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Crohn's Disease
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Posted 2/16/2016 3:03 AM (GMT 0)
18 year battle and still not sure. Need direction/advice. DX chrons 7 years ago Colonoscopy report said Gastritis and Illeitis (is this Chrons??). After many meds Endocrot helped ALOT. Never have had bloody stools or huge weight lose. Worse symptoms - abdominal cramping pain (above belly button worse ever and hurts to the touch my R lower quad area), bloating, nausea, migraines, stomach pains followed by sweats & seizure activity, vision problems, stomach burning, and many more. Moved to TX and Gastro there said you dont have Chrons stop all these meds immediately so I did. I have had so many endo's, scans, colon test, celiac test, etc. A few years ago I was dx with Chonic Lyme and spent years in tx (not sure if this dx is accurate now). Now back to severe abdominal pains and cramping, low iron, low B12, low D, no diarrhea, and alot more symptoms. Back living in GA for a few years and a new gastro wants a CT Scan but I am so tired of test. Any direction anyone would advice?

Does this mean anything Saccharomyces cerevosiae IgG 34.9 (25+ high) Saccharomyces cerevosiae IgA 48.5 (25+ high)

This is a just a very small fraction of my health problems :) FUN
Posted 2/16/2016 5:30 AM (GMT 0)
Hi there, it seems you may benefit from a Dr who is more familiar with these types of diseases - in my experience a CT scan did nothing, after 4 in one month they were getting the same results and only ordering it because it was standard. I would find a specialist who will do a scope (either a colonoscopy or endoscopy) to see what is happening inside (a CT scan can't see that) and also go to a Dr who specializes in Lyme to be re-tested for that - is it the ELISA and Western Blot tests that are the most accurate? (I'm not sure, but I know many people who have Lyme and the symptoms can mimic others).

Good luck to you! The best thing you can do is find a doctor who understands these and most importantly listens to you. 18 years is a long time to have to deal with something that is not being treated properly. :(
Posted 2/16/2016 4:05 PM (GMT 0)
Ileitis literally means inflammation of the ileum. It can be Crohn's but it can also be other things. A Crohn's diagnosis is usually confirmed with biopsies, i.e. tissue analysis. That should have been done 7 years ago, when your colonoscopy was done.

I fully sympathise with being tired of tests, but I still think it's worth having another colonoscopy. I can't tell if you originally had Crohn's or not, but if you did, then it could be back. CT scans aren't the best test for diagnosing Crohn's.

I think it's also worth getting re-tested for Lyme disease.

Does this mean anything Saccharomyces cerevosiae IgG 34.9 (25+ high) Saccharomyces cerevosiae IgA 48.5 (25+ high)

It's something to do with the prometheus test, that's all I know. I don't know much about it, other than it's not entirely reliable. As a standalone diagnostic test, it's useless: you still need to have other tests, such as colonoscopy, etc. to diagnose Crohn's.
Posted 2/17/2016 12:27 AM (GMT 0)
Saccharomyces cerevosiae IgG 34.9 (25+ high)
Saccharomyces cerevosiae IgA 48.5 (25+ high)

Those test address specific antibodies that people with Crohn's might have. Something like 40% with Crohn's have elevated levels of both antibodies.

Symptoms + elevated levels of these antibodies = suspicion of Crohn's
Posted 2/17/2016 12:47 AM (GMT 0)
Hey Everyone Thanks. I see a Lyme specialist (as there are only a handful in the United States). I travel out of state for care and its pricey as amost Lyme Dr's dont take insurance. I am going to see if my Lyme Dr can run another Lyme and co infection test. They use a company in CA called Igenix for the Lyme test. They also dx me with Bartonella and a few other co infections. Mind you my last tick bite was 30 years ago. NiceCupOfTea I have had 4 colonoscopies with only 1 showing inflammation but I know I have a bowel disease of some sort as the abdominal pains and other side symptoms are just so similar.
Posted 2/17/2016 1:40 AM (GMT 0)
I would go w the others that you should see an experienced doctor who listens well. For 9 years, I had clear colonoscopies, CT scans and MRIs. All the biopsy results ranged from mild active ileocolitis to mild ileitis and chronic proctitis. My GI used to tell me he had suspicions I had Crohn's. I too have chronic problems w my stomach and severe abdominal pain and diarrhea. I was put on all meds known to treat Crohn's except for biologics. This year, and after 9 years, I have developed a perianal fistula and my Crohn's diagnosis has been confirmed. I'm now on Remicade. All the second opinions I've taken have told me that my GI is mistaken though he is one of the big shots in my country. They saw that all I have is IBS. Now, it turned out that he was right from the beginning. So, if you feel that something is wrong, fight for getting a proper treatment.It's never too late and you deserve to have your pain relieved after all these years. Sorry I'm not familiar w Lyme disease but hope your appointment w the doctor to be successful.
Take care :)
Posted 2/17/2016 10:14 PM (GMT 0)
I'm curious - did the gastro in Texas do any tests to base his declaration that you don't have Crohn's?
Posted 2/18/2016 1:36 AM (GMT 0)
JaSanne - Capsule camera. He said the capsule camera was clear and all my blood work was good. Now my bloodwork shows deficiencies but this is years later.
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