Discussions By Condition: I cannot get a diagnosis.

Real life Dr. House?? Help!!

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: DailyNhtly
  • February 2, 2007
  • 08:18 AM

I'm at my wit's end. It's been 4 years now and not only have I yet to receive a diagnosis, but I have had some very skilled doctors and specialists give up on me --whether it was by graciously 'accepting defeat' and telling me they no longer knew what to do or where to refer me, writing me off a narcotic seeking addict or simply refusing to return or accept my phone calls.

I can go into details if you like: medications tried, diagnoses given, surgeries experienced, tests done, so on and so forth, but long story short I have unexplained stomach pain that I can't seem to associate with anything (food, stress, etc). All of the simple disorders have been ruled out (e.g. acid reflux, IBS), as well as the obvious (e.g. Crohn's) and the not-so-obvious (e.g. Meckles diverticulum). I am unable to hold down a 'real' job because of the unpredictability of my 'attacks' (not to mention the fact that it's rather difficult to explain to your boss, "I may not be in because sometimes my tummy hurts" with no doctor's note to back you up ::sigh:: ) and I feel like I should be dealing with much more trivial and childish 'problems' at age 25, instead of wondering whether I'm dying or not...

I will put up with pretty much any test and expense (payment plans are great, aren't they?) if someone could simply attach a name to my excrutiating pain --treatment or not. Also having to deal with Sjogren's, I've been pointed to Rhumatologists in addition to the GI specialists and Internists. I've even been to see the supposed miracle workers of the Mayo Clinic (what an awful experience!!) with no luck.

I am currently located in Alabama but would be happy to speak with anyone that thought they might have an idea on what was going on. So if you know anyone that might have some expertise in this area and loves a challenge, please get me a name and I'd be happy to follow up; my sanity depends on it.

Thank you. Even if it's just for listening to my rant :rolleyes:

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10 Replies:

