnormalities. Sent home after pain shot.
Return in 4 hours to emergency room. Pain still intense. Given pain pills . Tests repeated again. Blood, urine and xrays clear. Pain dulls and leaves after about 2-3 days.

March 2008- Wakes up to intense stabbing pain - Its always in the middle, right below ribcage. Radiates downward toward pelvic bone. Doctor this time thinks its a gastric problem. No answers at all. Not even a guess. All blood, urine and xrays come back normal. Doctor does not understand the intensity of the pain.


Doctors look at us like we are lying, pill chasers. They do not believe in the pain. My husband says it feels like he is being stabbed with a knife in the center of his abdomen. When the pain is at its worst, he shakes and sweats. Blood cell counts are normal always.

We cannot understand why it keeps happening and we cannot relate it to diet. Generally, my husband is careful about his diet, always watches trans fat, levels of fat, very very few fried foods.

Every now and then he does get acid reflux or heartburn- never diagnosed. This pain seems to be much lower in his stomach than what hearburn is. That is why our initial thought was kidney stones.

Any help or suggestions of testing would be greatly appreciated.

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18 Replies:

  • I have had the same kind of pain for a year now with frequent visits to the hospital. They are sure its my gall bladder and I should be having it removed this month. I am also very young seeing as I am only 20. Definitely go see a gastro specialist where they can check for everything. I feel his pain but dont give up! I learned you really have to fight with doctors to make them believe you and sometimes it takes a few different ones to finally get a good one. I wanted to mention that if they dont believe you or him about being in so much pain tell them to check his blood pressure because when youre in pain your heart rate skyrockets. Just to let you know.Julie
    Anonymous 42,789 Replies Flag this Response
  • Gall bladder disease, pancreatitis (did they do an amylase/lipase blood test?) Biliary colic? I think a G.I. doc needs to look down his throat all the way to the common bile duct. (An ERCP).
    rad-skw 1,605 Replies Flag this Response
  • Since the signs of ketosis are nausea, vomiting and stomach pain, maybe a low-carb diet is not right for your husband. Add some complex carbs.
    rad-skw 1,605 Replies Flag this Response
  • I am a 23 year old female who also used to wake up in the middle of the night with intense stomach pains. The pain was so bad that I almost passed out. I never went to the hospital, because unlike your husband, my pain subsided fairly quickly - in a few hours or so. However, I found out that the cause to my stomach pains was stress. During one of my "episodes," I remembered that I was having a particularly stressful dream about the graduate physics course that I was taking at the time. Does your husband have a very stressful job? Does he has ways of dealing with the stress, or does he just "bottle it up?" I don't know if this will help, but good luck to you and your husband!
    eng_girl 3 Replies Flag this Response
  • I just received my husbands medical records. I am looking for a specialist to take him to that will not require a 3 month wait. His medical reports mention punctuate pelvic calcificationsphlebolithsdistal ureteral calculus Anyone heard of these? We are monitoring his diet more, but it really doesnt seem to cause or effect the pain. Ill update as i know more
    kdb2007kdb 5 Replies Flag this Response
  • I woke at 3:00 AM with extreme pain lower abdomen. Called 911 and rushed to hospital. CAT scan showed acute diverticulitis and a micro perforation. Spent 4 days in hospital on morphine while they pumped antibiotics into me. The next 10 days at home consisted of more antibiotics, vicodin, and a liquid diet followed by a low fiber diet. A resection of the colon (surgery) has been highly recommended to me.I was advised to have a combination endoscopy/colonoscopy to see what is really going on inside. Making preparations now to have these tests done. I am hoping NOT to find any cancer.I never had any advanced warning of any problem. The only thing I had noticed over the previous 2 months was that I became very full after eating only a very small amount of food. And I had a little nausea once in awhile.
    Anonymous 42,789 Replies Flag this Response
  • He needs to get off the ATKINS DIET pronto! That diet can be dangerous for some folks, it is unbalanced and not healthy. It can trigger a disease called porphyria which has SEVERE ABDOMINAL pain as its primary symptom. You also should look into porphyria as an explaination for what could be causing his severe abdominal pains . Many people carry a gene for porphyria and never know it until they trigger it by fasting, dieting, take a medicine etc., etc. I tried Atkins several times.... each time ended up sick with porphyria attacks. Atkins diet isn't good for some other medical conditions also.... please eat carbs instead. There might even be a warning in his book for folks with porphyria to not do his diet... I threw the book away so I can't look to see now.tdwi ;) http://www.wrongdiagnosis.com/p/porphyria/symptoms.htm http://www.porphyriafoundation.com/about_por/index.html http://www.anzca.edu.au/jficm/resources/ccr/2003/september/Case4a.pdf