Discussions By Condition: I cannot get a diagnosis.

IBS IBD STRESS blah blah

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: LexusFay
  • November 18, 2008
  • 10:32 PM

I have had a colonoscopy, endoscopy, this test, that test and nothing seems to come out. But something is not right!

I went to my primary because I had stomach pains, aches, nausea, diarrhea constantly. I told him all these other symptoms just in case they were related. I have muscle and joint pain. I feel feverish at times, have night sweats. Weight fluctuates. Terrible terrible heartburn that no meds have helped fully. Food gets stuck. He said oh you have IBS, and possibly some non ulcerative "stomach pain" and sent me to a GI doc. (Which by the way is the worst in my area!)

Got there, they did an endoscopy, ignoring all the other stuff I told them only concentrating on the heartburn, cause it could be Barret's. Had the EGD, nothing but some inflammation on my stomach, and they dilated my esophagus, causing a tear. Heart burn still there, food still stuck and the DX, nothing!

Then a few weeks later, I had a very large amount of rectal bleeding as I had a bowel movement. Got in, they said oh lets do a colonoscopy. Had that done, they did a terrible job. I was awake the entire time, was crying out in pain, then the nurse even said that I did. That I was imagining it.

They said there was some inflammation a the end of my rectal area inside, did some biopsy's and nothing....

Now I am here. Can't eat much without wanting to throw up. Still have rectal pain, bleeding itching, and they say i don't have fissures or hemroids. On Levsin, protonix, and still get heartburn like I'm having a heart attack.

Oh I guess I should add I'm 23.....

I have all these other little things that seem to connect me to having some autoimmune disease. Not making things up, but I get skin rashes all the time, years apart. I have eye problems constantly. Like right now, I have iritis, which is common in people with an imparied immune system. I don't have HIV or AIDS or anything like that.

I just don't know where to go. I have people tell me there opinions all the time of what they think I have. I just don't feel right. Something else is up!!!

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10 Replies:

