Male sick for years
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cleaner2005 posted:
I need advice PLEASE. I have been sick 2+ years. Had colonoscopy,ultrasound,endoscopy,5+ blood tests,HIDA scan,sleep study,stool sample,CAT scan w/ contrast of ab. Obviously got the IBS & stress diagnosis but that was before tests, just did not agree. All results normal except slightly enlarged spleen. Opposite the side I feel slight pain/ pressure on. My doc said that slightly enlarged spleen was common not to worry or seek further tests with spleen. Symptoms before meds- nausea, dirraeh, foggy felling, no motivation, could not get out of bed almost felt sea sick, lack of energy, extremely bloated, stomach pain on right side, no appetite and all this would last from when I woke until about 3:00 pm. Then would 95% go away late afternoon.Very odd Now I am prescribed Hydrocodone and aderall. I have tried every antidepressant, nausea meds,librax, kolonopin and Xanax. I cannot even name them all. The only ones that worked were kolonopin and Xanax but eventually I became worthless. I can feel mostly normal each day but it requires quite a bit of Hydrocodone and takes a few hours for them all to kick in. The problem I am going to run into besides the addiction is my tolerance is building quickly to the Hydrocodone. Taken 4 a day for 5 months, but I really need more daily now.nothing can constipate me. Not even 8 librax and 4 Hydrocodone. I would have lost my job if not self employed. I have never been sick, never taken meds until this "disease". I ran 3 miles daily for 10 years. I am 38 year old male and 188lbs. When this started I weighed 200 but force myself to eat and the weight loss is recent. Last 6 months. Maybe from aderall or the fact I can barely stand the taste of alcohol anymore. So I hardly drink. Maybe 1-2 beers a day. Stopped drinking for 2 months and no change in sickness. To sum it up, I basically have all the symptoms of a pregnant woman. I went gluten free and bloating and heartburn stopped almost completely. But I don't have a gluten allergy. Has anyone had similar, serious problem like this? Some days I feel like a walking dead man and don't want to be around or talk to anyone. All this started before the meds. Please help
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ntended responded:
I'd stop alcohol completely, and drink water-lots of it. Good that you've gone gluten-free! Are you depressed? Getting any physical exercise? So many unknowns here...

Whatever you do, don't give up on yourself! You are a YOUNG MAN (38 is just the beginning) with a life to live.

Talk to other doctors. Get 2nd, 3rd, and 4th opinions. YOU are worth it, and someone will figure out what's going on.Just be relentless in your pursuit of a diagnosis.

Good Luck & HANG IN THERE.
 
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cleaner2005 replied to ntended's response:
Thank you for responding. I have hung in a long time just need an answer. Been to numerous docs but nobody thinks its a big deal except me. But I am the only one that has to live like this not them. Thanks again and your advice is much appreciated. Docs blow all off as ibs or stress . No depression but they tried that card too. No more test available according to my docs . Anything I do will be repeating previous tests.

Thanks again for your time in this response
 
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biancalthompson responded:
Sorry you fell bad.

Has a doctor look at your gallbladder?

I am 28 with gallstones and a spamming gallbladder. I am schedule to have it removed Jan 7.My first attack was in 2007. Was fine until April of 2013. I have symptoms for the last 8 months almost continuously. I have some of the symptoms your describing. My pain is located in the right upper abdomen just under my ribs, it radiates to the middle and back into my back and right shoulder. I am bloated, have no appetite,fatigued, nauseous, dizzy, have diarrhea and indigestion. I am taking Prilosec, Zantac, Tramadol, Norco, and Colace for what's going on with my gut. I am on a liquid diet right now because I just had another attack. I have been on a low-fat diet for awhile now, I had recently eliminated all diary and am considering either limiting or eliminating wheat/gluten from my diet hoping it will help with the diarrhea.

I hope this information helps and that you get to feeling better soon. Be persistent about your symptoms.
 
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cleaner2005 replied to biancalthompson's response:
I appreciate your response so much. I'll keep you in my prayers for this coming week. Did you have a HIDA scan? Assume yes. Mine came back normal. My dad died young but I do know that he had his removed. Norco I believe is my only solution at this point. More so mentally than for the pain. But my right side mid rib area has felt puffy, some what painful for years. I have heard many stories about how much better people feel after gallbladder removal and surely you will have the same results. I have all your symptoms except minimal pain , and matter of factly been on all the same meds and on them now. Never tried colace , but nothing can constipate me. Did the diagnoss you with IBS and stress issues? Did you insist on gallbladder removal or did the tests prove you needed? Thank you for responding. One of those things I wish and thought would go away but never did. Started feeling sea sick one morning and have gone down hill ever since. Just don't live near the coast.
 