My husband has been to several doctors and none of them care to investigate his symptoms deep enough. Any help would be appreciated. Oct 2006 - He wakes up at about 2 in the morning with severe abdominal pain. He is only 27 and is in good shape, always concerned with diet and exercise. I rush him to the hospital. I think he is having a heart attack. He is actually crippled from pain and screaming. When I hit bumps on the drive, it appears to rip through his body. Emergency room runs all tests. Blood ok, but urine shows a slight elevation of keytones. They were not concerned about it. He does eat a high protein low carb diet. We assumed (for that reason) that kidney stones were the obvious answer. None showed up on xrays or ct scan.Pain dulled and after 2-3 days it was totally gone. Spring 2007 - Scan with dye and barium drink performed. No diverticulitis. Nothing unusual. Sept. 2007. Same old story. Wakes up with extreme pain, not predictable with diet. Go to emergency room. Same tests. No abnormalities. Sent home after pain shot. Return in 4 hours to emergency room. Pain still intense. Given pain pills . Tests repeated again. Blood, urine and xrays clear. Pain dulls and leaves after about 2-3 days. March 2008- Wakes up to intense stabbing pain - Its always in the middle, right below ribcage. Radiates downward toward pelvic bone. Doctor this time thinks its a gastric problem. No answers at all. Not even a guess. All blood, urine and xrays come back normal. Doctor does not understand the intensity of the pain. Doctors look at us like we are lying, pill chasers. They do not believe in the pain. My husband says it feels like he is being stabbed with a knife in the center of his abdomen. When the pain is at its worst, he shakes and sweats. Blood cell counts are normal always. We cannot understand why it keeps happening and we cannot relate it to diet. Generally, my husband is careful about his diet, always watches trans fat, levels of fat, very very few fried foods. Every now and then he does get acid reflux or heartburn- never diagnosed. This pain seems to be much lower in his stomach than what hearburn is. That is why our initial thought was kidney stones. Any help or suggestions of testing would be greatly appreciated.
    TaylorDeelwithit 382 Replies Flag this Response
  • I will look into that disorder. I am still pouring over his medical records to search for clues. I might have posted this earlier but... He has normal white blood cell counts, but a particular type of cell (as i understand) has been low. Its a white blood cell called a lymphocyte. For some reason, the doctors did not tell us this in 2006, or 2007. Why not? Now i call the clinic he visited just last week for testing, and they tell me his lymphocyte level was low as well, but his overall white blood cells were normal. The nurse says she would automatically think allergies. Does this sound normal? Should I worry? If you search for low lymphoctye level, all you cant find is horrible life threatening or life ending diseases. So i hesistate to rely on those results solely. However i wonder if this is a particular symptom of something other than allergies? Perhaps something digestive related? It worries me terribly.
    kdb2007kdb 5 Replies Flag this Response
  • porphyria is a metabolic disease in that the liver lacks an enzyme; 8 kinds of porphyria each one is lacking a different enzyme. Please tell me he is off the high protein low carb diet now. What meds is he on? I hope not statin drugs. I will look into that disorder. I am still pouring over his medical records to search for clues. I might have posted this earlier but... He has normal white blood cell counts, but a particular type of cell (as i understand) has been low. Its a white blood cell called a lymphocyte. For some reason, the doctors did not tell us this in 2006, or 2007. Why not? Now i call the clinic he visited just last week for testing, and they tell me his lymphocyte level was low as well, but his overall white blood cells were normal. The nurse says she would automatically think allergies. Does this sound normal? Should I worry? If you search for low lymphoctye level, all you cant find is horrible life threatening or life ending diseases. So i hesistate to rely on those results solely. However i wonder if this is a particular symptom of something other than allergies? Perhaps something digestive related? It worries me terribly.
    TaylorDeelwithit 382 Replies Flag this Response
  • I looked up punctuate pelvic calcifications and found tumors..seems like he needs follow up. Are they going to biopsy them? (Taylor, can you stop cutting all of the original message all the time...I find myself always having to scroll through it all several times..thanks..:D)
    Monsterlove 2,921 Replies Flag this Response
  • he is not taking drugs of any kind. does not drink. He is now enjoying carbs. Today he says he feels no pain at all. It just seems to be in these "attacks" that last most intense for 1-2 days and duller for 2-3 more
    kdb2007kdb 5 Replies Flag this Response
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  • The strangest thing is the doctors have never told us anything that is different from "he is normal" all tests are normal.. and so on.. I did see that about the calcification.. We have another appointment friday. I am going to ask about them.. Im taking his medical records with me to show all the little "normal" things that are not really so normal.