  • I had Meckles diverticulosis at forty(rare) but now I Have gluten intolerance...try not eating anything with wheat and gluten for a week or so........ hope it helps........ a painfull person too
    Anonymous 42789 Replies
    • February 4, 2007
    • 11:47 AM
    • 0
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  • are you male or female? If female, check out endometriosis. In either case, I agree with the poster above about gluten & celiac disease. Candida Albicans is another possibility. Get ye some Threelac (available on Amazon). And, final possibility another type of food allergy - get an Elisa test - available online here http://www.optimumhealthresource.com/they can check for gluten intolerance as well
    Anonymous 42789 Replies
    • February 4, 2007
    • 03:46 PM
    • 0
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  • Supposedly (I'd have to search through the files to find it) I have been tested for gluten sensitivity but I am going to see my GP tomorrow (I figured I'd just throw a list of random crap at him since he doesn't seem to have any ideas) and will mention that, as well as NCGI, the ELISA, Candida and C. Difficile, porphyria, intercostal nerve entrapment (a long shot, I know), hepatic hemangioma, Gilbert's Syndrome, and pluerisy/pleural effusion...I managed to create that list from searching through the forums here, so please let me know if you have any ideas/opinions on that. I have tried to research everything a bit but I'm pretty clueless on a lot of it. One thing that I have seen mentioned (only twice, I believe) is "internal synagram" --what is that??Thanks all :)
    DailyNhtly 2 Replies
    • February 5, 2007
    • 08:26 AM
    • 0
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  • This is an interesting article on Non Celiac Gluten Intolerance. One of the interesting things in it is that it states that 15% of the population may have this while only 1% actually test positive for celiac!http://www.foodreactions.org/gluten/..._negative.html
    Anonymous 42789 Replies
    • February 5, 2007
    • 11:05 AM
    • 0
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  • Well, I looked up Alabama in www.acufinder.com and it looks as if there are a handful of acupuncture practitioners working in Auburn area and others. Please visit this site and type in your zip code to find one near you. I recommend acupuncture to help as it is really excellent for GI troubles and even though you can't get a Western diagnosis you can still be diagnosed and treated through Eastern medicine. It is a different approach to illness, and helps get the body back in balance. it is also helpful for autoimmune disorders like Sjogren's. Other alternative approaches I'd try are chiropractic/kinesiology, naturopathy. Give these a shot and see if you feel better. I agree with other posters on gluten intolerance. A good soothing food therapy to make is called rice congee (porridge)Take 1 cup short grain organic brown rice. Cook this in 5 cups water, bring to boil and simmer over a low heat for at least 3-5 hours. This is great to help sooth digestion. If you are female you need to have a complete lower abdominal/vaginal ultrasound done if you haven't already. Hope this helps and try the congee!DOM
    acuann 3080 Replies
    • February 5, 2007
    • 03:25 PM
    • 0
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  • This is an interesting article on Non Celiac Gluten Intolerance. One of the interesting things in it is that it states that 15% of the population may have this while only 1% actually test positive for celiac! http://www.foodreactions.org/gluten/..._negative.htmlI Europe they regurly test for celiacs, not in the United states..more tests need to be done, we are not getting the help we need.........suffering here........ but hopeful
    Anonymous 42789 Replies
    • February 5, 2007
    • 05:03 PM
    • 0
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  • yes take a look at th1 inflammatory diseases stay away from homeopathy or just pretend to go its just as effective.
    Anonymous 42789 Replies
    • February 6, 2007
    • 00:34 AM
    • 0
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  • There seem to be many people suffering from the same symptoms of an unknown origin. There are at least a dozen more people talking about this same issue in thread Severe abdominal pain and another thread with a woman asking about her 5 yr old daughter with the same symptoms. I currently have been having many different tests run to try to find diagnosis. I know exactly what you are going through. I recently had to quit my job for 2 weeks then get it back due to extreme symptoms. Please reply.
    Anonymous 42789 Replies
    • February 7, 2007
    • 08:05 PM
    • 0
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  • I had the same symptoms as you and it turns out I have gluten intolerance and my stomach issues are almost completely gone. I was positive for IgA antibodies, but not all people are. If you are positive they will do a upper endoscopy to make sure you don't have celiac's disease and they should also do a colonoscopy to check for microscopic inflammation in the small intestine. If they do them at the same time they will put you to sleep. I do still have autoimmune symptoms such as malaise, swollen lymph nodes, trouble swallowing, joint pain, etc. so there is probably more going on than just the gluten intolerance, but at least I don't have to deal with the sudden trips to the bathroom anymore. P.S. There are many more symptoms than just stomach problems. Because of the Gluten Intolerance I have severe Vitamin B12, C, D, and Zinc deficiencies that cause a very long list of terrible symptoms. I am new to the diagnosis so I am still being treated for deficiencies. I have heard that it can take 1 to 3 years to completely head your stomach after you stop eating gluten. It is hidden in many things, but honestly, gluten has some addictive properties, and after you stop eating them for about a month you don't miss the food near as much as you think you will. Also if you stop eating gluten it will affect your test so make sure you have the blood tests and the biopsies before you try the gluten-free diet.Good luck. :)I'm at my wit's end. It's been 4 years now and not only have I yet to receive a diagnosis, but I have had some very skilled doctors and specialists give up on me --whether it was by graciously 'accepting defeat' and telling me they no longer knew what to do or where to refer me, writing me off a narcotic seeking addict or simply refusing to return or accept my phone calls.I can go into details if you like: medications tried, diagnoses given, surgeries experienced, tests done, so on and so forth, but long story short I have unexplained stomach pain that I can't seem to associate with anything (food, stress, etc). All of the simple disorders have been ruled out (e.g. acid reflux, IBS), as well as the obvious (e.g. Crohn's) and the not-so-obvious (e.g. Meckles diverticulum). I am unable to hold down a 'real' job because of the unpredictability of my 'attacks' (not to mention the fact that it's rather difficult to explain to your boss, "I may not be in because sometimes my tummy hurts" with no doctor's note to back you up ::sigh:: ) and I feel like I should be dealing with much more trivial and childish 'problems' at age 25, instead of wondering whether I'm dying or not...I will put up with pretty much any test and expense (payment plans are great, aren't they?) if someone could simply attach a name to my excrutiating pain --treatment or not. Also having to deal with Sjogren's, I've been pointed to Rhumatologists in addition to the GI specialists and Internists. I've even been to see the supposed miracle workers of the Mayo Clinic (what an awful experience!!) with no luck.I am currently located in Alabama but would be happy to speak with anyone that thought they might have an idea on what was going on. So if you know anyone that might have some expertise in this area and loves a challenge, please get me a name and I'd be happy to follow up; my sanity depends on it.Thank you. Even if it's just for listening to my rant :rolleyes:
    Anonymous 42789 Replies
    • November 10, 2010
    • 01:59 AM
    • 0
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  • I know this is an old thread, but check out Sphincter of Oddi Dysfunction- I suffer for a long time with no answers!
    Anonymous 1 Replies
    • January 31, 2014
    • 05:35 PM
    • 0
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