  • First of all, let me tell you... I can TOTALLY commiserate. I have the same nausea, diarrhea, occasional rectal bleeding, night sweats, etc. And, like you, I have weird things that can be tied to autoimmune disorders -- like the fact that I've been running a low-grade fever for a year.When they did the endoscopy, did they check for celiac disease? It can cause many of the symptoms you've got. In fact, some people who don't have actual celiac disease report having a "gluten sensitivity," which isn't life-threatening (like celiac is), but instead causes discomfort. (Think lactose intolerance, only to wheat/gluten.) You might try giving up wheat for a few weeks and see if it helps. (I tried this with no luck, but it's something YOU can do without a doctor, which at least gives you some control!)There is also a blood test they can do which (though not 100% accurate) can suggest the presence of celiac. I'd make sure your GI doctor has done this.You should also make sure you've had a complete liver and thyroid panel done. Do you get inflammation with your joint pain? If you ever experience swelling and redness with joint pain on a regular basis, you need to tell someone about it. Those are classic symptoms of rheumatoid arthritis, which IS an autoimmune disease.Funny thing about the digestive tract... it's not free-standing. All kinds of things can impact it. Not just stress and diet, either -- but all your other body systems, too. Your post doesn't say if you're male or female... but (especially in women) the reproductive system can have a major impact on your digestive tract if something is wrong. Good luck,Kari
    karibou 6 Replies
    • November 18, 2008
    • 11:31 PM
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  • Yeah, they tested for ways of Sunday for Celiac....Now about inflammation. When I have join pain sometimes I feel like I can't walk or move. I notice it more when it's really cold out, like a storm is coming or something, which can be just a coincidence. See recently I went into my doc for a physical...which I thought was blood work all that. They did a pap! I was sooooo angry. I need to make an appt and take a stand. Have everything checked out. Everyone has sort of given up on me. It took my 10 years to get a dx of Narcolepsy. I never let go of that one. I won't on this. Something is up. A few years back they did a brain MRI, no lesions, but I had a blood test that came back positive for ANA, which just could have been elevated at the time, or it could mean there needs to be further testing.I'm glad I'm not alone out there, the sad part is it doesn't look like you got relief.I am a female. I have endometriosis, but we have completely ruled this out as a factor in the issues I'm having. I'm just sick and tired of these "blanket" diagnosis. Before my Narcolepsy, my family doctor said it must be chronic fatigue.... Really? Chronic fatigue causes sleep paralysis and hullicinations?Thanks for the advise. I'm just so lost here. I wish there was a better way to tell what was up. Some tell me it's your diet, I change that and nothing happens, some say I need vitimins. I eat those and throw up, because I get enough of what I need from the foods I eat. I did try the gluten thing and it didn't help at all, I lived with a few roommates who were so it was easy, but not helping.Whenever they do my liver, my bilirubin levels are elevated which I'm not sure what that means. I just don't know anymore....
    LexusFay 4 Replies
    • November 19, 2008
    • 11:58 PM
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  • Okay....holy moly! I know it was crazy but I've been on this spree, writing down all my symptoms whether related or not. It was just a stupid little diagnosis quiz online, but I have 14 out of 15 symptoms of fibromyalgia. I've had a few people, not docs tell me this who have it. But now I'm really on the war path!
    LexusFay 4 Replies
    • November 20, 2008
    • 00:21 AM
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  • Been there, done that, and I still have no diagnose either. I dont know if what I am about to say is going to help much, but it is in any case a fact. Both crohns and ulcerative collitis can take years to diagnose! The biopsies are often unconclusive and in most cases they only find inflammation. (not that your intestines should be inflammed). I had ulcers throughout my colon and still no diagnose. You mention bleeding, and I can tell you this much - That is not normal, and it is cerainly not caused by a syndrome called IBS. Ok.. now... IBD (crohns or uc) causes joint pain (seronegative arthritis), and eye problems like you are having. It can also cause mouth ulcers (the small ones you see on your tounge or inside of lip) It causes nausea, stomach and back pain, and you can even go from diarreah to constipation. The reflux is also common to have with it. I had them all as well. Eating food that is easy to digest may help you get over the flare you seem to be in. It's worth a shot anyhow. You might find good help at these boards: www.healingwell.com .They have board for both uc and crohns. Also you might want to do some reading on all the other problems connected to both, so you know what to look for. Other then that all I can say is that you need to keep testing your crp, sed rate, wbcc and do fecal tests whenever you are having big time stomach problems. You should also have another colonscopy in a year or so and keep nagging the doctors. Hope you find som relief... Kiera
    Anonymous 42,789 Replies
    • November 20, 2008
    • 10:41 AM
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  • Keira is right on. Iritis is a big red flag for autoimmune diseases of all types. It is itself an autoimmune disease. Believe me, I know. I have Fuchs Heterochromic Iridocyclitis, a fancy name for a particualr type of iritis. Try here: http://symptoms.wrongdiagnosis.com/cosymptoms/iritis/proctitis.htm Even though you may not have proctitis, you may find the list of possible causes of interest. Behcet's and Reiter's syndromes may be things you might want to think about. As for me, my problems all stemmed from genetics. I was diagnosed with Turner Syndrome, which probably is the root of all my problems.
    aquila 1,263 Replies
    • November 20, 2008
    • 08:25 PM
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  • Your symptoms are completely consistent with Chron's disease, as is your age for onset of the disease. Your classic presentation of the disease is most evident in your rectal bleeding in conjunction with joint pain. Chron's disease has been successfully managed through medications, but untreated it can cause very serious complications. Diagnosis of Chron's disease requires a series of tests, as well as the elimination of other possible causes for your symptoms. I urge you to find a medical professional familiar with the diagnosis and treatment of Chron's. Best of luck to you in feeling better soon.
    Anonymous 42,789 Replies
    • November 21, 2008
    • 01:36 AM
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  • The stupid place I went to found inflammation on my stomach, and I have nothing. Everything came back normal. But something isn't right. I still have bleeding with every bowel movement, and they haven't done anything. I have been achy even more every day. I'm not sick. I was going to make an appointment with a Ruematologist but pretty soon I change over to another insurance company that is terrible. I'm scared, tired of being sick. I thought Chron's totally, told them that, and nothing came back as such.
    LexusFay 4 Replies
    • November 25, 2008
    • 03:13 AM
    • 0
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  • The stupid place I went to found inflammation on my stomach, and I have nothing. Everything came back normal. But something isn't right. I still have bleeding with every bowel movement, and they haven't done anything. I have been achy even more every day. I'm not sick. I was going to make an appointment with a Ruematologist but pretty soon I change over to another insurance company that is terrible. I'm scared, tired of being sick. I thought Chron's totally, told them that, and nothing came back as such. Clostridium difficile infection is on the rise in this country, and often overlooked by doctors. You need to request that they test for this specifically - it is a stool test. Have they done a comprehensive stool test? Often docs go right for a colonoscopy before doing a simple stool test. C. Difficile infection should be ruled out - make sure they have done this. It causes pseudomembranous colitis and is HORRIBLE! I know because I had this six years ago. Also when they do a stool test have them test you for candida in the stool. You sound like you could have candida overload as well contributing to your symptoms. Do you live in a Lyme infested area? This should also be ruled out. Lastly, have you tried a probiotic to help with your intestinal flora? Best wishesDOM
    acuann 3,080 Replies
    • November 25, 2008
    • 05:09 AM
    • 0
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  • My doctor actually did a full fecal work up. Everything came back "clean". As clean as pooh can....I finally went to my doctor today, told her everything that I was feeling, and she sent me for blood work. Didn't go today because everyone and their 105 year old grandchildren were there. Some problem upstairs. So first thing tomorrow i will have that done, of course I won't get it back forever because of the Thanksgiving holiday.But.....her suspicions are that of mine... Fibromyalgia. For all my other problems, I'm on the same meds that they put those with it on but an anti-inflammatory. Which I'm not excited about totally because of my stomach issues, but if that doesn't work, well find something else. I'm just excited I finally got a doctor to listen.
    LexusFay 4 Replies
    • November 25, 2008
    • 08:44 PM
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  • My doctor actually did a full fecal work up. Everything came back "clean". As clean as pooh can.... Again, I just feel this should be ruled out..If you could get copies of your test results and MAKE SURE they tested you for clostridium difficile infection then you can at least rule it out...doctors miss this and often don't include it in a full fecal exam. Please know that Allopathic treatments for fibro are often not very helpful IME. Research the candida/fibro connection and consider finding a good naturopathic or Oriental Medical doc to help get you back on track. I have worked with fibro patients and often acupuncture is the only real relief they experience. I think it would be helpful. Best wishesDOM
    acuann 3,080 Replies
    • November 26, 2008
    • 02:49 AM
    • 0
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