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biancalthompson replied to cleaner2005's response:
I did have a HIDA scan but it was back in 2007, it showed my gallbladder was a little sluggish but functioning okay. The doctor told me that if I had another attack then he would remove it. I didn't have another attack until April of 2013. I have never been diagnosed with IBS, I do have a hiatal hernia and GERD. The doctor said it needs to come out.

Thank you for keeping me in your prayers. I will update my recovery as I am able.
 
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calgal37 responded:
Cleaner, you said you went GF and all the bloating and heartburn stopped. How long were you GF? Did you return to the gluten? How do you know you don't have a gluten allergy? There are more forms of gluten issues than an allergy, so how were you tested? Many have food intolerances and in some cases it can take a full test panel looking for numerous issues to find out and correct the problem. Have you had that done?
 
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cleaner2005 replied to calgal37's response:
I have been gluten free for almost a year. I tried randomly and noticed a difference with bloating and heartburn. I dont think its exactly gluten, but something goes along with gluten, maybe in the bread family. You prob know, but there are traces of gluten in almost everything. I believe when they did biopsies from my colonoscopy and endoscopy they concluded no allergy. I have not had the blood test for food allergies, but that sounds like a great idea. That is one of the few things I have not had. I have had most every other tests, scopes, scans and so forth. Have you had any issues similar to mine? If so, did you ever get a definitive answer?
 
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calgal37 replied to cleaner2005's response:
My husband is gluten and dairy (casein) intolerant, and I work with individuals almost every day who have food intolerance issues among other physical maladies. Food 'allergies' are becoming more recognized as a real issue.

If you had a biopsy of the duodenum done and nothing showed up, the doc was looking for true celiac disease. But full-blown CD is not the only issue that can result from gluten ingestion. Another form of 'gluten-sensitivity' - one that doesn't show up on the standard biopsy - is also being seen. And it can cause just as much misery as can CD.

The other problem with the biopsy is that it can take up to 10 years for a biopsy to show the damage that is specific to CD. Meanwhile a person can have all the symptoms and continue to be miserable while being told 'you're fine.' It sucks, big-time.

My husband used the fecal antibody test developed by Dr. Ken Fine at Enterolab to finally find out what was wrong. When he changed his diet and got off gluten and casein it changed his life.




 
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cleaner2005 replied to calgal37's response:
Thanks again for the info. I will schedule the blood test and see what else my GP can offer. Sucks, is really an understatement, as its miserable. All I want to do is feel normal again, and have my energy and appetite back. I had a fecal test done but that was obviously different than the one developed by Dr Fine. I assume the one I had was for blood or the basic test. had 3 tubes to fill. I have never been on medicine and always wondered why in the old days they had a medicine cabinet. Now I realize.
Just blows my mind how I can have 20 tests done and nothing has ever come back as abnormal.
Thanks again!
 
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tyr74 replied to calgal37's response:
Hey calgal, would you mind sharing where you got the info on the CD biopsy... I keep going over my records and always thought that my symptoms pointed to celiac, but the biopsy was negative. Ive had the same symptoms noted above for 11 years now. I've had all the tests mentioned, plus a few others. I've also had my gal bladder removed. I quit going to the Dr a few years back, I really needed a break from them. All the pills were driving me crazy and I was making some stupid life altering decisions. I started exploring other options, cutting foods that made me sick. I did GF for a year with no change. I also stayed dairy free for a while, which actually seemed to be worse, think it was the soy. After that I learned to stay away from corn and any gmo food for that matter. I have also cut out high fructose corn syrup, and most added sugar (I binge sometimes). I maintain a high fiber diet, no alcohol, exercise regularly and use medicinal marijuana to control nausea. I know the mmj sounds bad but this is the best routine I've been able to come up with, and pain pills with serequel were ruining my life. I'm still sick 15 out of 30 days but er visits have gone from once a month to once a year
 
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cleaner2005 replied to tyr74's response:
Tyr74- yes the scripts can stop working after ur body adapts. I'm in NC so no mmj here but sure would help with appetite. Sucks ur gallbladder removal did not help. What other tests did u do? I need some answers.

Gluten allergy or Celiacs is ruled out on colonoscopy. But cal girl said 10 years in some to show up. Believe she did anyway.