    kdb2007kdb 5 Replies Flag this Response
  • Punctate calcifications (when related to breast tissue) may be cancerous. But when in the abdomen are just little round stones, and pleboliths are stones in the stool. Seems he also has a kidney stone that is almost at the end of the ureter and ready to go into the bladder. Drink LOTS of water. Also look up abdominal migraine. Maybe he is pulling too much calcium out of his bones which is a endocrine problem. Look up the parathyroid gland.
    rad-skw 1,605 Replies Flag this Response
  • His mother does have thyroid problems. I wonder if it could produce decreased lymphocytes? I wonder about the increased BUN levels?
    kdb2007kdb 5 Replies Flag this Response
  • Don't you mean start cutting....:D I looked up punctuate pelvic calcifications and found tumors..seems like he needs follow up. Are they going to biopsy them? (Taylor, can you stop cutting all of the original message all the time...I find myself always having to scroll through it all several times..thanks..:D)
    TaylorDeelwithit 382 Replies Flag this Response
  • I have the same thing! I've been to specialists and the ER and they don't know what it is. I eat a pretty healthy diet and am young (24 years). Did you ever figure out what it is? My attacks have been getting worse and worse. And they are unpredictable... come every 2-5 months. I have gotten blood tests, stool tests, ultra sound on my pancreas, gall bladder, kidneys, etc. Everything is normal.Any luck for you?
    Anonymous 42,789 Replies
    • August 11, 2009
    • 03:33 AM
    • 0
    Flag this Response
  • update: after several endoscopy procedures and a colonoscopy, we have a "fairly" certain diagnosisA hernia around (or in) his stomach and ulcers. Cant believe it took so long to settle on this. It seems many foods irritate the problem including caffeine, tomato sauce, anything spicy, anything that swells (like pasta and rice) and overeating in general. He is doing better now though. No emergency room visits for a year. All this has just deepened my distrust for the field of medicine. I think we have invested around 10K in his stomach. Sickens me. this is with insurance.
    Anonymous 42,789 Replies
    • August 13, 2009
    • 00:08 AM
    • 0
    Flag this Response
  • My husband has been to several doctors and none of them care to investigate his symptoms deep enough. Any help would be appreciated. Oct 2006 - He wakes up at about 2 in the morning with severe abdominal pain. He is only 27 and is in good shape, always concerned with diet and exercise. I rush him to the hospital. I think he is having a heart attack. He is actually crippled from pain and screaming. When I hit bumps on the drive, it appears to rip through his body. Emergency room runs all tests. Blood ok, but urine shows a slight elevation of keytones. They were not concerned about it. He does eat a high protein low carb diet. We assumed (for that reason) that kidney stones were the obvious answer. None showed up on xrays or ct scan.Pain dulled and after 2-3 days it was totally gone. Spring 2007 - Scan with dye and barium drink performed. No diverticulitis. Nothing unusual. Sept. 2007. Same old story. Wakes up with extreme pain, not predictable with diet. Go to emergency room. Same tests. No abnormalities. Sent home after pain shot. Return in 4 hours to emergency room. Pain still intense. Given pain pills . Tests repeated again. Blood, urine and xrays clear. Pain dulls and leaves after about 2-3 days. March 2008- Wakes up to intense stabbing pain - Its always in the middle, right below ribcage. Radiates downward toward pelvic bone. Doctor this time thinks its a gastric problem. No answers at all. Not even a guess. All blood, urine and xrays come back normal. Doctor does not understand the intensity of the pain. Doctors look at us like we are lying, pill chasers. They do not believe in the pain. My husband says it feels like he is being stabbed with a knife in the center of his abdomen. When the pain is at its worst, he shakes and sweats. Blood cell counts are normal always. We cannot understand why it keeps happening and we cannot relate it to diet. Generally, my husband is careful about his diet, always watches trans fat, levels of fat, very very few fried foods. Every now and then he does get acid reflux or heartburn- never diagnosed. This pain seems to be much lower in his stomach than what hearburn is. That is why our initial thought was kidney stones. Any help or suggestions of testing would be greatly appreciated.I have the same symptoms and problems with doctors, especially in the emergency room. No one seems to believe that there's anything wrong with me because all the basic tests come back negative, but they've never checked my liver or gallbladder.It's a good idea to keep a diary of how long his attacks last, what kind of pain, foods eaten that day, bowel movements, urinary changes. Does anyone in his family have similar symptoms or any problems?Also does his blood pressure ever go up? Any other pain he experiences during an attack? Does he have a fever, or racing heart? Also see about having him tested for Acute Intermittent Porphyria.
    Anonymous 42,789 Replies
    • August 18, 2009
    • 10:07 PM
    • 0
    Flag this Response
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