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Old 11-13-2011, 11:21 AM   #1
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Angry malabsorption - cause missed for 25 years

Basically I'm angry. I was diagnosed with osteoporosis when I was 35. Shortly after that it was determined that I had mal-absorption, but they didn't know why. At the ripe old age of 60 I just got diagnosed! I have Crohn's! (It was done with a blood test for antibodies for Crohn's that is patented and done by only one lab, Prometheus. )
I've have nausea and diarrhea and abdominal pain off and on all my life. Anorexic as a teen, I was not afraid of getting fat, food made me sick. In my 20s I was told there was nothing wrong with me, it was in my head. In my 30s the line was it was irritable bowel syndrome, but they didnít really know what it was or what to do about it, but since I was a teacher it was probably caused by stress. In my 30s the arthritis started getting bad so I started on NASIDs. When drugs came out for osteoporosis I also took those, the combination of both these drugs ate my stomach and I wound up with stomach surgery 2 years ago at age 58. All the time my weight went up and down as the nausea, diarrhea and occasional vomiting came and went.

Iím sure I have a mild case of Crohnís, otherwise an obstruction would have put me in the hospital and, hopefully, it would have been identified a long time ago. As of 3 weeks ago, when I got my diagnosis, I'm on an anti-inflammatory drug that has gotten rid of most of the nausea and has cut down on the diarrhea. Iím learning more about diet than I had by just trial and error over the years. I canít believe that a disease that has affected my whole life is just now being treated.
When my doctor told me I had Crohn's he told me that at least I knew it wasn't in my head; I told him that I never thought it was.
Right now we are trying to get the inflammation under control. It is a problem throughout my body, not just the bowels. I also have asthma and get migraines which some studies link to Crohnís besides the arthritis and osteoporosis. I'm waiting to do another jaw X-ray at the dentist to see if my jaw is healing up from an abscess so I can have my next reclast infusion for the osteoporosis since I can't take oral meds for that any more. All because Crohn's went undiagnosed and untreated.
Having said all that, I am happy to finally have an answer, and to be able to do something about it.
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Old 11-17-2011, 09:44 AM   #2
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Re: malabsorption - cause missed for 25 years

Boy, do I understand your frustration and am glad at least you know have a diagnosis. I sure am hoping the drs find my cause. Now that I have SEVERE osteroporosis, I am finally being paid attention to. I even had a dr tell me I had a mental disorder. I faxed my report to him and told him he needed to change his diagnosis. I am so angry. We know our bodies are telling us something is wrong

 
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Old 03-18-2012, 11:34 PM   #3
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Re: malabsorption - cause missed for 25 years

I have very similar symptoms and I don't know why. In my 20's I developed severe bowel problems. Chronic diarrhea, sometimes mucus, liquid only, chronic bleeding, fissures (ulcerated). No diagnosis. In my 30's I have decreased in height 3 inches. Chronic joint pain since early 20's also. Nausea, fatigue. loss of mobility. I have had uveitis. Periods of rapid weight loss. Many red blood cell abnormalities. Chronic elevated white blood cells. My colonoscopy last year (and several before) are inconclusive. I am 41 now. I was diagnosed with irritable bowl because there are no answers. My diagnosis remains unknown. They suspect an auto immune disease but don't know what. It seems to come in flares. I am receiving no treatment yet. I am curious about your testing. Thank you for your post.

 
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Old 03-20-2012, 05:59 PM   #4
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Re: malabsorption - cause missed for 25 years

Holypie, I'm sorry to hear what you've been through. Sorry, I don't know what uveitis is. What I can tell you about Crohn's is that if you have it in the small intestine it will not be found with a colonoscopy. There are 2 ways to diagnose it: one is with the blood test from Prometheus labs which is something like 80% accurate and the other is to swallow a pill cam and let the doctors see what is going on in there.
If you have shrunk, what happened? Compression fractions in your vertebrae or compression of the disks? If you vertebrae are breaking it is either already painful or is going to get painful soon as the nerves become pinched. There is surgery they can do for this in which they inject a substance into the vertebrae to reshape it and take the pressure off the nerve. Get a bone density scan (DEXA scan) to see where you stand. If you have osteoporosis and that is the cause of your shrinkage then you calcium supplement should be a citrated calcium which is highly absorbable and not calcium carbonate which is difficult to absorb.
I recommend you get on the Crohn's Forum. There is a thread for the undiagnosed and you can compare notes with those folks. They have lots of experience with tests and what they may or may not mean.
Good Luck
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Old 03-28-2012, 08:03 PM   #5
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Re: malabsorption - cause missed for 25 years

Thank you kindly for your response.

 
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