What test did u find a success if any? This issue alters almost 3/4 of my day negatively. If I can load up on hyrdros it will help. But I run out and suffer at month end unil script refills.
 
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calgal37 replied to tyr74's response:
Tyr74, it's from watching the progression of the gluten issues in those that we work with at the office and in talking to those who have finally been diagnosed with gluten issues.

It's also the experience of those who previously posted on the WebMD boards before they changed the formats several times over the last few years. The older posters drifted away, which is a shame. Let me go back and see if I can find an older post by Kris that mentions what she went through. It might be 'enlightening' for you.
 
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calgal37 replied to tyr74's response:
Kris said: Well here goes, and you are welcome to share this with anyone it might help.

My first gluten intolerance symptoms began in childhood at about 6 after I was impaled, Mom wasn't home so I had to basically save myself, scared a neighbor to death when I knocked on her door. But after that was when I first became ataxic and the blisters started showing up. This was also when the intermittant joint and muscle pain and migraines started. At 10 I had surgery on both legs to correct congenital malformations, they discovered nerve problems in my lower legs and I got months of PT to learn to walk again. By my teen years my ataxia was so bad I began skimming walls, the blisters cleared and severe acne set in. I had also by this time started stuggling with depression and what we call brain fog. Things leveled off until I lost my first child, then the IBS hit. After the birth of my youngest symptoms really excaberated. My depressive episodes became more frequent and they were joined by explosions of temper that had no reason. I was diagnosed with a sub-illeal seizure disorder and put on valporic acid. This drug made me manic but the doctors thought I was getting better, I left my husband and purchased a succession of cars and generally acted nuts till I stopped the drug. Then the fun really began. The ataxia progressed furthur until even walking was difficult, the intermittant joint and muscle pain became constant and joint destruction became visable and I was told I had fibromyalgia and arthritis. They found during x-rays that I had osteoporosis (at 40) My thought process became severely effected, sometimes even the names of common things slipped by. If I need a fork I would ask someone to get that thing inside that thing and point. I was a head chef at the time and had to call for stuff I needed. It was easier to just get it myself it took less time. Around this time I also had a few episodes of getting into my car and not remembering how to start it. I also started to lose control of my bowels and bladder. To say I was scared was an understatement. My IBS was now daily but still not painful and I tended to begin each doctor appointment with 'oh and I still have D' I was told to just keep taking immodium a few times a day. I then got salmonella from Long John Silvers shrimp, the doctor was so used to hearing about my 'upset tummy' that she insisted I had a virus, I lost 20 lbs off a 110 lb frame in 4 days but she still thought it was a virus, this delayed diagnosis of the sammy for 2 weeks. the the s--t really hit the fan. The IBS wasn't painless anymore and I would see blood now and then. Doctor put me on an anticholeragenic with valium and the nightly 3 hour bouts of dizzy, gut wrenching pain and D began. Joints got so painful I couldn't even hold a coffee cup and I had to use canadian canes to walk. I was sent to a surgeon who refferred me to a PT in preperation for surgery to try and correct the incontinence issue. The PT insisted I go see an allergist, he skin tested me and the only thing not positive was beech trees! He also started me on the elimination diet and saved my life. The D was gone a week into the diet, for the first time in 15 years, I thought I'd gone to heaven. (continued)
 
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calgal37 replied to calgal37's response:
Here's the rest (continued):

Then I added wheat in and we had our answer. I went gluten free and really did not believe the allergist when he said symptoms other than the IBS would go away, but after about 6 months I was able to RUN upstairs, the first time I did it I didn't realize what I did till I got to the top and sat there and cryed for about a half hour. My migraines were gone, my joint and muscle pain were gone although the damage to the joints remains of course. Best of all I am free of the depression and difficulty thinking that I had before. I even knitted this winter and was able to follow a pattern. I am an extreme case of misdiagnosis, I never showed positive on blood tests, but I have learned there are many that share it, and still do.
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Kris - celiac 49 years -misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias and arthritis All resoved with proper diagnosis of Celiac November 2002 Children 2 with Ulcers, Depression, Aspergers, both finally diagnosed Celiac 6 months later Husband just gassy and spacey (autistic), diagnosed 2006


P.S. How could I forget the parathesia, that began also after my DD was born, they thought I had carpel tunnel and did surgery with only temporary relief. Then a neuro said it was because I drank heavily at 16 when my twin died, this was 30 years before the pins and needles started. I also lost at least half my hair and went into an early menopause complete with hot flashes and night sweats.[br>[br>