Two Months Undiagnosed, Doctors Stumped

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My apologies as this is going to be a long one, but I am at very frightening stage in my life and unsure where to turn. I am just wondering if anyone here has ever had this sort of situation with similar tests results from doctors.

I’m a 24 y/o male, 6’2 started out at 172lbs. I have a history of IBS and GERD following a bout of a stomach virus 15 years ago. It took about 5 years to overcome the symptoms and finally live a normal lifestyle free of these issues ever again. I don't drink, I don't smoke, do drugs, or was on any kind of medication.

Two months ago I had an extremely uncomfortable cramping, nausea, weakness in the legs followed by an awful black bowel movement while I was at work. The symptoms became extremely severe over and hour where I was too weak to even walk, collapsed and was sent to the ER from how sick I felt. An Endoscopy revealed "Diffuse mildly erythmetaous mecosa without bleeding found in the gastric body and gastric antrum." No H. Pylori, no evidence of intestinal metaplasia, and no evidence of microorganisms. I was given Lanzoprazole 30mg to take every morning which did not seem to help at all. As the next two weeks continued I lost weight as I was constantly nauseated, in pain and bowel movements were soft light-green with tons of mucus. My stomach and chest was extremely painful to touch during flare-ups. My breast plate was constantly in pain and swelling, and every time symptoms would flare up I would be constantly urinating making staying hydrated extremely difficult along with awful brain fog and dizzyness. I could also hardly walk. There were parts of the day where I’d get energy but it was very short lived and would often be replaced by flu-like fatigue symptoms.

The gastro doctor then prescribed vsl #3 for every day as well as Hyoscyamine which also did not seem to make any difference. There was a white substance on my tongue which they assumed to be candida so I was also put on Nystatin for 14 days to stop candida overgrowth. Made no difference. I followed the anti-candida diet for this time as well. They then said “We’ve done all we can” and that was that. Blood tests were run by the GD and my PCP showed clear abnormalities but they said "they're inconclusive." Tests all came back negative for celiac disease, diabetes, food allergies, chron's, pancreatitis, or parasites in stool. Abnormal blood test results are below

RBC: 6.12 High

Hemoglobin: 18.2 High

RDW 34.2 Low

BUN/Creatin 6 Low

Potassium: 3.3 Low

Protein: 8.2 High

Albumin: 5.5 High

HCT: 49.2 High

U SpGrav 1.001 Low

Immunoglobin E 189 High

Chlamydia pneumoniae IgG 1:256

A CT scan of the abdomen was done that showed ileum and jejunum poorly distended, meseenteric lymph nodes, likely reactive, calcified hepatic granulamas and a 1.5 probably cyst in my left kidney. Small bowel was unremarkable. The same answer here was that this was inconclusive. A gastric emptying test was also done and showed to be within normal range.

After two months I've lost 30 pounds, all of the symptoms still persist. Stools are still very abnormal. I'm at risk of losing my newly gotten job, I can no longer be the person I was and feel like I’m withering away each day. I have never experienced anything like this even from my experience with IBS and GERD. It’s another month before I can see a doctor again which will almost likely lead me to the same spot. Is this just awful anxiety? (I’m anxious of course because I’ve felt like my body has been fighting an infection for two months) If anyone has any information, or even just for morale, I feel like I'm living in a nightmare.

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  • Posted

    Hi Daniel, in your situation the preferred treatment for most people suffering from both acid reflux and IBS is lifestyle and dietary modification. People with IBS or GERD may find relief by losing weight, quitting smoking, and learning stress-reduction techniques such as deep breathing, exercise, or yoga. Medications that focus on the management of IBS vary greatly depending on whether the main symptoms are constipation, diarrhea, or both. Your doctor can help guide your treatment. However, if the patient has allergies of taking medications sometimes it can make even worse the symptoms. All you need to do is to find the best method you can try to ease your condition. You need also additional Enzymes in your body why? because, food has to be broken down from things like steak and broccoli into its nutrient pieces: amino acids (from proteins), fatty acids and cholesterol (from fats), and simple sugars (from carbohydrates), as well as vitamins, minerals, and a variety of other plant and animal compounds. Digestive enzymes enable food to be broken down into nutrients in our bodies to produce energy, and repair and maintain our physical structure and function. If we don’t have enough digestive enzymes, we can’t break down our food. Which means even though we’re eating well, we aren’t absorbing all that good nutrition. That's all my insights in your condition. If you have other questions just make a reply or personally message me. Stay healthy and take care. 

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    • Posted

      Thank you so much for the reply! I've been doing several dietary modifications from FODMAP, anti-candida, and Keto diet for the past 2 months and I haven't noticed any difference really. My main symptoms is the nausea and fatigue that's making daily activity difficult and it's a battle for every meal to get nutrition in when I feel the need to vomit. I'll certainly try Enzymes (I've found super papaya enzyme plus) and I'll see if the medications I've been taking are actually causing allergic reactions, that could be contributing factor.

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  • Posted

    Hi , just read your post and ibd keeps jumping out at me , altho you have other heath issues and some different symptoms to what i had that damned word pops up in my face like a wasp buzzing around my face, im terribly unconfident with that diagnosis as its given out too commonly, however my experience naturally makes me be very biased , i was diagnosed in my teens with ibs, it was never ibs, i went docs a ridiculous amount of times throughtout the year for 20 years had tests had scans had cameras up my bottom had laparoscopys but on the womb as i had several other symptoms with the ibs symptoms but lost weight initially and stayed small couldn't eat alot and when i did eat or drink for that matter it churned my gut up pretty quickly, awful cramping in abdo, back pain leg pains would all come before bowel movements and never can i remember a 'normal' stoll passing, was black or green with mucus and near years on i noticed undigested food ? Belly used to swell then go back to normal but im female so womanly things got confused with that too ,anyway a year ago my bowel perforated , will add twice in the years before i ended up in a hypoglemic stated due to dehydration? Vomiting and pooping and not keeping anything in , plus many admissions due to nad headaches making me vomit for days,, so as i say bowel popped :o i didnt know i walked into docs with a pulled muscle in right side and they assumed appendix, hospital went in with camera and found perforation and this turned out to be diverticulitis , missed for all.those years . So frustrating when we trust our health carers. I hope for you it gets sorted sooner rather than later , ive been consumed with it all and i feel the best of my years have been wasted , so be persistant and dont stop til you know whats going on

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    • Posted

      Thank you so much for the information! The way you explain your stools sound extremely similar to my situation and my pain always seems to be in the same spot. Whenever a "flare-up" happens my stomach becomes extremely inflamed and sometimes I get pain in the same exact spot right to the left of my bellybutton from my perspective. The nausea that comes with all of this is the worst since I just can hardly keep any nutrients in my body. I feel like I just need to keep pushing with my doctors to test or look for problems in those exact spots. I totally feel your pain too! It's so hard to keep myself mentally sane every day, this stuff consumes you in every way possible.

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