Gastro Pain, no answers

[Deetie]

I have pain in upper right and left quadrant. My gallbladder has been removed but pain is worse since. Also have pain around belly button and severe in upper left quadrant. On a scale of 1-10, the pain is often at a 10. I get severely bloated (look 8 months pregnant), my hands swell. My eyes and eyelids swell. Sometimes my left hand won't bend when I wake up. My handwriting goes to ****. My eyesight gets worse and sometimes my eyes look like there's no one inside me.

I've had a CT scan with contrast, an endoscopy, a colonoscopy which shows a slightly enlarged liver, a cyst on my kidney, and diverticulitis on sigmoid colon. I have Hashimoto's thyroiditis, a granular rash on my back, fatigue, muscle and joint aches and pain. I cannot handle wheat or anything with preservatives or in a bottle, bag, or box.

I have hydradenitis suppurative which flares with any kind of additive or preservative. Family history of crohn's and auto immune disease. I hurt all the time. My doctor tells me to get off fat. She doesn't even mention wheat which is the biggest killer.

I've been tested for food allergies, all negative, but my doc says that doesn't mean anything. I know I cannot eat wheat or anything with wheat. But since gallbladder has been removed, things with fat make my right quadrant hurt. And that includes vegetable fat.

So between getting off anything with wheat or wheat products, fat, and anything in a box, bag, or bottle, i am left with only  fish and white meat, fruits and veggies. I am concerned about malnutrition problems. My gums bleed but I don't have gun disease. I'm able to eat fewer and fewer foods without severe pain or reaction.

What do I do next? A university hospital? Get tested for Celiac disease? Where do I go next.

[Kevin Pho, MD]

You have had a pretty good evaluation.  Further tests can be considered including a gastric emptying scan looking for gastroparesis.  You can also consider a 24-hr pH study with esophageal motility tests to look for GERD as well as esophageal motility disorders.  

Blood tests looking for celiac disease can be considered if there is diarrhea or intolerance to foods containing gluten.  

I would also consider Sphincter of Oddi dysfunction - which can manifest as gallbladder-type symptoms in those who have had their gallbladders removed.  This can be evaluated with an ERCP including Sphincter of Oddi manometry.

These options can be discussed with your personal physician or gastroenterologist.

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.

Kevin, M.D.
kevinmd_b

[myproblem]

Get tested for celiac disease. IMPORTANT - do not just settle for the blood test. Because you are already avoiding wheat, it probably will not work. You have to get the intestinal biopsy. This is an outpatient test.  Another choice if you can find a hospital that offers it, is the camera pill. This will photograph your entire digestive tract except the large bowel. Celiac disease in it's severe form can cause all the problems you describe, including the rash. Be aware that anything that says it has modified food starch contains gluten. Also barley, rye, and oats contain gluten. It's not actually in the oats, but they're processed on the same equipment, and are coated with it. Dark green veggies are a good choice. They have iron and vitamin C. You can't absorb Iron without vitamin C. I would think that lean cuts of beef would be okay too. Good luck, keep us posted.

[Deetie]

Thanks, My Doc and the other commenter. (I lost the page and cannot remember your name.)

I'm into year 12 with this. My whole intestinal tract feels like little men have cut it apart with shards of glass. My gut doctor is dismissive, with looks of intense interest, but really, if she knew, she'd say what she thinks. She prefers to say nothing.  At least my last gut doc had the guts to say, "I just don't know. Don't give up." Don't send me home with a diet that is so ridiculous that I look at my doc and just laugh.

I could go to the university hospital and spend every waking hour and day off searching this out. And thousands of dollars. I could. After two gut docs, three GP's, an allergist, a neurologist, 2 surgeons, and myriad other folks, I think that I will retire to perhaps having FORMENT (is that spelled right?)
disease where one day my whole
colon might just explode and someone will say, "Gee whiz, there was a problem here."

Fact is, in this health system called Health in America, you must really often be at the point of dying before anyone gets serious. And doctors who don't know what the heck is going on don't say so. They don't have the humility to say they don't know. And dismissing a patient as if they are a small child does not help the patient. AT ALL.

Sorry for the hostility. After spending almost $25,ooo to figure this out, I'm exhausted, disgusted, tired, and just don't really want to spent another $25,000.

I am appreciate of the doctor's answer. Please excuse my hostility, doc. It's not directed at you. It's directed at a system that wants you to be completely, wholly dying or near dead before they respond. It's not about doctors. It's about  a really stupid system within which I am stuck and can find no way out.

Deetie

[Duchess47]

I have been diagnosed with Gatroparesis which is another term for "slow stomach emptying".  A gastric emptying scan can determine if you have this disorder.  It is caused by damage to the vagus nerve from: surgery, diabetes, hypothyroid, virus, certain medications.  Symptoms are bloating, feeling full very quickly, nausea, GERD, stomach pain (sometimes severe)and constipation.  Fiber is the worst thing for it.  Celiac disease is usally tested when they do a colonoscopy.  Treatment for Gastroparesis is eating small amounts of food, not drinking liquids while eating, no sugar, fat, fiber.  And medication.  It took a little bit of time to diagnose me, but I have a long history of gastro. problems and since I have already had gall bladder removed, appendix removed, complete hyterectomy, that ruled out quite a bit right there.  Goog luck

[helpthepain]

My daughter is 14 1/2yrs old and has been suffering from severe upper pain. She has every test with results of nothing. This has been occuring for 1 1/2years. The first specialist insisted it was some type of indegestion so after every medication I have now switched doctors. In the last 4 months she has been constipated and with the doctors advice she has had clean outs with golytle and another time with half lytle. Both cleaned her out but the pain has stayed. The new doctor has now had her on Glycolax which worked great until we tried to take her off and she had a relapse. she is back on it with no help or relieve the pain however she is having bowel movements. The latest was Zelnorm at the same time of the Glycolax which made her have bad cramps and very loose bowels. As of today she is off both until her doctors apt on thurs. She is scheduled for a scope the end of this month. The doctor took some blood and said her IGA level is low to none and means nothing. Can this be true? I looked up a few things and one of the signs for low IGA is thrust of the tongue. My daughter had what the doctor and dentist called geographical tongue about two years ago, now Im wondering if this was the first sign. Im also curious she was on Zarontin from the age 5-12yrs could this have any affect on her? Im so lost and confused and upset seeing her in pain every day where she cannot even participate in her softball practice. I need answers.